This post by J is about his withdrawal. He takes a different approach to the ones outlined in Side Effexor Withdrawal through to Helping H – an engineering approach rather than a therapy one. Next week we will feature a post about some of the TRP (Transient Receptor Potential) Channels he mentions.
I usually work as an Engineer in an Embedded Systems development capacity. I was prescribed 40mg Citalopram towards the end of 2004 after I was made redundant from a role in Cambridge and I felt nervous about meeting my financial obligations and finding new work.
First Withdrawal
In 1992, whilst at university I had been prescribed Seroxat, which I came off around 1996 with the usual problems of head zaps, dizziness, and unpleasant autonomic disturbances. Unpleasant but not too difficult – except I went through it whilst working at a Satellite Systems development company in Newbury and I was suddenly all over the place and got fired from that role.
Second Withdrawal
After starting Citalopram in 2004 I tried twice to reduce it. The first time I just stopped taking it abruptly on beginning a new job. I was doing fine to begin with but after a month things went haywire and I was reduced to a quivering wreck, I had to give that job up. I drank quite enthusiastically to mitigate the dreadful symptoms. My GP gave me some Diazepam for a week and put me back on the full dose of Citalopram and the symptoms vanished as swiftly as they had appeared.
Third Withdrawal
I found it peculiar that things hadn’t gone completely haywire until almost a month after stopping. So, some years later I tapered down gradually to 30mg Citalopram. I wanted to get off this medicine so I then tried tapering from 30mg, 15mg, 7.5mg, 3.75mg to 0mg over 4 months whilst I was unemployed. Even with this scheme I was hit by severe incapacitating symptoms – a month after stopping the 3.75mg dose. Again, my GP gave me a week’s worth of Diazepam and returned me to the full 30mg dose of Citalopram. It was clear Citalopram would be difficult to come off.
I managed to get work as a PLC Controls Engineer early in 2011. Although I wasn’t feeling on top form, I enjoyed it but the work schedule was intense. I was pleased to be made redundant from that role in April 2012 as I really was feeling very ragged and I thought a more sedate desk bound embedded systems role would suit me better. I got one in April 2012 where I worked on developing a simple marine anemometer. To begin with I was doing fine, however things started to go wrong a few months later. I carried on working but my focus was going and I was starting to feel a bit all over the place. Eventually I was so distracted and had headaches and what I now know to be akathisia, I couldn’t continue to work and in February 2013 I left. My employer was a nice fella he was as puzzled as I was by what happened with me.
I decided it was a combination of tolerance to and withdrawal from Citalopram. It left me feeling quite ragged and I couldn’t work during 2013. I went through the required motions with the Department of Work and Pensions but being forced to look for work when I knew I couldn’t honour a contract due to my iatrogenic health condition made me feel bad.
Switch
At the end of February 2014 my GP said I needed to be moved onto the alternative SSRI Sertraline as Citalopram had obviously pooped out causing me tolerance withdrawals. So he made the change to 50mg Sertraline and in April 2014 I was sent into a hellish state which I got through by drinking Brandy when I felt I needed to. That state was bizarre and frightening but it thankfully subsided in May. After doing some research I decided to taper down to 25mg over 4 months which I managed but had brain zaps, very vivid dreams and terrible night sweats.
I flew to Australia in October 2014 and spent time with family who all emigrated there in 2001. I was very burnt out, slept a lot and felt distant and like a zombie. I managed to go fishing but felt odd and dissociative like I was in a dream. I couldn’t do much about it. Some beer perked me up a bit now and then but I wasn’t properly present. So I went back to the UK in November and wondered what to do.
I wanted to feel better and get back to work as an Embedded Systems Developer on some project but I had little confidence in having consistent health so I felt it was foolish to sign a contract. More recently I decided it was no longer safe for me to drive due to my condition.
I spoke to an old work colleague about tapering off Sertraline using a successive dilution method toward the tail end of 2019 and then I found RxISK. I spoke with David Healy about my proposals for SSRI tapering systems to begin with. He was looking for an Engineer so I thought a bit about how I could design cheap QST machines or Biothesiometers for use in peripheral nerve assessment for PSSD. I was interested in coming up with Arduino Adafruit type embedded systems solutions to these requirements. If I could work from home under my own direction that would be great, I didn’t have a lot of equipment and I would need to build prototypes but I knew what to do if I had the right tools and equipment.
A New Approach
I decided I could make myself useful by looking into papers which had unearthed plant derived ion channel agonists. I began with TRPV1, TRPA1, TRPM8 and TRPC6. I went searching for agonists for all those ion channels using Google Scholar. These TRP ion channels are strongly linked to the peripheral neuropathy that crops up in PSSD so finding plant derived TRP agonists might be very helpful to the RxISK mission. I came up with lists of agonist compounds for each of those TRP ion channels. (One of J’s lists will feature in the next post – DH).
I was looking through papers for agonists which might be helpful in restoring SSRI damaged channels functionality as this might lead to possible PSSD and withdrawal cures. The more people who look into this besides me the better as there are a lot of papers and a lot of ion channels that might be restored using agonist compounds.
As the symptoms of protracted withdrawal are extremely unpleasant and make life very difficult for those afflicted, it would be nice to have some reliable supplements that could help take the edge off withdrawal symptoms. So, I went looking for those and I initially decided that anxiolytic supplements like L-Theanine, Passionflower, Lemon Balm, Valerian Root, Chamomile, Feverfew would be helpful based on the TRP research I had read.
I began ordering these supplements from Amazon and taking them each day. They did make life easier. My craving for alcohol vanished and I no longer needed to take Cocodamol to reduce my headaches.
A paper showed Feverfew helped with migraine significantly through it’s inhibitory effects on TRPA1, so I kept on searching for more supplements that might help by mitigating the symptoms of protracted withdrawal.
Sulforaphane
I was struck by the similarity of symptoms in people experiencing SSRI protracted withdrawals with those that crop up in Autism Spectrum Disorders, so I looked into supplements with solid trial data demonstrating improvements in ASD as they would probably help people in protracted withdrawal states.
I found a paper about a trial of Sulforaphane in Autism. Sulforaphane can be found in broccoli, bok choi and cabbage. Autism has common features of hyperstimulation and subjective discomfort which produces typical ASD aberrant behaviours so I thought it might help manage SSRI protracted withdrawal symptoms.
| Improvements In | Placebo N Responses/ N Subjects | Sulforaphane N Responses/ N Subjects |
|---|---|---|
| Overall Autism | 0/11 0% | 0/26 0% |
| Social Interaction | 0/11 0% | 12/26 46% |
| Abnormal Behavior | 1/11 9% | 14/26 54% |
| Repetitive Behavior | 0/11 0% | 6/26 23% |
| Verbal Communication | 0/11 0% | 11/26 42% |
| Nonverbal Communication | 1/11 9% | 5/26 19% |
| Inattention | 0/11 0% | 3/26 12% |
| Anxiety | 0/11 0% | 2/26 8% |
| Sensory Sensitivities | 0/11 0% | 6/26 23% |
| Restricted Interests | 0/11 0% | 0/26 0% |
I also found a trial showing Vitamin B6 alleviates akathisia. The paper said 200mg-400mg but it is usually considered risky for someone of my age to take more than 100mg Vitamin B6 but if you are afflicted with akathisia it is probably worth risking taking a higher dose. Always try to look for solid trial data that shows some supplement has demonstrated utility in amelioration of a particular symptom.
I have been taking the following supplements which have at least a theoretical rationale in managing SSRI protracted withdrawals – Omega 3, Probiotics with live strains of bacteria, Choline Bitartrate, Taurine, Magnesium Glycinate, Magnesium L-Threonate, Hops Flower, Green Tea Energy Complex with Matcha Green Tea, Sage Leaf Extract which will help diminish the sweating that occurs with SSRIi induced dysautonomia, Vitamin B Complex, Vitamin B12 and Vitamin D3.
There are other supplements for which there is some evidence like L-Tyrosine, Acetyl L-Carnitine, Selenium, Zinc as well as Vitamins A, C and E but it doesn’t seem a good idea to be on too many things at the same time.
Does this work? It has made a big difference to how relaxed I feel. I typically felt rotten in the morning, took my supplements, and felt better a few hours later. I now take a dose of supplements at night also and feel much better first thing in the morning when I repeat the dose.
I now need to get liquid sertraline from my doctor and put everything to the test by reducing and hopefully finally stopping the final 25 mg. I will report back here.
annie says
This is a great post in so many ways.
This is such an exciting development, getting in to the nitty-gritty as to hows and whys of antidepressant actions and the potential of plant derived TRP agonists for severe withdrawal and possible Akathisia
David finding an Engineer –
I can attest to stopping an SSRI and the ‘crippling’ withdrawal taking a few weeks to manifest –
I have always wanted to know why all this happened: medically, scientifically, pharmacologically.
J taking us through his withdrawal experiences and him looking at it realistically is a real boost and has enormous research possibilities for those of us who were blindly taken up alleys.
I think J is really on to something and if I describe briefly, it might help J with his research and J has really thought this through – bear with me in trying to piece together the puzzles
In 2002 it took 6/7 weeks off Seroxat for the withdrawal to become completely unmanageable –
A few days after dropping from 20mg the brain zaps started, then my brain feeling like it was floating around and lurching from side to side in my head, then the continued breaking down in a torrent of tears and distress, then the nightmares, and so many other symptoms that I couldn’t function at all and made the worst mistake possible, I restarted it.
Then I was consumed with a physical energy that was horrific.
I too was given Diazepam, in a mental hospital which seemed to settle me somewhat.
However, with no Diazepam in my system when I drove home, vivid thoughts of extinguishing myself became very real and within three days I found myself acting out on hallucinations.
Given Diazepam in another hospital and gasping for Seroxat, my system settled down very quickly.
In 2003, I now had to reduce from 40mg.
The plan from a hospital pharmacist was year-long with Paroxetine liquid.
I am describing this as you are about to use liquid Sertraline and I wouldn’t want you to go through what happened next.
I was back in the world of 2002, with the last remaining mls.
The doctor refused me Diazepam and I was a complete mess of physical and mental collapse.
I had to force him to give me Diazepam and he wrote out a disclaimer in my notes for me to sign.
Month after month, I was bed-bound slowly becoming a vegetable. Anorexia, spasms and jerks, a dissociated state. If my mother had not been staying with us, I would gradually have declined to such an extent that my then five stone self would have succumbed to bodily failure.
There were no additional pills in 2003 as in 2002, the Diazepam, Lorazepam, Librium and Propanolol.
I was abandoned and neglected medically despite constant calls to the doctors.
The surgery was a mere one and a half miles from my home down a country road.
But it happened. Slowly, slowly, slowly I began to recover due to the loving care of my mother.
Not one drug had passed my way since the liquid, thankfully.
If they had thrown all the drugs at me and I had gone down that route again, I could have been locked in for years –
As you sound totally tuned in to yourself, please watch yourself as you administer the last of the liquid.
All the supplements you suggest sound well-rounded and natural and I am quite persuaded that these could have helped me during months of severe decline when my body was getting no nutrients and nothing to feed on.
Instead a slow poisoning was taking place with absolutely nothing to stop it –
We haven’t delved too much in to Ion Channels and the effects from antidepressants but it is clearly something we should know about. After all, the manufacturers must have done some work in this area and I have always wanted to know why they work in the way they do and it is great that you as an engineer with great thinking skills are well-placed to take us along.
Just been reading up a bit for some background ‘ion channels as targets of psychopharmacological drug action’
[https://www.chegg.com/flashcards/chapter-3-ion-channels-as-targets-of-psychopharmacological-drug-action-1a8bdc1f-c885-4833-9375-e8486537be4e/deck]
Thank you J for further steps forward in our understandings of the mechanisms of antidepressants and how they affect so many of us.
Justin Oxley says
This paper is very good. The best way to understand how the ion channels work is to ask the Physicists because they start reason upwards from first principles.
https://iopscience.iop.org/article/10.1088/1367-2630/17/8/083021/meta
https://youtu.be/NV3sBlRgzTI
Sky says
Really helpful thank you how can I follow these writers?
Rachel says
I have been on 100mg of Setraline a day for 12 years. I decided for many reasons that I have had enough. I did a little research and read about gaba and it’s effects on the brain. I purchased some gummies which took the edge off but what I found to be really useful was valarium. A 300mg dose was enough too really lesson the symptoms of discontinuation. I take a 400mg at night. The brain zaps are quieter and less frequent and I feel able to concentrate. I am only on day nine of discontinuation and I know I have a way to go but now I believe I can make it through.
mary H says
What an excellent post. My word, J, you certainly have been busy and have managed to present your work in such an easy-to-read manner. I won’t pretend that I know exactly what you’re talking about – ‘ion channels’ etc. are double Dutch to me! However, by the time I’d finished reading I did feel that everything you’d said did make sense. I haven’t ever taken these kinds of drugs but I have watched my son go through severe problems on, and in withdrawing from, prescribed psychiatric drugs over the past good few years. Many of your comments would also apply to his problems.
It is wonderful to have this piece, written from different perspectives, all happening in the one person. You have suffered on the drugs that you were prescribed, you have researched into the possible causes of your suffering and then found ways of, possibly, supporting yourself and making withdrawal easier. You have bravely personally tested your findings and found some relief from their use – and now you are sharing all of this with as many sufferers as may read it here.
