This post is from R, whom I came into contact with at least a decade ago. She had significant SSRI dependence and withdrawal issues. And was very discombobulated by the difficulties she was having.
Back in 1997 after a difficult and stressful house move I went to see my Family Doctor because I was getting a lot of headaches and panic attacks in crowded places. She said I was suffering from a chemical imbalance in my brain and prescribed me Seroxat/Paxil. She said I would need to take it for life as I needed serotonin like a diabetic needs insulin.
I took it for 8 years and it helped with the panic attacks at first, but over time I didn’t like the effect it was having on me. I suffered from an emotional blunting and after being a caring, quite a timid person, I was suddenly becoming very bolshie.
I had sexual side effects, although I didn’t realise it at the time.
I put on a lot of weight after being very slim all my life and basically I wasn’t happy with how I felt. I told my doctor I wanted to stop. I was on 20 mg and she said to halve the dose each month. I went from 20 mg to 10 mg to 5 mg over 3 months and then stopped. I was ok for a few months and then all hell broke loose,
I endured the most awful anxiety, panic and terror all rolled into one. I could not be still I couldn’t eat or sleep I was in a very bad state. I now know that it was AKATHISIA.
My symptoms included:
- Head shocks
- Dizziness
- Static objects looked like they were moving
- Headaches
- Bowel problems
- Burning feet
- Burning back
- Tinnitus
- Vision problems
This lasted for around 10 years. My doctor didn’t know how to help. I found other people with the same predicament on a forum called Paxil Progress. At least I knew I wasn’t going mad and this was withdrawal. I also found out that if I had gone back on the drug and started a very slow taper I would have been spared the horror but the window of opportunity had passed so I had no option but to ride it out. For ten years I suffered. The worst was Akathisia followed by the dizziness.
I saw a neurologist in 2009 who confirmed my symptoms were withdrawal. He said they would go away.
In 2010 I saw a balance specialist who said SSRIs would not cause dizziness on stopping – it is one of the first withdrawal effects listed.
My Family Doctor had never heard of Akathisia.
In 2015 the Akathisia finally left me and I thought that was the last I had seen of it but to my horror it returned in 2017 after I had taken some antibiotics for a throat infection. That was the last time I took any medication. I was then and still am far too scared to take any medication in case the Akathisia returns.
Trying to find a reason for my Dizziness I went to numerous doctors who all had different diagnosis.
In 2019 I saw a specialist who diagnosed a unilateral vestibular loss of 60% in my right ear. He said I had Ménière’s disease and prescribed beta histine. I was reluctant to try it but needed some help so by taking 4 mg 3 times a day I gradually built it up to the required 16 mg 3 times a day. This didn’t help.
In the end, in May this year I saw a doctor who was supposed to be the best in the country for balance problems. After a barrage of vestibular tests I was diagnosed with PPPD.
Persistent Postural Perceptual Dizziness
The brain’s balance system combines information from many sources, including:
- the vestibular system (the semicircular canals and otoliths in the inner ear), which senses when your head tilts, turns or changes speed
- the visual system, which lets you see
- the proprioceptive system, which sends signals about position, pressure, movement and vibration from the legs and feet and the rest of the body
Normally, you don’t consciously notice all these different sources of information. In the background, your balance system combines them for you and you can stand, walk, or turn your head without needing to think about keeping your balance. But with PPPD, the experience is no longer seamless. You start to notice the different signals, especially if they do not all agree with each other. This can make you feel like you are moving when you are standing still, or like you are about to fall.
If the brain thinks you might be in danger of falling, it reacts automatically to protect you. Think about how you feel when you are walking on ice or standing on a ladder: your body gets stiff, you take shorter strides, and you focus on staying upright. This means the balance system uses less information from the vestibular system and more from the visual system. Normally, when the risk of falling is over, the balance system goes back to normal. But in PPPD, the brain stays in “high-risk” mode instead.