All of that plus using your engineering background to support the search for a better understanding of PSSD etc. What a fantastic stride forward this could turn out to be. I sincerely hope that being involved in all that you have been doing has, in its own way, helped you with your own struggle too. Thank you for sharing your story so far.
Pogo says
Think that this is a very promising way to approach your next withdrawal.
I can certainly appreciate the concern of taking too many at once. When I was experimenting with supplements for my ME/CFS, much time was spent balancing my desire to keep adding something new vis my gut feeling to err on the side of caution. Still, it is worth remembering to try everything in turn (even writing out a protocol, as I found my memory became over loaded with things to remember), (I borrowed ideas to, of how to keep track of my progress, from looking at my Linux Error Log files, etc). My rational for trying everything eventually, was firmed up by experience and the disappointment, that what works for some people doesn’t work for all – and some of my first choices were not efficacious as claimed by others. So I will add to you list another TRPM8 Antagonist Rhodiola rosea, which has been recommended by many for aiding withdrawals. The Journal of the American Botanical Council reported on 180 studies done on Rhodiola Rosea and lists more indications than under the European ‘Tradition Herbal Registration’. [1] Of course there are many more which I expect you will mention in due time.
Now that gut microbiota is being more widely accepted for its ability to affect the mind, I noticed a paper published this year where children in standard urban and nature-oriented daycare centres were analysed for comparison. Obviously, the later developed a more divers biome and better immunity. [2] Whilst Mikhaila Peterson has posted a video demonstrating exactly how she did her own fecal microbiome transplants. Many people with mental health issues find gardening beneficial, I wonder if this is an overlooked part of the reason?
In western medicine the paradigm is ‘one drug one disease’ and the more conditions one has the more drugs one gets put on. The Traditional Chines approach appears to focus on aiding the return of good haemostasis by prescribing a combination of herbs, so allowing the body to get on with the job of healing itself, which seems to me, similar to what is being proposed here. Good luck.
[1] Rhodiola Rosea article with references to studies. https://nootropicsexpert.com/rhodiola-rosea/#_edn1
[2] Biodiversity intervention enhances immune regulation and health-associated commensal microbiota among daycare children https://advances.sciencemag.org/content/6/42/eaba2578?elqTrackId=a9f74176dd194ccc80e22d48d567cc9b
Justin Oxley says
Be very careful when adding in supplements, I read a paper which demonstrated that Ginko Biloba, Rhodesa Root, Milk Thistle, Ginseng showed a statistically significant increase of inducing serotonin syndrome when combined with an ssri. L-Tyrosine can appear to improve things to begin with but further downstream this can induce hyperthyroidism which nobody wants on top of protracted withdrawal. Being a bit paranoid and asking a few questions is a good thing sometimes.
Justin Oxley says
Why does something happen ?
https://youtu.be/36GT2zI8lVA
Expecting protracted ssri withdrawals to vanish for no reason is a bit like expecting Fainting Goats to suddenly stop falling over all the time.
Myotonic Goats have a genetically induced Chloride ion channel mutation which causes them to fall over when they get startled. It’s not reversible as it is hard coded into the Goats DNA. Acquired Channelopathies due to drug/toxin effects should be reversible.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3935107/
https://youtu.be/upOMG8tF4jc
Justin Oxley says
Never be worried about feeling confused or not knowing or understanding something I think confusion crops up in all sorts of animals quite a bit. I’m confused as to why people shout and rant and rave. I don’t understand the point of fireworks either, I would be much happier without being forced to endure a rapid sequence of loud unpredictable explosions and bright colourful lights tonight.
https://youtu.be/J0XFtCEhSr8
https://youtu.be/Uxa1gLt5YKI
susanne says
J I think the way you have tackled the research is awesome. I simply don’t have the ability to follow the science but have read other suggestions about use of supplements which don’t give the reasons as you have explained If your findings can be ‘condensed’ into s what individuals could take according to their own situation that would be great even if it doesn’t lead to a total cure for everyone (We have learned to be cautious as you’ll know too well).. Looking forward to your next post.
A thanks for your link to the cards – they are really useful for me
Justin Oxley says
Below is a large industrial tape winding machine, it is not unreasonable to imagine that a water soluable ssri infused 1mg/cm tapering tape might be produced. A day vs length App could tell someone who wants to taper how much tape to dissolve in water each morning. The App just follows the hyperbolic dose reduction curve and displays a daily length in mm to cut from the roll.
https://youtu.be/iaa7-uKcUWg
Here a fella builds a simple Arduino driven bobbin winding machine, a similar device could produce rolls of ssri tapering tape.
https://youtu.be/kGyuscK9GaA
Jistin Oxley says
I thought I might try this supplement which has alot of component herbs I have not looked into. It has produced splitting headaches and even my teeth began to sting. There are many composite powder supplements like this one, I would be inclined to avoid them. It is wise to add single component supplements to a regime one at a time and give it a few weeks to see if it has been helpful. I would avoid this one now. I’m not going to make a Cup-a-soup with this one again, I’ll add it to groundbait when I go out fishing it won’t go to waste.
https://www.amazon.co.uk/Wisdom-Supplements-Hemp-More-Supplement/dp/B087YN52GW
mary H says
Certainly plenty of food for thought here. Next requirement could be a prototype of something that could measure the individual’s absorption of the drug so that it could indicate at what rate it was safe to reduce ( as in dose strength or time needed before further reduction). The “hyperbolic dose reduction curve” would not necessarily show an individual’s safe rate of reduction surely?
Justin Oxley says
I think a try it and see curve is the only reasonable idea, if the dose reductionnis too steep you can back up and adjust curve parameters to make it shallower. It is impossible to know parameters for a perfect tapering curve for every individual before they taper.
This paper is super interesting it suggests it is possible to objectively measure what is going on in ion channels using non invasive methods. It might be useful to do something like this to see if ion channel agonist compounds have improved things. The easy way to assess improvement in say ssri protracted withdrawals is just to ask patients about there subjective experiences though this non invasive profiling idea seems very science fiction. I think having something like this for every person who tapers is a little bit unrealistic.
https://www.sciencedirect.com/science/article/pii/S1053811915007788
mary H says
I totally agree that withdrawal should be at the person’s speed and their word should be accepted – they each know their own body better than anyone else. Many doctors have difficulty in accepting this and tend to impose their idea of ‘slow withdrawal’ – if they can get away with it! It takes a very strong ‘withdrawer’ to disagree with the very person responsible for prescribing the medication in the first place. Even amongst people who reduce, speed of withdrawal can vary a vast amount. In my opinion, this fact, be it through liquid form or tapering strips of the medication, HAS to be widely accepted. The “Try my way and if you fail we can increase the dose again” can lead to a very slippery slope.
Justin Oxley says
My feeling is a water soluable pva ssri infused tape would provide anyone who wants to taper from any ssri with enormous safe tapering flexibility which is just what you want I think. Having to fiddle around with syringes and liquids every morning isn’t the best tapering tool for a patient.
Anon says
Who is protecting who?
https://www.psychwatchaustralia.com/post/drug-companies-hide-safety-data-behind-foi-loophole-while-privately-donating-to-political-parties
Justin Oxley says
Some people are born with channelopathies and others have channelopathies thrust upon them.
https://youtu.be/QNszKKAtEwU
Daniel says
Im afraid i do not follow, how are you or we going to use plant compound supplements, you want us to self experiment? Surely all of these supplements have been tried before.
Dr. David Healy says
Daniel
No one has an answer to this. The post is one person’s effort to find what helps him and let others know rather than trying to set himself up as a guru or biohacker offering to cure you or others. We need to know what bits of this combination work for people other than J and what bits don’t or whether there are other things that help. J’s research looked at TRP receptors and herbs or other things that act on them and you and others need to do some research on these and see if anything jumps out at you.
The acid test for J will be whether some combination enables him to get fully off the SSRI he is currently on
David
Justin Oxley says
I would probably avoid putting ssris into groundbait they produce strange behaviour in fish. It’s quite peculiar and bizarre.
https://youtu.be/x67l3gwLMjU
Wendy Weissner says
Thank you for sharing.
Justin Oxley says
Later I’m going to try and regenerate my entire physiology like Dr. WHO or a Planarian Flatworm. If I think hard enough I’m sure that will definitely happen. Following my successful regeneration I am sure I will feel alot better.
Laurie Oakley says
I love that you mention Sulforaphane. It seems to have so many benefits. Joe Rogan interviewed Dr. Ronda Patrick where she goes into detail about a lot of the benefits and research behind sulforaphane. Sprouting your own broccoli seeds is not difficult.
https://youtu.be/2Yh4fjOFfDo
Justin Oxley says
I found I was unable to deal with all the nonsense that goes down driving on the roads so I decided it was wise for me to stop driving. You get told not to drive after a general anesthetic but no such advice is given to those with ssri protracted withdrawals. I think the dissemination of such advice might be wise.
The sooner everyone has self driving vehicles the better I think.
https://youtu.be/v8q0Z_veRg0
Justin Oxley says
This Sulforaphane supplement looks good, some of the cheaper ones only have 5mg per capsule. This one claims to have 45mg per capsule. You only see clinically significant results at 40mg or higher so look for those.
https://www.amazon.co.uk/gp/aw/d/B07WLJZJJR/ref=ox_sc_act_image_1?smid=A21QMITA5X7VXN&psc=1
Justin Oxley says
We want to get some control over our symptoms so look for data that tells you what supplements will do that. Homeostasis is alot like Biological Control Theory.
https://www.spiraxsarco.com/learn-about-steam/basic-control-theory/basic-control-theory
This is a good example of applied control theory, these rocket things use inertial navigation to sense changes which allows actuators to be adjusted to make trajectory alterations.
https://youtu.be/WR7B3re23og
Homeostasis is the Biological equivalent.
https://en.m.wikipedia.org/wiki/Homeostasis
Sean says
Is reinstatement advised for someone who has been off an SSRI for 9 weeks and has experienced withdrawals for 7, mainly insomnia, headache and waves of depression/anxiety? The full term of SSRI usage was just under 6 months
Dr. David Healy says
I personally wouldn’t reinstate but no-one knows what underpins SSRI withdrawal so no-one can tell you for sure
D
sean says
Is there typically a correlation between duration on the medication and recovery term? Symptoms during waves are debilitating and interfere with all daily activities. Only mild side effects were noticed on lexapro when dosage was raised from 10mg to 20mg due to miscommunication with the prescribing doctor. A stabilized continuous usage at a lower dose would be preferred over another tapering attempt as well.
Dr. David Healy says
You can have problems for the rest of your life from a few weeks of pills. That said its the close to physical work you put in to as it were reconnect the bits of your body that are more likely to help make life comfortable than returning to another SSRI – but its your call
D
Kevin says
I discovered valerian’s counteracting of SSRI cessation by accident. I usually make a valerian chamomile tea with one teaspoon of ground dried valerian root from a health food store per pot for insomnia. I had this before bedtime because I was having SSRI withdrawal after quitting citalopram 20mg/d… ie flu-like symptoms, strong electric-like twinges, poor coordination and of course the insomnia. It took all of those symptoms away and the effect lasts through the day. Valerian is fantastic stuff.
I found this via Google as I was curious if anyone else had noticed this and/or research the biochemical pathways responsible. Thank you!
Dr. David Healy says
There are some people linked to rxisk who might have an idea about what valerian does
D
Justin Oxley says
I serviced that request looking it up on Google I didn’t know what a GABA-A receptor was, it does get a little bit complicated. From what I read Valerian was the go to anxiolytic for many years and was safe along time before the introduction of Benzodiazepines and ssris which appear to have usurped its position. Unfortunately benzo and ssri drugs are overpowered and addictive so it makes one wonder if it was such a good idea to remove things like Valerian from the prescription system.
Justin Oxley says
I think this supplement might be helpful, I might try reading this book as well. I’m tapering off liquid Fluoxetine and have halfed the dose I was on in July and I’m staying at this dose for a while as withdrawal symptoms started to get noticeably worse.
https://www.optimallivingdynamics.com/blog/the-best-amino-acid-for-depression-anxiety-and-pain-dlpa-phenylalanine-supplement-brain-mental-health-benefits-dosage-foods-buy-adhd-tyrosine-uses-opiate-addiction-withdrawal-dopa-mucuna
Justin Oxley says
Every time I go out to pick up groceries this sort of thing happens to me and I nearly fall over just like R2D2 the celebrity robot. Plus I have the palinopsia now so the last time someone asked how long have you been seeing your new doctor I said about 30 minutes after I stopped looking at her. The hyperhidrosis is going to get embarrassing soon as we transition into Summer although I take Sage and other things which had evidence to diminish that, I’m like a walking lawn sprinkler which is a rubbish super power. There is unlikely to be a popular film franchise about Lawn Spinkler Man but I might find utility in a garden center or plant nursery. I found a forum with people discussing visual snow and palinopsia to diminish these visual disturbances it was suggested that Vitamin D3 8000 iu, Magnesium Glycinate, 20mg Boron and Vitamin K2 MK4 worked. I have not yet tried adding Boron and Vitamin K2 MK4 but I might do that to see if it ameliorate the palinopsia. Sometimes withdrawal symptoms make you feel like you are being mugged by an invisible assailant every day which nobody wants in their life.
https://youtu.be/geD8HxtQ_lY
I’m thinking if I could replace my brain with something more reliable like a cpu laid out on breadboards. This is a fun educational exercise but as you can get a micro like this on a 2mm square surface mount device these days it isn’t practical for embedded systems development. There are probably small micros in your toaster, microwave oven and washing machine these days they get almost everywhere as they are very useful devices. I think this breadboarding of cpus is very cool even if it has no real utility.
https://youtu.be/DLajNGYMC2o
Justin Oxley says
It became clear to me that those who are suffering from ssri protracted withdrawal symptoms would be likely to return to their GP for further guidance. I decided this isn’t always wise and can lead someone onto a dangerous path of further medications that will make matters worse. Managing withdrawals symptoms using herbal anxiolytics works well enough for me. I would suggest it would be quite foolish to accept a prescription for an antipsychotic to ameliorate withdrawals symptoms. My feeling is it is very likely that in many peoples withdrawal symtoms could be interpreted as a bipolar type illness which would lead one down a dangerous path. My suggestion to use herbal anxiolytics such as Valerin Root should keep people on a safer path during tapering from an ssri. Withdrawals symptoms should never be managed by feeding a patient antipsychotic drugs, I have seen that happening and the results for such further prescriptions are not good. Hopefully information like this will catch people with ssri withdrawals and make them reconsider returning to their trusted doctors/psychiatrist for withdrawals management advice. I had a worrying vision of many people in withdrawals states being fed dangerous antipsychotics.
Justin Oxley says
It appears quite evident to me that the symptoms that crop up in ssri withdrawals will significantly lower the threshold for burnout in those working in a demanding capacity such as doctors and nurses in Hospitals. I don’t think supplements will make any difference to this however they do make life alot more comfortable. In my experience I have no problem with thinking other than sometimes I appear to have racing thoughts, but physical activity is significantly curtailed due to fatigue and hyperhidrosis. For me life becomes alot more uncomfortable if I have to move around alot in a withdrawals condition. If we get a heatwave this summer I will want to stay indoors even more, I really couldn’t deal with the heat and it’s effects on me last summer. It is a good bet I will start to obsess about air conditioning later this year as I find the heat very oppressive. I have a Sage supplement already which should help reduce excessive sweating. I had a bit of a scout around for others which I don’t currently take I found reports that Schisandra Berry, Red Clover and Black Cohosh might help reduce the hyperhidrosis symptoms. I have not tried adding these supplements into my current regime. I might add in extra ones slowly to see if they improves matters. I have a worry that adding in too many things increases the odds of experiencing unintended side effects sometimes that could make things worse. Sometimes it is better to leave things as they are but you won’t know if you never try. I feel safer taking a bit of a risk adding in the occasional new supplement than I would approaching a doctor/psychiatrist for a synthetic drug solution.
Justin Oxley says
I have an unfortunate tendency to experience visions of bad things happening that might have ssri prescription as a cause. I probably have an overactive imagination already but the visions feel like real events and produce uncomfortable emotions in me. I have had a strong aversion to drinking alcohol for some time now only having the occasional beer. However because of the unnerving catatrophic visions I was having yesterday I bought 4 cans of brewdog beer in my local grocery store and drank it all, I had it in mind I would just have two and then stop but I drank them all. Later in my infinite wisdom I went back and bought 4 further cans thinking I would just have one more and keep the rest for another day which was wishful thinking as I drank all of those cans. Being drunk diminished the uncomfortable emotions. However I now take my daily supplement regime and it helps alot, adding in quite a bit of alcohol was not the best idea. As I sobered up later I felt nauseous but I wasn’t physically sick, I just felt bloody dreadful. Given my experience I would be strongly inclined to avoid drinking too much alcohol (over 2 pints of beer) if you are already taking quite a few supplements. At the time of consumption it feels great however the sobering up period was very unpleasant. My aversion to alcohol has been reinforced by yesterdays experince I won’t do it again. Brewdog beers are very nice but they don’t go well with supplements. So endeth todays lesson.
Justin Oxley says
I was curious to record ecg and sleep data so I could objectively observe if my use of various supplements had improved things. I have so far been able to see that my ecg data is much smoother with less rapid changes in heart rate than occurred previously and also my sleeping has obviously improved due to.taking a few herbal anxiolytics an hour or so before bedtime.
I was curious to see what was going on with my ecg the morning after my ill advised drinking session when I felt really quite awful spending most of the morning in bed in a fetal position. The ecg data showed quite obvious anomalies cf data captured for previous days. There were two large ecg hills where my heart rate rose rapidly and stayed high for quite a some time, I had never observed this in my ecg data before. I decided these two ecg humps correlated with my subjective experience of feeling dreadful. I hadn’t felt like drinking beer for ages but my theory is as I slept very badly on Friday night which is evident from the data I felt extra grumpy and thought beer might diminish that. Beer does diminish a bad mood for a time which is great but I decided that on balance the distressing after effects that followed my drinking significantly outweighed the good that was produced during drinking. I’ve decided drinking whilst on supplements is not very wise. I think having one or two cans now and then might be ok but probably don’t drink 8 even if it is a very nice beer.
I found quite a few papers which explained to me how the ethanol in my Beer occupies the pores in a variety of ion channels for a few hours. Ethanol does not bind strongly to the pores and is pushed out quite quickly which is just as well if you think about it. I do not understand why ethanol binds weakly to an ion channel pore whereas other chemicals seem to bind very strongly and are thus not easily displaced. I want to understand the physical mechanism which leads certain chemicals to remain strongly bound to a pore permanently altering it’s operation.
Justin Oxley says
I can report that I have got my sleep sorted out so there isn’t a problem there. It is just the times when I am awake that still appear to be a bit of an endurance test currently. I find mornings to be the worst times I take supplements in the morning and with lunch which appear to make afternoons much more comfortable for me. I’m not a morning person I tend to be a bit moody and irritable still. I take some sleeping anxiolytic herbs with my dinner and those work very well. I will just wait a bit before I taper off further probably at a reduced rate each week as from what I understand I can expect things to get more difficult approaching 0mg. I still don’t feel ready to go back to work really as I would get myself in trouble.
Stevie says
Hi
You story reminds me somewhat of what happened to me. I get into stressful situations with social anxiety and overthinking and have had a couple of anxiety and depression major life mental health crises.
I left technical jobs in 1996 and in 2010 due to stress with medication not helping and.overanalysing the problems, my reactions and possible solutions.
In 2018 my father’s health deteriorated and so did my mental, (and of course physical health) as I cared for him.
I ended up trying to fix anxiety with an analytical approach trying different supplements to no avail.
Dr put me on different ssri drugs which made my sleep worse and anxiety worsened to the point of not eating.
Ended up rejecting all ssri and couldn’t sleep. My wife intervened with my Dr, and they got me to take 75mg venlafaxine, which I took without asking what it was, as a last hope of help. I knew that if I knew what it was I’d look at side effects etc.. and create more problems.
After a month it gradually stimulated my appetite and eventually made me switch to what I now know was hypomania, being super confident and social (totally unlike me normally.)
Well unforyunately I eventually became more confrontational with some situations with people, and realised I was acting like an asshole to those around me, so decided to come off venlafaxine slowly over a few months.
Same problem as always, after mproving then eventually getting into stressful situations (like tking up a new job) caused me to have to raise the venlafaxine which I had tapered.
Now I have got down to 12.5mg and can tell you venlafaine is much more powerful than citolopram for me. Brain zaps set in very quick if you miss a dose of it due to its short half life, even with the XR version compensating a bit for this.
Anyway am now clear of all supplements and staying on 12.5mg venlafaxine for the immediate future. My main problem has been, and still is a need to hang on to things, and sometimes becoming obsessed with fixing something which really doesn’t need ‘fixed’. (Its what made me ‘smart’ at school, and gave me the drive to do well in exams.)
Anyway, I learned you have to take a leaf out of Buddhist teachings and as Ajhan Brahm once said ‘ Don’t worry everything is going to be out of control’.
The more you seek to avoid sleeping problems, anxiety, social embarassment, eating problems, the worse they can get.
Its the fact of acceptance and letting go that relieves the suffering.
You suffer because you seek self directed solutions, which creates more problems which you continuously struggle to solve.
Its OK to be anxious, its OK not to be the best at something , perfection can be a weakness and imperfection can sometimes be beautiful if you seek to embrace it.
(This is coming from someone who thought they had to be smart and impress people, as I was sure mostly that was what was really Important in life.)
My advice would be stop with the analysing of yourself, as it will never end if you follow this path. Go and find things you enjoy and live life, don’t work to live, but live to work at things you enjoy.
I wish you all best and remember none of are perfect, we all have problems, and thats OK.
There is only a solution if you think there is a problem.
Justin Oxley says
I’m continuing to try out different supplements that might help restore my health. I am trying out Forskolin, Artichoke extract, Calcium D-Glucarate and DIM.
https://youtu.be/IENDDX3r_0k
T. O. says
Hi JO,
Hoping you’re doing better.
8 weeks off of Citalopram and still having the withdrawal symptoms.
Think I’m going to try the Sulforaphane or Valerian root.
What do you think?
Justin Oxley says
I am doing differently it is difficult to say I am doing better, there are alot of different phases of different combinations of symptoms that I have experienced. This really isn’t what I wanted to be doing in my life but I’m now stuck with it I try my best to describe experiences as simply as possible putting particularly salient symptoms occurring at a time at the top of the list.
Kosta says
Are you drug free now?
Justin Oxley says
I hope I will be drug free around the end of 2023 or at least early 2024 once I finish tapering off from 0.8mg liquid Fluoxetine I was on in 12th February 2022.
It really depends on how low a dose is safe to jump off. I do not know exactly how low I need to be dose wise before I can completely stop taking this damn stuff safely. I’ll probably try at around 0.2mg and see what happens. If things go badly I shall resume with my water current tapering method and repeat until I reach a low enough dose so jumping off isn’t intolerable.
kat says
Wow thats a heavy load
doing some research for a friend on these drugs
hope U are ok now
kat
Brigit says
This was an interesting read! And I loved reading all the comments! I just wish I could find a similar article for SNRI withdrawal.
Justin Oxley says
I think there is a tendency to overcomplicated matters in alot of material that is spoken about trying to come off these drugs. I don’t like to bother listening to alot of hot air and pseudo scientific nonsense. I don’t know who the expert is for tapering off any of these drugs.
Are there any real experts at all, I tend to think of expert knowledge as precise and accurate knowledge. This whole subject really isn’t my cup of tea..
Valerie Hiers says
I was in a difficult marital situation with young children years ago. Married to an alcoholic/drug addict. I was diagnosed with anxiety/depression and prescribed my first SSRI in my late 20’s. Over the years my doctor would change my medication. I would do well for long periods, but each one would eventually stop working. Later in life went back to school, remarried, and was doing very well. I was asked often by my husband now why I stayed on these meds. Well, I was told by my Internist that I had a chemical imbalance and would always have to take these meds. I later began to distrust the medical system and these meds. It is now Dec. 2022. With two attempts to be rid of SSRI’s. I attempted to go off these meds three years prior to 2022. I was on Effexor XR at this time. First two months I seemed to do well, only dealing with brain zings. But within two months I crashed. I was unable to eat, had no energy, weeping, shakiness over my entire body, couldn’t sleep, I was not functioning. At this point my husband and family felt it best I go back on meds. This time I was put back meds Lexapro 20mg. This one was never as effective at getting me back to normal as some of the others I had taken over the years. But stayed on it because at least I was able to function although still had moments of unbearable anxiety. It is December 13, 2022. And here I am again. I tapered off Lexapro myself for three months. Looking back I should have been micro dosing. I did this all alone because my docs didn’t want to help. It has been almost three months off of Lexapro. At first it wasn’t so bad, only having some anxiety, and stomach upset but almost at the three month mark, and I’m not doing well at all. My symptoms have become unbearable, can’t focus, no appetite, I have to force myself to eat, restless legs, disassociation, shakiness throughout my entire body, can barely stand some days, nauseous, can’t relax to sleep at night or during the day, weeping, I am not thriving, only surviving. I am trying to continue with my choice to go off but very afraid of the medical community to help me. L There are very few medical professionals who understand what they have done to so many of us by keeping us on SSRI’s meds for decades. I don’t trust them to help me through this without adding more pharmaceuticals. I feel so alone in this journey. I believe many psychologists and psychiatrists as we taper believe we are having a relapse but my intuition says many of us are experiencing a withdrawal syndrome. I honestly feel so alone, our families don’t know what to do, the medical profession doesn’t know much more. This only adds to the fear of being able to successfully come off of this stuff. Thoughts? We
Justin Oxley says
I thought I’d pop back in here where I started and let those who might be interested know how I am getting on with tapering off liquid Fluoxetine and the use of supplements to mitigate withdrawal symptoms.
My general feeling is whatever you take whilst tapering there is no escaping all the symptoms completely.