This causes a vicious circle:
- you worry about falling and pay more attention to keeping your balance
- the brain stays on the alert and relies more on visual input
- visual input like busy patterns and movement suggests you might be in danger of falling
This description may make it sound as if PPPD is “all in your head,” but the symptoms are real. PPPD has some things in common with anxiety disorders, but it is not a psychiatric disorder. Some studies have found differences in brain activity in people with PPPD, compared with people who do not have PPPD. These differences may make it harder for the brain to integrate different sources of information and assess threats properly.
This condition is difficult to live with, to feel like you are constantly rocking and wobbling is very tiring, it affects all aspects of your life, it also affects your mood as you have so many restrictions. There is an irony here when the medication used to help the condition is the very same thing that kicked it all off for me.
Here is where it gets interesting for me. Although this condition is difficult I have managed to live, work part time, look after my family and go on holiday except for two occasions and they both involve the return of Akathisia.
In 2020 at the start of the pandemic I developed a rash all over my body the doctor couldn’t say if it was COVID or not as the testing wasn’t available but along with the rash my Akathisia came back, my balance problem went into overdrive and I found it very difficult to walk.
I also experienced the internal turmoil as I had before not a pleasant combination. It lasted for months but when the Akathisia went away so did the severe balance issues and I was back to my normal rocking and wobbles.
The same thing happened in April of this year I developed a virus and was ill for around 10 days. Akathisia reared its head again and the same thing happened with my balance again. I was struggling to function normally and now 3 months later I am still suffering severe dizziness, and I think Akathisia is in some way contributing to this.
My balance specialist told me that SSRIs are the only treatment for this.
I contacted Dr Healy to ask him what he thought of me trying an SSRI. I mentioned that my Akathisia had returned. He pointed me to a post on RxISK, which talked about P5P and akathisia. I was feeling pretty desperate so I reluctantly gave it a try, albeit at a very low dose to start with – 5 mg. This was not enough so I tried going up and at 15 mg the symptoms started to disappear. The akathisia came back again slightly after a few weeks in 15 mg so I went up to 20 mg and it has gone away.
I hope to stay on this for a while and see what happens. My balance is still not right and I hope this will get sorted as well.
DH Comment on PPPD and its Treatment
PPPD is a newly described condition. It has continuities with acute SSRI withdrawal. Several of the features look like classic withdrawal lasting longer than usual.
The PPPD links on the Web talk about an overlap with anxiety and that treatment involves SSRIs or SNRIs or CBT – with drugs curing it and CBT helping. For the kind of condition R has had, this is plain baloney.
The effects of SSRI and related drugs here are much he same as their effects on the pain of peripheral neuropathy – they can relieve pain but it is often the pain they have caused in the first instance that they relieve. They relieve it by further damaging nerves that have caused the pain but this is storing up more pain in the longer run.
See Greg’s Dilemma and Feeling Blue.
There may be several varieties of PPPD. The emphasis in the links on the Web are on the visual system and the middle ear vestibular system – and SSRIs likely affect both. See SSRIs and Vision, Keeping an Eye on the Ball.
But with SSRI dependence and withdrawal it may be the proprioceptive system that is most affected with the small fibre nerve endings fried by SSRI treatment.
This will not be fixed with more SSRIs or CBT and it seems like torture to tell someone like R that she needs an SSRI or her problems are mainly in her mind and CBT will help – its her fault for letting things get out of control.
Its like trying to use CBT to manage riding a backward’s bike. See Riding a Bike Backwards and Riding a Backwards Bike.
R asked me are there any other options. Initially I couldn’t think of one but then another of RxISK’s regular contributors reminded me about bethanecol. See Dysautonomia improving with Bethanecol.
Bethanecol has featured in Psychiatric Drugs Explained as being beneficial for sexual problems for over a quarter of a century. It is now clear it acts on Muscarinic-3 (M3) receptors, which is where the nerve regeneration action is these days. In the interesting dysautonomia case presented above the timescale of improvement maps very well on to an action to help small nerve fibres regenerate.
After the last post on PSSD Breakthrough several people got in touch asking where they could get benztropine. Bethanecol might be easier to get and just as good or better.