I had been experiencing daily headaches for years. I began taking 500mg Vitamin B2 each morning around this time last year and the headaches stopped in June 2022. I continue to take 500mg Vitamin B2 each morning and I no longer get the headaches anymore. I still had dissociation and feeling dizzy whilst I tapered from 2.5mg down to 0.8mg from 1st April 2022 to 1st August 2022 which is when I was hit by a second flare up I have described in a later post. I forgot to mention that early during the flare up I would drink cups of old india valerian herb to alleviate the extreme anxiety that cropped up. I have a stock of the herb in my kitchen and add some into a French press and make it like coffee. During the tail end of this flare up I was consistently waking up early with burning hands and feet, tinnitus and other weird stuff until just mid December 2022. In October 2022 I began to take the DAO tablets to reduce what I thought were symptims of elevate histamine. I think doing this eventually worked as I no longer have those symptoms.
I remained at 0.8mg Fluoxetine until 12th February 2023 and then began tapering again. I am now just entering the 7th week tapering so I’m at around 0.7mg now. I have had increasing fatigue from the start of this year and recently I had a few days where I got a bit anxious and decided to drink valerian again. It is nice to have a stock of valerian herb in my kitchen cupboard.
At the moment I am sleeping perfectly well but my daytime experience is very flat, dizzy and dissociative. I prefer not to go outside unless I really need to.
Each morning I take 1000mg magnesium biglycinate, 500mg Vitamin B2 and 2000mg Omega-3 Fish oil along with half my dose of liquid Fluoxetine. I take 0.4ml Fluoxetine each morning and 0.4ml before bed using a 1ml syringe and my 250ml medcap bottle. I have Oatabix for breakfast with milk.
I also have a coffee to which I add a teaspoon of L-theanine powder each morning.
I am going to introduce taking a teaspoon of L-lysine and L-arginine in apple juice each morning.
At lunchtime I take 850mg NAC with 100mg Vitamin B6.
I alternate between taking 500mg (Sulforaphane and Indole-3 Carbinol) with (500mg Forskolin and 4000mg Artichoke Extract) at lunchtime.
I also consume 40mg Zinc, 610mg Fenugreek and 100mg Vitamin C with my lunch.
I will sometimes take Vitamin B complex and 8000iu Vitamin D.
I try to follow a low histamine diet so tend to have chicken or some sort of meat pie with salad for lunch.
For my dinner I have 4 large scrambled eggs and take 1000mg lemon balm, 2400mg montmorency cherry and 1000mg Ashwagandha which help me to sleep. I was drinking 200ml of tart cherry juice with dinner for about six months but I have stopped doing that now.
I will drink a whey protein milkshake in the afternoon. I will also have bcaas and msm whisked into apple juice sometimes.
Justin Oxley says
At the moment I have myalgia particularly in my neck and general all over body weakness. I have acquired a set of high density foam rollers which help alot with my neck pain. I also get occasional shooting pains down both my arms and the burning hands are back. I find applying glucosamine gel to my neck, shoulders and arms helps a bit.
I am having trouble with walking again so I just stay in bed most of the time. I’m just finishing my 9th week of tapering on Sunday from being at 0.8mg liquid Fluoxetine on 12th February 2023. I guess I’m at around a 0.6-0.7mg dose now. I am surprised my symptoms got worse after such at tiny dose reduction but it appears that they have. My condition is not a bad as it was in August last year but it is still quite painful. I find these new symptoms are lessened by the end of the day, it used to be headaches and a stingy body in the mornings this time last year now the symptoms are different with the main issue being myalgia and neuralgia. I’ve had a drink of apple juice into which I whisked a teaspoon of l-arginine and l-lysine along with teaspoon of bcaa powder. I think doing this helps. I also appear to have developed a lisp when speaking which is something that cropped up last August it is really quite peculiar. I was hoping that performing this very gradual taper would be a bit easier to endure than this, but I feel really quite uncomfortable at this time. I think this final taper might be quite difficult and I’ll probably be struggling to get out of bed for some time. I have found taking hot baths with menthol bath salts added helps, I would like to stay in the bath all day but the water cools down and I have to get out a go back to lying in bed. I really had hoped my life would turn out differently but I think I’ll be stuck like this for a considerable amount of time which is difficult to accept.
Justin Oxley says
I won’t be able to do very much at all today, I might be able to make it out to my local grocery store later in the afternoon but I’m not going to attempt that right now. My BP is fine at 128/76 my HR is a bit higher than usual in the prone position at 108 bpm. I’m not sure how I’ll cope dealing with symptoms like this every day for a year or more.
Justin Oxley says
As I reach the end of my 9th week of tapering from 0.8mg of liquid Fluoxetine I now find walking get even more difficult, I have had some visual disturbances crop up and my hands are very clammy.
I am now inclined to remain at the dose I have reached over the coming weeks rather than continue with the tapering as I don’t want things to get worse than they are currently.
I can always continue with my tapering at some point in the future when I feel I am ready to do so. I had expected this last tiny dose to be tricky to come off but I hadn’t expected to have new symptoms like this appear quite so soon. It’s all very frustrating.
Justin Oxley says
It’s the lack of control that really bothers me. I thought this final taper would be so gradual that it would be unlikely to throw up too many issues especially this early into it. I have a second backup bottle which I can dilute to this 9 week point so I could continue tapering again further down the line. I am annoyed that I need to remain at a fixed dose after only 9 weeks. I might have to keep relying on having a second backup bottle all the time. Once I can walk properly and get to my local Boot Chemist, I will be able to get another 70ml bottle of Fluoxetine so I could make up a future 150ml bottle. If I wait at this point until I feel better and then continue to taper it may be only 9 weeks until I need to repeat the same procedure. If this is how things will go it could be longer than a year before I reach a low enough dose to finally stop taking this stuff. I already thought tapering over a year in my condition would be a significant endurance test. I feel disheartened that I may have to stop and wait for a considerable time evey 9 weeks for things to stabilise, this is why I wish I had a tapering machine that could do it all for me. My thinking isn’t as clear as it used to be so I’d like to have the whole tapering process automated to make life easier.
I am in two minds whether to push on into week 10 and hope my symptoms don’t get worse. If the symptoms do get worse I may find myself unable to function at all and that wouldn’t be good.
Dr. David Healy says
J
This is interesting. What you are experiencing seems to me more consistent with withdrawal revealing the features of a peripheral neurolpathy than with the dynamics of hyperbolic tapering.
David
Justin Oxley says
I’m not sure what to make of it all I hadn’t expected symptoms to flare up quite so much after just a 0.1mg or thereabouts reduction over 9 weeks. I have decided that I can manage perfectly well using my existing 150ml medcap bottle staying at this dose. If I need to continue tapering using this bottle I can do the maths to arrange the rate of dose reduction remains at what I need. I have a second 150ml backup bottle diluted to the 5 week point just in case I have an accident with the one I am currently using. Having a machine would be nice to have so I could just program it to remain at a fixed dose for whatever time was necessary and then continue to taper at some point after that. Also sometimes during flare ups I have noticed that it is a good idea to take a booster dose sometimes to bring blood pressure down. I did that after I reached 0.8mg last August when I had the second flare up, so I boosted back to the 2.5mg to deal with the first two weeks and later was able to return to 0.8mg. The blood pressure increases in the first two weeks of August were rather disturbing. Perhaps having a machine with an IR blood pressure sensor and an alarm could let me know when a booster dose was required. Perhaps itbis just me that has these problems ?
Justin Oxley says
I was also pinned to my bed in a bit of a trace and panicing quite a bit in those first two weeks last August and when I did stand up I was having the swirly head weirdness so I often found myself stumbling about. Seeing my blood pressure going sky high when I was lying down being very still didn’t help and I really thought I was going to die. I get rather apprehensive now when the symptoms get worse after a dose change. I’ve not seen any scary blood pressure increases this week it’s remained steady around the 120/80 mark my pulse has been a bit high at 100bpm lying down.
Justin Oxley says
I’ll be sticking at this dose for some time, I just took a walk to my local Coop to pick up a few groceries and I’ve not felt this peculiar and distant from everything for a long time. Everything just feels so flat and unreal like all the life has been sucked out of it, it’s a terrible thing to have to go through. I now have a complete inability to experience any joy in performing any activity.
Justin Oxley says
I’m having trouble sleeping, the pain has become really quite severe, I agree that this looks like peripheral neuropathy. This time I’ve been seeing a dropping off in my blood pressure. I measured my BP go from around 100/70 down to around 70/40 yesterday.
Obviously I feel quite weak, dizzy and unhappy having to endure these symptoms. Tiday I might try boosting the dose back upto 0.8mg for a while to see if that improves things.
Justin Oxley says
I’ve been advised to drink plenty of water and stay in bed with my legs raised. So I’ll be returning to 0.8mg Fluoxetine and lying down with my legs in the air until my blood pressure regulation returns to normal.
Justin Oxley says
My BP is moving around quite alot but tending towards being quite a bit lower than usual. I measured it a few times and it is around the 80/45 mark after lunchtime. I’m drinking plenty of fluids my HR is about 90bpm in the prone position with my legs now raised. I suppose this variation in blood pressure must also be linked to the peripheral neuropathy somehow.
Justin Oxley says
Oh, I think the very low blood pressure readings may well have been due to the design of the new cuff I purchased for my machine. The cuff has a long metal buckle which is much wider than the cuff and it can slide up and down. I noticed having the buckle positioned to one extreme can make the cuff uneven when it compressess and this is when I get the very low BP readings. I can get a reading of 70/30 if the buckle skews the cuff but if better positioned the reading is 115/70. It is easier to overlook this sort of thing and fool yourself if you are feeling a bit grotty.
Justin Oxley says
Earlier on today I felt alot more uncomfortable than usual. I acquired a 500g bag of old india lemon balm herb this week so I made a mixture, a tablespoon of lemon balm with an equal amount of valerian herb in my french press. I drank a cup of the valerian/lemon balm mix about a hour and a half ago and now I am alot more comfortable. Some times in withdrawal really do get very painful and it is nice to have something that can help me feel alot more relaxed. I still find it hard to believe that a 0.1mg drop in dose over 9 weeks caused symptoms to get so uncomfortable this week.
Justin Oxley says
Today was pretty unusual so I didn’t move very much and just lay in bed. My parents have made it as far as Sydney and are staying in a place near Byron Bay. They sent me the pictures they were in Canberra last week, they have arranged to stay at various locations as they complete a tour of the entire Australian coast.
I’ve had my scrambled eggs and eaten my sleeping supplements and I’m going to bed early at 6pm as usual.
Justin Oxley says
You can check in at the Byron Bay Rahab if you have $30,000 a week to spare, that’s just predatory. I’m doing the best I can on a government payment of £330 a month. The DWP sanctioned me for not attending and appointment recently, I made it perfectly clear to them that I am unable to walk and stuff.
Justin Oxley says
I don’t think I’ll be able to manage to walk to the Coop today. My BP is a bit high at 140/90 and I feel rather wretched. I’m feeding myself a 0.8mg dose of Fluoxetine in the morning at the moment. I return to tapering if my current symptoms improve, I’m not sure how long it will be until I can do that. I’ve had better days than this.
Justin Oxley says
I was thinking about fluxgates again this week. Would there be any value in measuring the levels of c reactive protein in those in protracted withdrawal ?
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0194631
Justin Oxley says
I still have the dysarthria which means my voice still sounds very slurred when I speak and I am also looking a bit crook so I’ve had to cancel all my speaking appointments for this week. I think this reluctance of my tongue to cooperate properly with my brain is probably related to the myalgia and weak muscles. I could speak if I had some kind of speech synthesiser. I worked on speech synthesis using the kelly-lochbaum model of the vocal tract for my masters degree project at Liverpool University years ago now.
Justin Oxley says
I think they have made quite a few advances in speech synthesis now, they can even decode signals from the brain to drive a speech synthesis system. This is the sort of thing I was working on in 1994, my tutor was a Dr. C.C. Goodyear he had heart problems when I worked with him, but still went off to the local Hospital to get MRI scans of his vocal tract producing vowel sounds. Anyway now when I speak I don’t sound much better than this.
https://youtu.be/OvWeTJGrTnA
Justin Oxley says
I’m in really quite a grim state at the moment and having trouble typing this. I have reinstated my dose back to 0.8mg but sometimes I have felt the need to double that dose just to stop the erratic blood pressure variations I’ve been getting. I think that has stopped now as it’s at 117/76 and my pulse is 96bpm lying down. About a week ago I ate some spicy food which wasn’t such a good idea as I later developed a flare up in symptoms in response to that food. I had terrible wind and was in a very distressed state. I’m sticking to eating my low histamine diet that I know doesn’t cause me any problems from now on. The windy period has now abated but I’m still having real trouble doing anything much at all. I feel quite breathless and have shock like symptoms. I noticed my hands were burning and had secondary erythromelalgia with red blotchy hands. My hands got even redder when I had a had bath yesterday with my menthol bath salts it really is quite peculiar. I can also feel the fornication from the paresthesia on the left side of my scalp. Altogether things have got worse this week and I’m resting in the hope that this grim period will pass. I’m still finding I get some relief from resting my neck on a nobbly foam roller but I’m definitely worse now than I was in my previous report. I feel as if I am stood too close to a bonfire when I am walking about and this sucks the life out of me. I drank some of my arginine and lysine in some apple juice early this morning and followed that with some warm milk with honey and l-theanine stirred into it. I still have most of the previous symptoms I reported but I am struggling alot more. I am surprised that the tapering I began mid February has had this effect on me. I have an an appointment to see my GP Dr. Nazmul Mohsin at the Hamilton Practice at 7.52am on 22nd May. The only thing I would like to ask Dr. Nazmul Mohsin for is a prescription of Propranolol which I think may be some help as I think I may have some mild akathesia going on. I’m really quite miserable, but I’m doing my best to stay positive. I feel alot like I would had I been punched in the stomach and fallen over and hit my head on top of the burning sensations. I tend to distract myself from all this unpleasantness by listening to music. I hope this flare up doesn’t go on for too long as I’m really not enjoying it at all and I’m feel rather sorry for myself. It’s rather embarrassing but my right testicle has swollen up quite a bit, I believe this is probably hydrocele, it doesn’t hurt, it’s been slowly increasing in diameter for some time now. The other associated bits of that apparatus are also not working as well they should do, this is probably one of the most unsexy experiences that I’ve ever had it really is dreadful. I cannot really follow any conversations at this time so I’ll just keep myself distracted listening to music and get through the day. I’m hoping that the DWP will read what I have put in my journal and phone me as there is no chance that I can ride the bus into Harlow town center today. A phone call should be perfectly adequate qay to get them to understand I don’t get why they absolutely must see me present myself physically in front of them in order not to be sanctioned.
Justin Oxley says
I would really like to be able to complete the 20 minute walk to my local shopping area at Bush Fair and get my hair cut as it is getting long and I like to have my hair short especially when the weather gets warmer and I start sweating profusely when I walk anywhere. I was talking to my hairdresser fella about all this stuff that had happened to my just before Christmas, I popped in to get myslef a haircut after my last doctors appointment, I was feeling stronger back then than I am now. So this fella was very interested to hear what I had to say as he told me that he was prescribed an ssri some years ago after breaking up with his wife. He told me that he had felt suicidal when he tried to stop taking it and had been phoning his friends to tell them this, so I told him never to do that again. He also told me that he developed a drinking problem after starting the prescription and that he was drinking a bottle of wine each evening. He also told me that he has a young autistic daughter so I told him to look me up on this site. Also he told me that he had developed sexual dysfunction which he felt very imasculating. It was nice to find someone in the real world that I could relate to as the only people I have seen talking about this stuff have been on YouTube. I’ll probably go and get another haircut after my doctors appointment on 22nd May and ask my hairdresser how he is getting on. I did tell him he needs to get a liquid version of his ssri if possible and that he should taper off using a syringe very slowly using my water replacement method. I didn’t tell him that even if he tapers off very slowly over what maybe 3 or more years he might still have a very difficult time of things and that his capacity to continue to work might be affected.
Justin Oxley says
I think having my two drinks this morning has made me feel less miserable now which is good and I feel that can type better now. I wasn’t feeling so anxious that I had to resort to drinking my valerian/lemon balm tea but I felt quite uncomfortable due to the burning sensations this is most prominent in my hands, I think my left foot is burning a bit but my right one isn’t probably as I still have a bit of t2dm induced neuropathy in that foot. I was having blisters crop up on my right foot back in 2020 but since I have been taking my supplements, eating healthy and exercising when I can the blisters have stopped appearing. I had a t2dm blood test in the summer last year and this showed the t2dm had gone away. I didn’t want to take the Metformin that I was offered back in 2020, I found supplements that had dual utility both in helping with my withdrawal symptoms as well as diabetes such as Sulphoraphane. I started smoking again after being clear of that for some time, I didn’t want to do it but I felt that it helped me a bit, I’m trying my best to avoid smoking I won’t buy any more tobacco. Something I have found when I go into my local Coop which is about a 200m from my house is that I don’t really feel like talking to anyone as I hurt and they wouldn’t understand, years ago now I would be a happy go lucky type fella and chst to everyone to chat to everyone, now I feel like nothing is real and I just go in and get out of the Coop as quickly as possible. Recently at the checkout I was requesting some of the menthol filters to have in my roll ups, it is very odd I think it is called aphasia, I find I can say what it is I want. Instead I just point and say filters, picture of swan, blue and white flat box, give to me. I feel like a robot or something unable to experience any pleasure and just going through the motions it’s really horrible. I’m pretty sure having my two drinks this morning have released me from the earlier symptoms which were really very oppressive. I just wish there was something I could take to fix my other ailments. I do feel much happier now but not too happy nobody should be too happy.
Justin Oxley says
I forgot to mention that I have been applying Voltarol gel using both my hands to my painful neck just recently and this appears to be alot more effective than the glucosamine gel but sometimes I will use both. I cannot remember seeing my hands quite as red and blotchy as they are now when I put my left hand into the hot water to stir my bath yesterday the whole palm became very red indeed so the high water temperature increased the secondary erythromelalgia. Spicy food, high temperatures and stress can trigger the erythromelalgia. I found a site where a fella talks about supplements he has tired to cure his erythromealgia, some of the ones I currently take may actually make things worse based on what I read.
Justin Oxley says
This fellas site gives details of which supplements helped him with his erythromelalgia.
https://www.medicationsense.com/articles/2012/emsup.php
Justin Oxley says
The recent worsening of my symptoms may be due in part to the fact that I ran out of NAC about two weeks ago. I’m not completely certain if this is true or not, it may have been a combination of different factors, I don’t know.
I have just started taking 20ml of a concentrated tart cherry juice in the evening diluted in water. The concentrated cherry juice is better as 20ml is the same as 200ml of the one I was using previously. The concentrated juice comes in a 500ml plastic bottle so it contains the equivalent of 25 lots of 200ml of my previous 1 litre bottles which were big 1litre glass ones. So one 500ml bottle contains the equivalent of 5 of the 1 litre glass bottles I felt guilty about all the unnecessary waste I was producing buying the 1litre glass bottle. It is a much better choice ti take a concentrated tart cherry juice moving forward.
I am still undecided as to which combination of supplements is the best one as there are so many factors involved, this isn’t as simple as writing software where I can just look at the screen and change a bit of code to debug it, when you do that you see the effect of the change immediately.
I may decide to tweak my current supplement regime a bit based on what I have recently learned about the best way to treat erythromelalgia.
Justin Oxley says
I made it out to the Coop to pick up a few bits in my rather associated way, I really don’t like being this way but I cannot help it. Anyway the palms of my hands have now gone almost as red as they were when I put them in hot water yesterday. So whilst the arginine was soothing initially perhaps now it has triggered my erythromelalgia arginine is a vasodilator so there may be some truth in what I say.
This is a shame because up until now taking the arginine lysine combo in some juice has been very calming. My BP is also up at 130/90 and HR 113bpm lying down.
Thinking about what to take to diminish the erythromelalgia is probably a sensible thing to do. Also I don’t even want to smell any spicy food again, it is very strange this reddening if the hands has not really occurred before. I had plenty of the burning hands sensations back from last August but I don’t remember seeing my hands go quite this red.
I was feeling worse than this last night and found it very difficult to get to sleep as a result plus I was felt quite angry about my life and felt like shouting and swearing but I never do, I tend to keep it all in my head or I write it down quietly.
Justin Oxley says
I’m having a bit of a cry now as I just felt like it, I feel so exhausted but I have hardly moved today apart from a brief visit to the Coop. I’m fairly sure that I have the peripheral neuropathy but I’m wondering if I might have something like a TIA or stroke going on as well. I don’t have a drooping face or numbness down one side of my body but I feel so damn lousy. I may ask my GP if I could have another MRI scan I’m not really in the mood to be shoved into that white tube again and listen to all those soothing MRI sounds. I feel I would need to take some kind of sedative before I have a scan. It’s like a really terrible vibe I’m getting there must be a cause of it, it makes it difficult to even breathe properly and like when you are really grief stricken. I can’t wait for today to be over if I’m honest, I’d like to just go to sleep now and wake up tomorrow happy.
Justin Oxley says
I’m starting to wonder if using the Voltarol gel was such a good idea it did seem to soothe my neck and hand pain but I now have quite a bit of skin peeling off the back of my neck where I applied the most. I didn’t get this sort of thing using the glucosamine gel perhaps I will stick to using that one.
I’ve had my dinner early put in my foam ear plugs, silence is golden and taken my sleeping stuff, I’d like to get to sleep early, I don’t want a repeat of last night thankyou very much.
Justin Oxley says
At this time of the day it is dark outside and I actually feel in the best mood at this time than during all the other times that have happened since I woke up earlier today at around about 5.34am. I don’t know why thus is true, I would prefer to wake up feeling like this but everything is backwards at the moment. Actually last night this wasn’t the case I was in a terrible mood so it isn’t absolutely true all the time but I think it is true most of the time.
I am going to try and sleep now I had alot of trouble getting to sleep last night because I felt a bit angry with the DWP people trying to push me around.
Justin Oxley says
Yesterday I reached the conclusion that the doctors have turned me into a mushroom of some kind I’m not sure which kind exactly as I’m not a mushroom expert, but some kind of mushroom that has been kept in the dark about stuff.
https://www.youtube.com/live/oIGSOS5bexY?feature=share
Justin Oxley says
I’ve not been able to get to sleep and now my mood has changed I feel there is an evil presence in my bedroom it’s something akin to a harpy or succubus but it’s difficult to know exactly when you can’t see them and I have that sick feeling you get in your stomach right after you drop a priceless vase. I should have bought some garlic and hung it around the place to keep them away, this is worse than the windy event I had at the start of this week where the hot plumes of gas rose gently to the ceiling a bit like in a comsol natural ventilation simulation except this was flatulence.
My friend Philip from my secondary school has such events, he refers to these events as Jinn attacks, he became a Muslim like his Malaysian wife years ago. He was prescribed a number of different antipsychotics which made him worse apparently and is on Amisulpride now and he seems to be fairly happy with it. He refers to these drugs as witchcraft. Philip studied Computer Science at Brunel University. I talked to Philip quite a bit just before I came in here. He had quite a torrid time, at one stage he became convinced he was being followed by the FBI in Slough years ago and then later wrote a PhD proposal which he submitted to Edinburgh University but they put in Tindal Hospital in Aylesbury instead, I haven’t read the proposal. Philip is a nice fella and lives in Malaysia now with his wife. He got chatting to me from Malaysia and I told him about the troubles I had with the damn ssris and he told me about his damn antipsychotic experinces. We all used to go to each others houses when we were at school with our old 80s 8-bit computers, I had a Dragon 32 which wasn’t cool, Philip has a Sinclair Spectrum which was cool, there was a computer type coolness hierarchy, there were other geeky members of our group who hung out together. The non geeks had their own group and we referred to those individuals as the spanners. I eventually went to meet Philip after he returned to Iver with his wife to stay with his parents. Philip had sent me a laptop I didn’t need so I gave it to his mother. His father used to work in Pinewood studios which sounds like a nice job.
The evil presence has gone now I know these sorts of symptoms crop up during withdrawals along with quite a few others. Some of these damn symptoms probably don’t even have names yet.
I’ll have a go at getting some sleep now that the evil sprit has departed.
Justin Oxley says
Sorry a correction is required, Philip went to Cardiff University to study Computer Science and then completed an MSc at Dundee University in something similar with a fancy name. You can’t expect me to remember everything that’s why they invented computers to do it for us.
Justin Oxley says
Asprin seems to be the first line treatment for erythromelalgia, nice and simple. I’m trying Asprin out, I’ll take it for a while and then see if my hands go less red in hot water, not water that’s too hot obviously.
Justin Oxley says
I didn’t get up to much today really, but I am great at being in bed, I’m really starting to get the hang of this lying down all day lark. My BP was 133/77 at 4.45pm and 95/53 at 4.36pm and my heart rate has been quite erratic as well moving around between 81bpm and 94bpm. I’m changed my mind again and I think I am either a cat, mushroom or a bird currently or maybe some weird hybrid of all three. I would send someone medical round here to do some tests on me. I’d quite like some ice cream and a nintendo switch and a few games.
Justin Oxley says
My initial tests of asprin have been very positive, the burning pain around my body has diminished. I have tried running hot water over the palms of my hands which are still blotchy and they no longer flare up to go completely red. I’m going to order myself quite a bit of asprin from amazon. It obviously doesn’t fix the underlying peripheral neuropathy but at least it ameliorates the erythromelalgia which got really quite uncomfortable for me just recently. I still get persistent after images of my led edison lamps spiral filament when I look at it but making the burning pain go away was my main concern.
I am still going to go to bed early after eating a cornish pasty and washing that down with my cherry juice and sleeping supplements. Hopefully I should find it alot easier to get to sleep from now on.
Justin Oxley says
I wanted to get pure asprin from the Coop but they didn’t have any so what I’ve taken is actually anadin extra which has asprin, paracetamol and caffine in it. I would rather take plain asprin in the future as I think sometimes caffine isn’t always that good for me. I’ve taken the anadin dose every four hours and not exceeded the daily dose limit, I think I have had a slight increase in the volume of my tinnitus and I feel a little quesy but I’d sooner have this than the burning pain.
Justin Oxley says
I woke up too early around 3.20am with loud tinnitus and the burning has returned to some extent only the palms of my hands did not get redder when placed under hot water.