If you can get it and if it suits you in a low dose and you can give it several months to see what happens – nothing will happen fast if its repairing fried nerve endings – it would be great to hear from you.
annie says
May 1, 2001
Raphael J. Leo, MD
Movement Disturbances Associated With SSRIs
https://www.psychiatrictimes.com/view/movement-disturbances-associated-ssris
The SSRIs have become the most widely prescribed antidepressants in the United States. With this increased use has come more information on adverse events associated with their use, such as sexual dysfunction. However, movement disturbances associated with SSRI use can adversely impact treatment. This article explains the pathology of movement disorders and describes confounding variables such as other medications, pre-existing neurological insults and the nature of case reviews. Those at risk include the elderly, patients taking neuroleptics and those exposed to high levels of SSRIs.
The selective serotonin reuptake inhibitors are employed to treat an array of disorders, including depression, social phobia, panic disorder, posttraumatic stress disorder and obsessive-compulsive disorder. With generally fewer side effects and better tolerability than tricyclic antidepressants and monoamine oxidase inhibitors, the SSRIs have become the most widely prescribed antidepressants in the United States.
Owing to this popularity, adverse drug events previously unappreciated in premarketing clinical trials have gained increasing attention. The most notable of these has been the effect on sexual functioning. Less well-known, yet clinically significant, are movement disturbances that can occur with SSRI use. This should be of concern to clinicians, as movement disorders are uncomfortable, can adversely impact compliance, and can undermine the alliance between clinician and patient.
In a review of the literature, 71 cases of SSRI-associated extrapyramidal symptoms (EPS) were found (Leo, 1996) (Table). Akathisia was most common, followed by dystonia, parkinsonism and tardive dyskinesia-like states. In addition, 16 cases of worsening parkinsonism were found in patients with pre-existing Parkinson’s disease.
Any review of case reports is subject to inherent limitations. First, some case reports are limited by ambiguous descriptions that make movement disorders difficult to distinguish from other psychiatric disorders or other potential SSRI side effects. This is most notable in case reports of akathisia attributed to SSRI use. At times, it becomes difficult to differentiate akathisia from anxiety or jitteriness (Amsterdam et al., 1994; Maany and Dhopesh, 1990). Mistaking comorbid anxiety for SSRI-associated akathisia may delay or interfere with the appropriate treatment of the patient’s anxiety disorder.
Second, in only limited numbers of case reports was the SSRI the sole agent administered. Often, the coadministered medications were also capable of producing EPS. Since the movement disturbances did not appear to occur until after addition of the SSRI, it is possible that pharmacokinetic interactions may have occurred — leading to increased bioavailability of the SSRI, the concurrently administered drug or both — thus leading to the emergence of the dyskinesia (Leo, 1996). For example, when coadministered with paroxetine (Paxil), serum perphenazine (Trilafon) levels were significantly increased and accompanied by increased rates of akathisia and parkinsonism (Ozdemir et al., 1997). In addition, medications that normally do not produce EPS may, when combined with an SSRI, predispose patients to dyskinesia (Leo et al., 1995).
Third, in several reports, the presence of pre-existing neurologic disease was evident. Conditions such as head trauma (Coulter and Pillans, 1995) or Parkinson’s disease (Jimenez-Jimenez et al., 1994; Steur, 1993) can account for the development or emergence of movement disorders. It is also unclear how many of the patients reported in the literature had undiagnosed or overlooked neurologic conditions coincidentally manifesting around the time of SSRI exposure.
Fourth, reports of SSRI rechallenges are rare (Coulter and Pillans, 1995; Reccoppa et al., 1990). Despite the presence of confounding variables, re-exposure to the SSRI would establish a stronger causal relationship between SSRI treatment and the emergence of movement disorders. These factors limit the ability to draw firm conclusions about a causal relationship between SSRI use and the emergence and/or exacerbation of movement disorders.
Pathophysiology
A simple schematic model of movement disorders is provided in the Figure. Normally, voluntary movements arise when corticospinal tracts generate impulses to anterior horn cells in the spinal cord, modulated by basal ganglia output. Gamma-aminobutyric acid (GABA) from the basal ganglia is inhibitory, refining the corticospinal tract activation. Deficiency of GABA outflow, e.g., Huntington’s disease, is characterized by herky-jerky and extraneous movements.