This is just like the early waking period I had which lasted from August to mid December last year, I hope I don’t have to go through that again. I don’t feel really sad which happens sometimes. The main thing which woke me up was the burning pain I felt that when I looked in my mirror I should have seen I had a ready brek glow.
My HR went from around 80 upto around 115bpm on standing and walking into the bathroom then dropped down to 68bpm after initially returned to the prone position before returning to a steady value around 85bpm, BP is now 128/82 I don’t know what my BP was doing when I stood up and walked into the bathroom just now I would guess that it dropped as in PoTs and my HR increased to compensate for that drop in BP, I observed this effect only it was worse in early December 2021 that time my HR was steadily increasing to around 160bpm when I walked anywhere. After walking just now my PI dropped to around 1.5 and has now gone all the way up to 11.5 indicating I am now in a more relaxed state.
I took some more anadin after I walked at around 3.40am. In the prone position my BP is now 135/88 and my HR is still stable at about 80bpm.
I did not get any bad vibes this time and I feel much better now. I will try and get myself to go back to sleep. The best thing to do during these type of events is to try and not to make things even worse by thrashing around and stuff, I focus on taking slow deep breaths in through my nostrils and lying down and keeping very still.
Justin Oxley says
The best thing to do is to remain still and imagine yourself to be a mushroom I think this morning I may well have been an oyster mushroom, it is difficult to know exactly without performing an MRI scan on my body and looking stuff up using Google.
https://www.youtube.com/live/UGtBi3pGXbc?feature=share
Justin Oxley says
I took my 0.8mg dose of Fluoxetine about an hour ago What is most apparent now is I feel a bit the way you would after a camera flash bulb you are staring directly at goes off in close proximity to you whilst simultaneously having one of those candiru fish swim up your urethra, it’s all numb genitals and purple blotches on my retina and God knows what else as well, it feels a bit like how you might expect to feel if God did turn up and he took a photograph of you. There is a general feeling that some kind of unearthly shock has passed through me. My BP is 149/97, HR around 76bpm now, PI is lower at around 5.6. I can actually think my heart rate lower whilst watching it’s value on my pulse oximeter, mmmmm lower my pulse I can. My BP went a bit higher over the last hour. On the bright side my neck feels much better but I still wish to continue to rest it on my nobbly foam roller and roll my head around periodically, I have a remnant left of the burning pain which woke me up early this morning. I probably won’t look like I’m having such a great time in that damn photograph, could you please go and point your damn camera at a mushroom next time please.
Justin Oxley says
The flash bulb going off in my head effect when I’m walking around has stopped now that it is the afternoon, it really was very unpleasant a flash would happen and I’d then be stumbling around in a daze and nearly fall over.
Justin Oxley says
This morning my neck decided to be more painful than I can remember, it made my morning miserable. I noticed that when I turn my head to the left and right extremes that there is a tremor occurring, I can feel the vibration in my muscles and I can see what I am looking at shaking due to the muscle tremor. I do not notice the neck tremor when my head is facing straight ahead as then the muscles are not tense. Some days I have no neck pain at all today wasn’t one of those days. I also see my calf muscles shimmer when I tense those by pointing my toes upwards. The neck pain is less severe now than it was this morning, I think applying glucosamine gel to the back of my neck has helped but it takes a while to work. I had no significant burning skin or flash bulb in my head effect this morning, I was feeling grotty due to the neck pain.
Justin Oxley says
When I tense up my arm muscles by trying to arm wrestle my right arm using my left both arms will shake quite dramatically. I didn’t have that before. I suppose the arms shaking when under tension is due to the signals to my muscles being disrupted due to the peripheral neuropathy ?
Justin Oxley says
The symptom of the day so far was a crushingly low mood, which really wasn’t very nice. I don’t think my mood has ever gone that low and my hands went all cold and clammy it was horrible. I decided it was time to drink some of my valerian and lemon balm tea about an hour ago. My neck was also very painful so I rubbed alot of glucosamine gel into the back of it and did the usual thing and rolled my head around listening to cracking sounds. The horrible low mood has passed now, I think drinking my tea has helped but I’m not happy enough to be smiling.
Justin Oxley says
The tea did make me feel much better for a while but now it is the mid afternoon things have got uncomfortable again, it’s not low mood this time I’m just feeling shock symptoms and a feeling that I can’t catch my breath. Perhaps this is akathisia ?
Whatever it is it isn’t much fun, I made another cup of tea and I’m waiting to see if it that makes this go away. My BP still seems fine at 126/70 but my pulse is elevated at 106bpm. I have also put vicks vaporub up my nose and inserted my peppermint oil inhalers into my nostrils as doing that seems to help.
Justin Oxley says
I also find putting red tiger balm around the entrance to my nostrils helps along with deep nasal breathing. The only problem with repeated application of tiger balm to the nostrils is that eventually it burns the skin and it will dry up and eventually fall off, I found that out last August. My cup of tea is working I feel much more comfortable 40 minutes after drinking it. I don’t know how much of the tea it is safe to drink over the course of a day but I’d like to be able to drink enough cups of tea to keep myself comfortable throughout the day.
When I was feeling lousy 45 minutes the ago now my PI value was around 1.5 but now it has gone upto 14, the higher PI value correlates with a more relaxed state. My pulse has also dropped to around 85bpm.
Justin Oxley says
I have felt somewhat better today at the end of a pretty grim week. I ran the following tests on myself outside in my garden walking up and down the path and standing with my feet together and my eyes closed. Doing these test I am able to see that my balance whilst it has improved is still not that great. I will begin to sway and eventually fall over doing the eyes closed test. I’ve felt more comfortable today. I wouldn’t try and complete the walk out to Latton Common at the moment as my gait is too unstable. Mushrooms don’t have these problems so I’m definitely not a mushroom.
https://youtu.be/XVGx_NZ1pJQ
Justin Oxley says
I’m not so good at the standing on my tiptoes test I end up stumbling about and flailing my arms around, the same thing occurs for the resting on the back of my heels test. However I think my walking and speech have improved today, but the symptoms wax and wane all the time so I may find them worse again tomorrow. The use of asprin has cut the intensity of the burning pain. I also got hold of some 100g tubes of Radian B muscle rub which is effective at soothing the neck pain when rubbed on the back of it, this cream is also good when rubbed on my shoulders, arms and hands.
I have an appointment with my GP Dr. Nazmul Mohsin tomorrow at the Hamilton Practice at 7.52am, I was hoping that I would be able to complete the 20 minute walk pop in quickly and see him and afterwards go and get my haircut. I think I will book myself a taxi for tomorrow as I may find completing the walk difficult.
Justin Oxley says
Today I woke up with very sore neck at around 5am so I decided to drink my special tea. The tea has helped alot now it is 8.30am and my neck is not so painful.
When I hold my right hand out and splay my fingers out wide and then relax them slightly my index finger vibrates quite a bit and my little finger is not far behind it in amplitude. My ring and middle fingers are variable but also vibrate occasionally. My thumb isn’t joining in at all with the others as he thinks they are silly.
My right foot vibrates from side to side when I tense and then relax the muscles. These tremors appear to be worse on my right side of my body, my left side has them but they are much less pronounced.
Justin Oxley says
I think I’ve had some level of akathisia show up again, it was bad on Monday when I saw my GP. I couldn’t stand to wait around afterwards for the hairdressers to open so I marched my way back home. I’m really not very good at waiting in queues or anywhere else right now.
Today I was really quite bad again, drinking three cups of my special tea during the day helped calm it down. I did see my BP go up quite high this morning, now it is a sensible 128/80 and HR 98 lying down. The thing is with the akathisia it does make me want to walk alot and all of the time but I also have an unsteady gait and the two are not compatible. I therefore decided I am safest being mildly sedated lying in bed.
Justin Oxley says
This week the most upsetting symptom has been my neck pain which has been so severe today I could barely catch my breath. I also noticed that I have a greater number of fasciculations occurring mainly on my left calf muscle. I also see alot of shimmering on my thigh muscles when I hold my leg up straight at around 45 degrees and then let my lower leg drop down slowly. When I turn my head to the left or right extreme the neck muscle vibrations are more intense than I can remember feeling before. The worsened neck pain appears to correlate with the increase in the amount of skin flickers I watch dancing around on my left calf muscle when I tense and relax it. Just before lunch today the pain went away, the leg fasciculations diminished and I felt better but the neck pain has returned again this afternoon along with the muscle twitching.
My BP is higher this afternoon at 140/80, HR 85bpm, when I was more comfortable this morning my BP was 126/76, HR 81bpm.
I decided to take 20mg of Propranolol first thing in the morning and at noon when I eat my lunch, I am not sure if taking this will work for me I’ll see how I get on over the coming week.
Applying Radian B cream and Glucosamine gel to the back of my neck and afterwards resting it on my nobbly foam roller and rolling my head around offers the most relief I can hope for at the moment, my neck is quite noisy when I roll my head making popping sounds. I decided that it might make sense to get myself a cheap TENs machine and some conductive gel to use to help soothe my neck pain. I will see how my neck is over the course of the next 2 weeks and then decide whether to buy a TENs machine, I found one that looks fairly good on amazon for £30.
As you might imagine my neck pain makes me rather miserable and I prefer to be left alone in peace and quiet at these times. I think taking the asprin 4 times a day must be working as the burning sensations on my skin have gone away now. The palms of my hands are still very red around the edges with their centers being the usual pale colour. Now when I apply hot water to my palms the central region does not also become bright red. Moving my fingers over my palms feels a bit like you might expect it to if you had earlier placed your hands in water that was a bit too hot.
I have a couple of 1kg tubs of Glowzon aloe vera gel, I find applying this gel to my legs, arms and face provides a pleasant cooling sensation which helps me to feel better when symptoms become more difficult to tolerate.
Often when I feel rough I will also insert my foam ear plugs as I do not enjoy listening to others talking loudly and stuff. My neck pain has now been dialed down a few notches and it is 4pm and time for my third dose of asprin.
The best way I can think of to describe how I feel when I go for a walk outside at the moment is it’s like walking around in a Zorb ball only it’s not fun it’s very uncomfortable. The Sun is out now and it would not be unreasonable to expect walking outside to be an enjoyable experience but it isn’t for me. If I were to walk myself out past Passmores Academy, across Southern Way and along the path which leads me out onto Latton Common currently I think that I could well pass out. I am hoping walking outside becomes easier next week now that I am taking the Propranolol.
Justin Oxley says
I began tapering on 12th February 2023 using the 150ml medicap bottle diluted to 1mg/ml Fluoxetine and I noticed symptoms flaring up towards the end of the 9th week 16th April. So I’ve had a bit of a rough time since reaching that point, I’m using my 5 week point 150ml bottle now. I will try to return to the 9 week (0.8ml = 0.7mg) point bottle after symptoms stabalise.
I am wondering if it might be worth trying an even more gradual taper when I feel ready. I could easily create a 500ml medicap bottle of Fluoxetine at 1mg/ml and taper taking 0.7ml each day and replace the removed liquid with 0.7×7=4.9ml of water at the end of each week. Doing this would produce a much more gradual taper than I had using the 150ml bottle. Reducing the dose to a point close to 0mg using a 500ml bottle would take a very long time indeed. I’d want to create a spreadsheet showing week x and the dose. If it takes 10 years or more to come off this stuff what is the point ? If I have a go at usingna 500ml bottle I may have to endure further unpredictable flare ups and riding the flare ups out is hard work ?
My neck pain is not so bad now I have the vibrating muscles at each extreme, for some reason looking up and turning my head as far to the right as it will go produces really very pronounced head shaking such that when I voice a fixed tone the tone modulated.
My experience of walking outside on what are now very pleasant sunny days has improved a bit but it is some way off feeling how it should. When I venture outside now I need to wear my dark polarised glasses as the brightness hurts my eyes. I would like to get back to being able to walk around Latton Common again without having the worry that I might pass out. I tend to be more confident about going for a walk in the afternoons, mornings are still the worst times for me.
Justin Oxley says
The Nerve Doctors channel may be of interest.
https://youtube.com/@NerveDoctors
The supplements they suggest to take to slowly fix peripheral neuropathy are :
Benfotiamine
Pyridoxal-5-Phosphate m
Methylcobalamine (vitamin B12)
Foliate
R-Alpha Lipoic Acid
Acetyl-L-Carnitine
L-Citrulline
One thing I am puzzled about is that the doctor talked about taking these supplements over a long period of time to repair damaged myelin sheaths around the nerves. The c-fibres are unmyelinated so if they are dysfunctional the cause must be present in the ion channels or transduction pathways. Taking the above supplements therefore probably won’t restore the c-fibres function.
I did read the paper below which suggests that taking l-arginine, l-carnitine and l-citrulline might be worth a try if you have pssd, it is not clear to me how this might work.
https://www.researchgate.net/publication/362504022_Post-Selective_Serotonin_Reuptake_Inhibitor_Sexual_Dysfunctions_PSSD_Clinical_Experience_with_a_Multimodal_Approach
The Nerve Doctors also suggest the use of near infra red light therapy to help heal neuropathy. I had a quick look into this and found the following site which sells led devices which can be applied to hands, feet etc. These devices are rather expensive for what they are.
https://ledtechnologies.com/blog/neuropathy-infrared-light-therapy/
I would have thought that a good old fashioned high wattage IR lamp would probably be effective and it is much cheaper at only £40. If you wanted to you could buy a few of these lamps and position them so that most of the body could be bathed in IR light.
https://www.amazon.co.uk/gp/aw/d/B09L8FBKTM/ref=ox_sc_act_image_10?smid=A1K0Q02H1CB3I&psc=1
Justin Oxley says
From Tuesday 30th May I began taking Propranolol at (10,10,10) for my morning, noon and evening doses. At the end of that week I was still uncomfortable so I upped the dose to (20,20,20) at the end of that week I felt not much change so last week I went to (40,40,40). Now at this dose I became much calmer but I became so relaxed that I was fast asleep at 3pm in the afternoon, waking around 5pm still very tired and quite disorientated.
Yesterday on Monday 19th June I decided to go to the dose pattern (20,10,10) and whilst I was most uncomfortable first thing in the morning my afternoon was much better.
Today I’ve felt the akathisia increase again so I am now unsure if (20,10,10) is the best dosing approach. As I sleep for about 7 hours and when I wake the evening Propranolol dose has presumably worn off, I am therefore inclined to increase the evening dose to 30mg such to give a dose pattern of (20,10,30).
I think the ideal solution would be to have a wearable infusion pump deliver a steady stream of Propranolol intravenously such that a total of 60mg is delivered in any 24 hour period. This is not an option I have avaliable to me.
I do not want to be too agitated to sit in my hairdressers chair, neither do I want to fall asleep in the chair.
I will continue to try out different combinations of doses of Propranolol until I find the one that best works for me.
Justin Oxley says
I continued taking (20,10,30) doses of Propranolol and this enabled me to feel comfortable enough to complete a few test walks out onto Latton Common to feed some of the ponies this week.
These ponies are quite charming and alot of them are tethered with chains at points around the field such that they cannot interact with each other and they have no access to any shade which can’t be very nice for them in this hot weather. It’s got as hot as 31°C over this last week. I am not a pony expert and some of the facial expressions they pull at me are difficult to understand.
There is stocky black pony with a white stripe down it’s nose with a rather brazen personality (pony type SBP-BP), he/she will raise it’s lip at me after I have fed it. I think it finds the smell of the Radian B cream and Glucosamine gel I have applied to my hands, arms, shoulders and neck unusual.
A black pony of smaller build is next to her this one has a much more unassuming and demure personality type (pony type BSB-UDP) but she still likes apples and carrots. There is an untethered black and white one with a more slender athletic build (pony type UBW-SAB) that homes in on me with a shy foal in tow with scruffy curly hair (foal type S-SCH). When I present apples and carrots to these two the mother will eat the lions share of the damn apples and carrots and drop apple and carrot mush over the back of her foal. The birds do a better job of feeding their offspring than this black and white pony and it has a much larger brain than a bird.
I suppose there is more than enough grass around for her foal to eat, the more luxurious food items are the sole preserve of the adults she would probably drink a bottle of wine if I provided one. Ponies which have foals with them are females and they would probably drink a bottle of wine if I provided one.
I can’t tolerate any alcohol these days, it doesn’t do what I expect it to do. I’ll drank a whole bottle of white wine earlier this year in an attempt to put me into a jovial mood at a BBQ we were having and it did nothing. After drinking this wine I passed out on my bed and missed the entire BBQ. I woke up late a night and reheated the fish the chefs had prepared and ate it.
We do BBQ some very nice sea bass which we get from the fish man who turns up outside Nazeing shops on Saturdays, I ate one yesterday I just can’t drink any beer or wine now and join in socially.
During this last week I felt I still had a bit of akathisia but I decided to conduct some sunbathing experiments anyway.
I just sit in my back garden on a high backed metal chair facing east in the morning. These chairs are just right to soothe my neck which is often sore. The thin top slat of the chair is perfect to support my neck whilst I sunbathe.
For my sunbathing experiments I wear a wide brimmed hat which has a neck flap at the back and some ATTCL polarised black sunglasses.
I ran my sunbathing experiment last Thursday.
For my first experiment I had no sun cream on, I looked at a point just above the Suns expected trajectory. I saw floaters and some tiny sparkly particles would appear out of nowhere dance around erratically as they flashed colourfully and then disappear, I am not sure what these are. I also saw birds and planes flying about and I pretty sure those are real.
Now after perhaps 15 minute of my first experiment I began to feel more agitated so I returned to lie on my bed upstairs and measured my BP at 154/90, HR 93. I hypothesised that the UV in the sunlight may have caused the akathisia to get worse. My BP returned to a more sensible level after I rested on my bed for the rest of the morning.
In the afternoon I decided to apply SPF 50 sun cream to my body and repeat the experiment. I felt no increase in agitation when sunbathing wearing the sun cream. I observed no increase in BP wearing sun cream. I concluded that wearing sun cream is a good idea if you have akathisia and want to walk around outside if the sun is beating down.
I walked to my hairdressers at Bush Fair on Friday afternoon, on arrival I was sweating quite badly and my eyes were stinging as sun cream had got into them. I have ordered myself several sweat bands for my head and wrists to deal with this problem. Whilst I was sweating alot I was able to sit still in the chair at my hairdressers and have my haircut.
This time I got my haircut by a woman who explained she had some problems with her eye muscles, she told me she felt a bit dizzy when she moved her eyes from looking at the back of my head to looking into the mirror. She also told me a friend of hers had the rare disease Myasthenia Gravis and had her thymus gland removed and was given drugs which didn’t help much. Apparently plasma exchange is an effective treatment for Myasthenia Gravis and her friend was having that done today. Plasma exchange treatment has to be repeated every month or so as the positive effects it produces wear off quite quickly.
From what I have read I understand that this condition is cause by a faulty autoimmune response that effects the way nerves talk to the muscles, the symptoms are similar to those seen with peripheral neuropathy. A swollen thymus gland can be observed using either a radiograph, ultrasound, CT or MRI scan.
Following my haircut I had a wander around The Harlow Angling Center, usually I would be very enthusiastic to search around for tackle items but I just felt insouciant which pisses me off. Nothing is fun anymore. I grabbed some milk, apple juice and a few pasties from the Coop and walked home.
The fasciculations in my upper thigh muscles are very pronounced when I sit on my sunbathing chair and raise and lower my lower legs. The left calf muscle also has a sea of flickers the right one has the odd flicker but nothing like I see in the other muscles.
I do not have neck pain this afternoon, I can tense my neck muscles up and my head will not vibrate much when the neck pain is absent. When the neck pain is bad and I tense my neck muscles the vibration of my head is much more pronounced.
I still get a mounting sense of unease when I am in a queue at my local Coop or anywhere else where I feel hemmed in, I can feel quite dreadful by the time I reach the checkout and this effects the manner in which I speak to the checkout girl I can be rather curt with her.
Justin Oxley says
Walking for me is a bit like being drunk only the fun part has been supplanted with an uneasy feeling. I also still sweat too much even though it is cloudy today, but some ponies still got fed apples and carrots today. My muscles do not seem to have the endurance capacity they once had and I get tired quickly when walking now.
I would like to have a solar assisted cooling hat which could direct air onto my face. My proposed device would also have a head mounted heat exchanger block with attached peltier devices and a small pump to circulate coolant from a reservoir that sits in a small backpack with a decent powerbank battery. I have a 30000mAh powerbank for my phone which is handy as I just ran out of electricity. I would probably look for some very low diameter (capillary) silicone tubing and attach it into the inner surface area of the hat such that it follows a spiral pattern the capillary tubing exits the apex of the hat with many of them feeding into a larger diameter silicone tube through a plastic adaptor, this tube then enters the peltier heat exchanger block. The hot output liquid from the head needs to be cooled before being returned to the reservoir so having some radiative cooling fins with fans mounted to the sides of those fins would dissipate the heat. Once the liquid has been cooled in the block a large diameter silicone pipe returns it back into the coolant reservoir in the backpack. The pump which drives the cooling hat would be mounted to the side of the reservoir.
It would be quite simple to create other skin hugging devices which contained a similiar network of capillary tubing such that a subjects temperature stimuli responses could be investigated. You could even incorporate haptic devices which would allow for vibration responses to be investigated. The problem here is that you don’t want to cool/heat the entire surface area of skin all at once, you want to be able to be able apply thermal stimuli to an array of known points on the skin and record the subjects response to stimulus at those points. It might be possible to employ a system of switchable microvalves to allow for this to be done.
The problem here is if you only drive a single capillary at a time the rate of fluid flow through the heat exchanger will be far too slow for the liquid to be cooled effectively. I therefore propose that having some kind of network of switchable skin contact heat pipes would solve this problem. The heat pipes in contact with the skin should be switchable from insulator to conductor as required. I’ll have a think about how this might be done.
Justin Oxley says
My parents are in Ceduna now they have visited and stayed in alot of places as they travelled around the coast of Australia. Unfortunately I would not have enjoyed being cooped up in a car with them in my condition.
I’ve recently been enjoying riding around on Harlows cycle paths on an eBike which belongs to a friend of mine who is away visiting his family in Tunisia. The bike is foldable has 14″ wheels and a 350W motor and a top speed of 20mph. I feel more comfortable riding this bike than walking anywhere at the moment and I can easily take this small bike into shops which is handy.
I had an accident riding the eBike yesterday, I turned left off the cycle path and shot across a park near The Stow and after traversing the park I tried to launch myself off a high curb into a car park. Unfortunately when you do this on an eBike at full throttle whilst leaning back in the saddle the rear drive wheel flips the bike over. So I fell off the bike in the car park and damaged my right knee.
I felt a bit dizzy for a while but was soon able to continue my ride once after I felt better. The eBike does cope very well climbing inclined areas in the town park but I couldn’t manage to do this.
https://youtu.be/U3wlAhwvjOk
I had quite a limp today and I couldn’t walk around much as it was very painful to bend my leg, I had to climb the stairs one step at a time. The knee pain had diminished at 5pm and I was able to go out on the eBike around Nichollsfield and then under the A414 to follow the path upto Latton Common Road. I am careful not to jump off any high curbs, I’ll stop and push the bike along if I can’t find a ramp now.
I’ve ridden along quite a few of the cycle paths now all over the town. Yesterday I found the cycle path next to the river Stort that eventually leads to Dobbs Weir. I didn’t ride all the way to Dobbs weir though as my knee was too sore.
I am not sure how well the Propranolol is working, it has lowered my HR to around 70bpm and my BP has mainly remained in the 100/60 – 120/70 range.
Justin Oxley says
The eBike is now being used by my Tunisian friend who returned from his holiday on Saturday and needs it to get to and from his place of work every day.
My familial interaction occurs mainly through occasional emails, my parents are now in Renmark South Australia, they are staying in a Riverside cabin.
I have neuropathic pain which means my brains thalamus is being flooded with too many signals from misfiring peripheral nerves all around my body. Neuropathic pain leads me to suffer the following affective states.
Working memory dysfunction, impaired cognition, decreased appetite, depression, anhedonia, disruptions to sleep cycles, and impaired familial and social interaction.
To get some idea of what is going on you need to understand what the thalamus does. To make a simple computer analogy my thalamus is being overwhelmed with too many interrupts.
https://my.clevelandclinic.org/health/body/22652-thalamus#:~:text=Your%20thalamus%20is%20your%20body's,%2C%20consciousness%2C%20learning%20and%20memory.
Others in my position have accepted a prescription for Lyrica to treat neuropathic pain, however there is a lack of evidence that the drug is effective.
In November 2018, the Supreme Court of the United Kingdom ruled that Pfizer’s second patent on the drug, for treatment of pain, was invalid because there was a lack of evidence for the conditions it covered – central and peripheral neuropathic pain. From October 2015, GPs were forced to change people from generic pregabalin to branded until the second patent ran out in July 2017. This cost the NHS £502 million.
My feeling is to try out a non drug based analgesic method to diminish the neuropathic pain.
I still observe a shimmering sea of fasciculations which is most prominent on my left calf muscle. If I apply a topical analgesic cream to my left calf muscle over the next few weeks I would be interested to see if the frequency of these fasciculations decreases.
Having access to the eBike last week made a big difference to my personal mobility and I would like to have one of my own. I should be entitled to receive PIP payments so I will be applying for this soon.
Justin Oxley says
Over the past few weeks I have noticed an increase in my skin tingling which is most obvious on my hands. The tingling is different from the burning and may be a sign of peripheral nerve sensitisation as they try to repair themselves. I’ve also had the tinnitus get alot louder recently.
Today my BP has averaged 120/65 my pulse has been elevated averaging 94bpm whilst lying down.
I think the akathisia I obviously had around the end of May has gone I have been taking 50mg P5P and Propranolol doses (20, 20, 20) mg at my breakfast, lunch and dinner times.
Justin Oxley says
I was driving a boat around the Norfolk Broads from Saturday 2nd September to 9th September. My parents booked a boat called Fair Duchess 2 from a Wroxham boat yard.
Steering the boat around is quite simple we travelled down the river Bure and as far up the river Ant and Thrune as possible. My father has Parkinsons so cannot move quite as well as he used to and my mother had a triple heart bypass operation a few years ago so moorings were completed slowly a carefully.