The GABA outflow from the basal ganglia is, in turn, controlled by the balance between two neurotransmitter systems, i.e., dopamine (DA) arising from the substantia nigra and acetylcholine (ACh). The latter have opposing influences on the activity and, therefore, the outflow from the basal ganglia. Disturbance in the balance between ACh and DA alters the net outflow from the basal ganglia, producing movement disturbances (Figure). Thus, idiopathic parkinsonism arises from cell loss in the substantia nigra, reducing the amount of inhibitory DA input to the basal ganglia. The ACh, now relatively less opposed, stimulates the basal ganglia, increasing the inhibitory output to the corticospinal tracts, producing the bradykinesia, rigidity, mask-like facies, shuffling gait and other symptoms characteristic of Parkinson’s disease.
The (Figure) also depicts, therefore, the effect of conventional high-potency antipsychotics in producing dyskinesia. These agents, such as haloperidol (Haldol), bind DA receptors in the basal ganglia, thereby preventing access to DA arising from the substantia nigra. The net effect, like that in Parkinson’s disease, is unopposed excitatory input from ACh-containing neurons. Consequently, treatment consists of the addition of an anticholinergic agent like benztropine (Cogentin) restoring balance between DA and ACh and re-establishing the normal inhibitory outflow from the basal ganglia.
Serotonin (5-HT)-containing raphe nuclei extend diffuse interconnections to the DA-rich substantia nigra (Dray, 1981). Neurophysiologic and electric stimulation studies demonstrated that the 5-HT released by the raphe nuclei inhibit striatal neurons, an effect which is reversed by 5-HT antagonists (Davies and Tongroach, 1978). Thus, it is plausible that inhibitors of neuronal 5-HT reuptake, by increasing the availability of 5-HT, might be expected to produce an effect similar to that of DA-blocking agents (Figure). In fact, high doses of fluoxetine (Prozac) have been shown to inhibit DA synthesis in the forebrain, hippocampus and portions of the basal ganglia, specifically the caudate-putamen (Baldessarini and Marsh, 1990). Hence, it can be expected that movement disturbances might arise from SSRI use.
The physiologic processes underlying the development of akathisia may involve the interaction of serotonergic and DA pathways innervating mesolimbic systems. While not depicted here, it is suggested that the inhibitory input to these DA pathways produces the overt and covert restlessness characteristic of akathisia. Noradrenergic mechanisms may also be involved.
The mechanisms underlying SSRI-induced movement disorders are likely to be more complex than has been suggested above. A few case reports suggest improvement of parkinsonism and dystonia with the addition of SSRIs (Durif et al., 1995; Keppel Hesselink, 1993; Meerwaldt, 1986). It is possible that other interconnections between 5-HT containing innervations with those of GABA and ACh may contribute to the development of movement disturbances (Fibiger and Lloyd, 1984; Schreiber and Pick, 1995). However, these interconnections have yet to be clarified.
Just how SSRIs induce EPS and other movement disorders in some patients, but potentially improve parkinsonism and dystonia in others, remains unclear. Furthermore, were the mechanisms underlying SSRI-induced movement disorders as simple as illustrated here, the expectation would be that SSRI-induced movement disorders would be common. In fact, the rates of such movement disturbances remain quite low.
Who Is at Risk?
It is possible that some patients are more vulnerable to SSRI-induced movement disorders than are others. Included in the higher-risk category are a) the elderly; b) those exposed to high levels of SSRIs (due to high doses or altered metabolism due to drug interactions); c) patients with concurrent neuroleptic exposure; and d) patients with compromised nigro-striatal functioning. Elder patients may be susceptible to neuronal loss, rendering them vulnerable to the effects of enhanced 5-HT input to nigro-striatal pathways. In addition, due to decreased hepatic functioning, they may be vulnerable by virtue of increased levels of exposure to administered SSRIs. Clearly, neuroleptic exposure increases one’s risk of movement disorders, and such exposure may increase the vulnerability of patients who are simultaneously administered SSRIs.