Most of the time I was in control of the situation to some extent. I was able to catch a few skimmer Bream out whilst moored at Womack Dyke on the float using sweetcorn in the late afternoon once it was cooler. I managed to subdue a much bigger Bream in the morning when whilst moored at Coltishall Common and later had some decent Rudd and Roach on bread from Hoveton mooring in the evening until a large Pike showed up and decided to try and eat the hooked fish. The water is about 7ft deep and very clear in the upper Bure so we were able to see the Pike very well.
I had a few problems caused by the hot weather and occasional tinnitus, I was comfortable fishing in the early mornings and evenings. I feel better than I did earlier this year, I still tend to have a sore neck and tinnitus in the mornings but it was much worse back in May/June this year. Now when I tense the muscles in my neck the magnitude of the vibrations is less than it used to be.
Voices were raised occasionally during mooring but nobody fell off the boat. It is difficult to say precisely if taking the neuropathy supplements is helping me, I still have the fasciculations on my left calf muscle. I will continue taking the supplements and see what happens over the next few months.
Justin Oxley says
The main symptoms which are bothering me currently are :
Cervical dystonia, it’s more like myoclonus as I don’t actually get the full head jerking thing I just get constant tiny neck muscle vibrations.
Also myalgia most obviously in upper body and arms.
Anhedonia in all activities which is disturbing I would like to feel some enthusiasm for life again.
Taking half a 40mg Propranolol each morning and evening before sleeping, I go to bed early around 7pm this seems fine at the moment. Also I will take 3x300mg asprin before going to bed which banishes the muscle aches. The palms of my hands are still red from erythromelalgia but they don’t go completely red when immersed in hot water now that I take the asprin, the tips of my fingers feel burnt. My feet appear to be doing better than my hands they do get occasional itchy skin patches on them but I haven’t seen them go red in a way like my hands.
These symptoms are different to what I had a year ago when I remember being very tired. I put the tiredness in early 2023 down to the previous 5 months from August to December 2022 during which I didn’t sleep well and was waking up every morning with burning hands and tinnitus around 2am. This occurred after I reached the 0.8mg tapering dose. My feeling now is I should have remained at 0.8mg last year in order to recover, tapering down to 0.7mg from mid February to mid April 2023 set off a load more of uncomfortable symptoms.
I have tapered from the start of November 2023 to now going from around 0.7mg to approximately 0.6mg and have not had any of the more disturbing symptoms I had after mid April 2023. I particularly didn’t enjoy the low mood episodes I think those periods are just like the low mood experiences people suffer with bipolar disorder when afflicted as such the best solution is to lie down and wait for them to pass. The erythromelalgia appeared for the first time after I ate some spicy food, a feeling of being under a patio heater and flatulence complemented the visual ambiance.
Now I think it would have been better to give my mind and body a damn rest for tapering in 2023, however introducing asprin has helped me and the Propranolol and p5p banished the akathisia I had quite strongly in May 2023. It would have been impossible for me to relax and enjoy fishing on the Broads this September had my akathisia problem not been rectified, with akathisia I would have probably fallen off the boat. It really is very unplesant being unable to sit still whilst your mind rushes about in futile ways.
So my successful thwarting of erythromelalgia and akathisia made me feel confident to try a mild taper over two months from November 2023.
Last week I got myself another 70ml bottle of Fluoxetine liquid which has a concentration of 4mg/ml. I syringed 60ml of the liquid into a 500ml medcap bottle and added 420ml of water to produce a 480ml 0.5mg/ml bottle, I will use this bottle to create other 140ml bottles I hope to use to taper next year.
The idea is this, I seem to be ok having tapered from 0.7-0.6mg over the last two months, I will continue to taper to reach 0.5mg at the end of February 2024. I will see how I am at this point and perhaps wait a bit.
I would like to reduce from 0.5mg to 0.0mg over 10 months if possible by dropping 0.1mg every 8 weeks. However this is linear and symptoms may get worse as I reach 0.3mg for example. If symptoms flare up I will create a 0.25mg/ml 150ml bottle and try dropping 0.1mg every 16 weeks. I think this is a sensible way of tapering off the last 0.5mg.
My earlier understanding of the hyperbolic tapering plan is it was an attempt to make the symptoms of tapering fairly constant throughout the process of dose reduction. In my experience symptoms get alot worse for later reductions in occupancy.
I am less tired than I was in early 2023, the swirly head symptoms I was getting in August 2022 are thankfully absent. So by some measure I am better however not fully so, I still need to rest my neck on a spiky plastic ball to soothe it.
From my limited understanding each reduction of 0.1mg where I am dose wise represents a 3% drop in occupancy, so 0.6mg is about 18% receptor occupancy.
From July to October 2021 I tapered linearly from 5mg to 2.5mg which represents a drop from 65 to 40% (25%) receptor occupancy, following this I experienced a flare up which lasted only two weeks from the last week of November to the second week of December 2021.
From 1st April to 1st August I tapered using the water replacement method from 2.5mg to 0.8mg which represents an occupancy drop from 40% to 24% (16%). The flare up I had this time was much more severe and lasted 5 months.
You might expect the second drop in occupancy being only 16% compared to 25% would produce a milder flare up in withdrawal symptoms but this was not the case.
I would not try to reduce from 0.5mg (15%) over 3 months as for my earlier 5mg-2.5mg (25%) tapering given my experince as I believe the following flare up may last longer than 5 months. I am aiming to reduce from 0.5mg over 10months initially however if things get rough this could be extended to 15months or more.
I am not sure what is going on here, it appears that the history of tapering causes a cumulative increase in sensitivity for subsequent taperings which makes symptom flare ups become progressively more severe over time.
I’ll continue with my tapering, I try to take the neuropathy supplements but I don’t take them all every day. I read that Quercetin and Bromelain can ameliorate neuropathic pain so I take 500mg and 156mg of those each morning.
Dr. David Healy says
Justin
I think your case close to proves that the hyperbolic idea does not apply to all people. Some perhaps but you look like you have a neuropathy and the question is having persisted for so long tapering in the way you have whether its time to take a different approach.
David
Mr Justin Oxley says
I keep waking up at some time after midnight, it’s the neck pain this time rather than the burning hands and tinnitus.
I have a vibrating massage ball called the Vulken Acusphere which is very soothing on my neck. I still can’t get back to sleep even after resting my neck on the Vulken for an hour or so. I take a couple of valerian tablets as well, it’s very frustrating.
I’ve seen another flare up of symptoms this February. I’m hoping this doesn’t get worse in March.
Tapering gives me the creeps I’ve had the usual stuff with blood pressure increases and mood swings during the day. Propranolol is useful to stop the BP rises. I think taking the Asprin is helping to fend off the burning sensation stuff as well.
I eat eggs with salad in a tortilla wrap for my breakfast and beef mince and chicken with salad in a tortilla wrap for my lunch. I will also snack periodically on cheddar biscuits with soft cheese on them. I’m less keen on exercising at the moment as I just don’t enjoy it. I tend to go to bed quite early at 5pm and I will sleep well until I wake up very early in the morning.
I won’t taper any further from 0.5mg Fluoxetine until this flare up is done.
Justin Oxley says
Apigenin looks like it might be helpful to treat neuropathic pain. I’m going to try taking some at the standard 100mg dose to begin with, the worst it wiĺl do is send me to sleep.
https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1111/bph.15574
Mr Justin Oxley says
The paper below appears to show that Apigenin is just as effective as Imipramine. I know which one I’d probably opt for given the choice.
https://www.mdpi.com/1420-3049/27/24/9055
I’m still in a flare up and my anhedonia seems to be even worse atm. I also get pain in my fingers when I touch things which I guess must be hyperalgesia.
Mr Justin Oxley says
The Apigenin is certainly helping me to sleep, I also think it has relaxed the muscles in my neck making it less painful. I will continue to take it in a dose upto 800mg a day and see how I get on.
Luteolin should help diminish neuropathic pain according to this paper, I may try taking this as well later this month.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10016360/
I am still suffering from the mood lability and dizziness when I walk anywhere. I am surprised how such a small reduction in dose from 0.7-0.5mg over three months has noticeably made me feel quite alot worse.
Dr. David Healy says
Justin
Good to hear. See Jon’s comment. What do you make of the very different course he has had to yours? Might it have been better to reduce drastically rather than protractedly?
Am fascinated by Apigenin – but also worried. Have never liked the taste of chamomile tea so haven’t had it and can’t comment on its Apigenin effects. But all of the SSRIs and Gabapentinoids get marketed as relieving neuropathic pain but appear to do so – or at least the jury is still out on this one – by further damaging the nerves that are in pain.
Is Apigenin likely to be any safer? SSRIs after all also come in the form of St John’s wort – which sounds harmless but isn’t.
David
Mr Justin Oxley says
After examination of the palms of my hands using my Fancii head magnification device on 3.5x I could see the capillaries and the redness is actually made up of blotchy groups of capillaries, it isn’t a homogeneous distribution. So I read the paper below which looks at the histology, I don’t have any problem on my feet it is just on the palms of my hands.
https://www.researchgate.net/figure/Black-white-Area-of-erythromelalgi
A better tool for examination of my secondary erythromelalgia would be a dermatoscope.
I could buy a Smartphone dermatoscope from amazon for £160. I don’t really have £160 to spare my Fancii head magnifier only cost £20.
I would like to record images of my erythromelalgia on my phone each week. If I was able to do that then I could assess if there is any improvement in the condition over time.
Mr Justin Oxley says
I do not understand why the secondary erythromelalgia appeared when it did in May 2023. The first indication of it appeared after I ate some spicy food which I don’t usually eat. At that time it felt like my whole skin was irradiated like I was sat under a patio heater, after I started taking the Asprin this radiative heat sensation disappeared. I’m still left with red hands, prior to taking the Asprin my hands would go completely red when placed in hot bath water. After I took Asprin my palms red flaring response to hot water was abolished.
Mr Justin Oxley says
I got myself a box of ‘Sleepeaze’ from Boots Chemist in Bush Fair yesterday. I also picked up my prescription of Propranolol and a few boxes of Asprin as I had run out.
The lady in Boots would only let me have one box of ‘Sleepeaze’ so it won’t last very long. I slept very well after taking the Diphenhydramine Hydrochloride but did wake up early in the morning again but I wasn’t feeling as terrible as I usually do. I took a couple of Apigenin and managed to get back to sleep and I woke up around 6am. I’ve had my breakfast and now I am having a nice lie down.
Mr Justin Oxley says
Could a desktop electron microscope like this be used to determine the density of small fibres in small fibre neuropathies ?
https://delongamerica.com/lvem5/product-details?gad_source=1&gclid=Cj0KCQjwq86wBhDiARIsAJhuphkHYFetQ-n6FrXNT4l9aV_6jdr6a6i90oVS8J_oQnB0dOk3SeG7vXEaAl2DEALw_wcB
I’m amazed that there is a desktop electron microscope which has TEM/SEM/STEM and ED modes of operation. I dont know how much Delong sell it for.
The Leica VB6 UHR I worked on from February 2001 to April 2004 is an electron beam lithography machine which had originally been a Philips SEM from the 1980s hence alot of the electron optics code was written in 1980s PASCAL. The original SEM had physical knobs, buttons and sliders which varied lens currents etc. The ebeam machine had alot more complexity and called the old PASCAL electron optics functions through remote procedure calls from C code. The Leica VB6 UHR was sold to customers for about £1.5M.
Mr Justin Oxley says
I’ll switch to taking 25mg diphenhydramine around the end of April. I’ve still been feeling a bit rougher than my usual baseline recently so I’d like to feel better before I try doing something new. I will stop taking the 0.5mg Fluoxetine in the morning a week before I before I start taking 25mg diphenhydramine before bedtime.
Mr Justin Oxley says
I think my neck pain and neck muscle vibrations are worse, I don’t understand why it took 3.333 months since I last tapered for this to show up. I reduced the Fluoxetine dose from 0.7mg on 6th November 2023 to arrive at 0.5mg on 29th January 2024. I haven’t adjusted the dose since then.
I was hoping that the symptoms in this fourth flare up would diminish with time
I am reluctant to make a switch from taking the 0.5mg Fluoxetine every morning to take 25mg Diphenhydramine every evening whist my symptoms are this severe..
I have a neck which makes the sound of popping candy when I roll my head around. The sounds are much louder than my tinnitus which has a frequency of about 7kHz, I matched the tinnitus frequency to an externally generated tone using a ramped sine wave generator. The popping sounds are caused by cavitation in the synovial fluid between my C1 and C2 vertebrae. When I roll my head bubbles are created which quickly burst creating the popping sounds.
Some years ago now I used to have an occasional fizzing sound creep up my neck in the same area. The fizzing sound was loud and it rose from C2 to C1. These bubbles must therfore have been in a much less viscous fluid than the synovial fluid. I would guess that they may have occurred in my csf. The fizzing effect would occur whilst my head was perfectly still so these bubbles were not created through cavitation.
I am finding that resting my neck on my vulken acusphere helpful but my neck is now very uncomfortable. I also have very heavy arms which ache. I take ibuprofen to alleviate the muscle aches.
I have my fingers crossed that these muscle symptoms and the dizziness will get better over the next few weeks rather than worse.