One can only speculate on the influence of gender. While reports featuring female patients who developed dyskinesia associated with SSRI use outnumber those featuring males (Table), one cannot assume that females are more vulnerable. On the one hand, the gender differences observed may merely reflect another trend, i.e., the prevalence of depression is greater among females and more females than males seek treatment for depression (Weissman and Klerman, 1977). In fact, it may be possible that males may be more susceptible than females to dyskinesia associated with SSRI use. Among SSRI-treated patients in a New Zealand medication monitoring program, females (n=3,539) exceeded males (n=1,917) (Coulter and Pillans, 1995). Nevertheless, the proportion of males developing movement disorders (n=8, 0.42%) exceeded the proportion of females (n=7, 0.2%) who did so.
While a majority of cases of SSRI-induced movement disorders involved fluoxetine, at the time of my initial review, fluoxetine had exceeded the other SSRIs in sales and had been available longer than the others. Consequently, the numbers of reports involving fluoxetine may simply have been an artifact of these trends.
On the other hand, there are differences among the effects of SSRIs on DA-reuptake inhibition. For example, sertraline (Zoloft) exhibits a direct augmenting effect on DA-reuptake inhibition (Koe et al., 1983); inhibitory serotonergic input to dopaminergic systems would be mitigated by such direct augmentation. Paroxetine and fluoxetine have lower potencies than sertraline for DA-reuptake inhibition in vitro (Richelson, 1994). Paroxetine also has anticholinergic properties in vitro, which may contribute to reducing the likelihood of EPS as compared to some of the other SSRIs.
Treatment Options, Conclusion
The most prudent treatment measures might be dose reduction or discontinuation of the SSRI, switching to an alternate antidepressant, and/or reducing the coadministered medications that may have led to drug interactions and potentiation of the movement disturbances after SSRI administration. Other interventions employed to mitigate dyskinesia associated with SSRI use are summarized in the Table.
Given that patient exposure to the aforementioned SSRIs is currently estimated to exceed 85 million, movement disorders associated with SSRI use are rare. Certain patients may be more vulnerable to the emergence of dyskinesia after SSRI treatment, e.g., the elderly or those with neurological insults. Clinicians may need to pay particular attention to patients treated with SSRIs who require multiple medications for co-existing medical conditions or complicating psychiatric symptoms. Because pharmacokinetic interactions may occur that render patients susceptible to dyskinesia, patients should be examined frequently for signs of an emerging movement disorder.
References:
1.
Amsterdam JD, Hornig-Rohan M, Maislin G (1994), Efficacy of alprazolam in reducing fluoxetine-induced jitteriness in patients with major depression. J Clin Psychiatry 55(9):394-400.
2.
Baldessarini RJ, Marsh E (1990), Fluoxetine and side effects. Arch Gen Psychiatry 47(2):191-192 [letter].
3.
Coulter DM, Pillans PI (1995), Fluoxetine and extrapyramidal side effects. Am J Psychiatry 152(1):122-125 [see comment].
Etc.
chris says
So this is very interesting indeed, they can throw in anxiety, panic attacks, ADHD’ alcoholism and tardive akathisia as well
https://www.cam.ac.uk/research/news/chemical-imbalance-in-the-forebrain-underpins-compulsive-behaviour-and-ocd-study-finds
https://www.nature.com/articles/s41467-023-38695-z
“Standard MRS scanners can be quite crude, not picking up the glutamate signal very accurately. The 7-Tesla machine allows us to separate the overlapping signals and measure glutamate and GABA more precisely,” said Biria.
Well well well – major interesting!
“The researchers say that raised glutamate levels may prove to be a “biomarker” for OCD. This could guide new therapies, including medication but also non-invasive use of magnetic stimulation through the scalp, an approach which is showing some promise for treatment of OCD.”
“Our findings are a major piece of the puzzle for understanding the mechanisms behind OCD. The results suggest new strategies for medication in OCD based on available drugs that regulate glutamate. In particular, drugs that inhibit presynaptic glutamate receptors,” said Robbins. A presynaptic receptor is the part of a nerve cell that controls release of neurotransmitter chemicals.”
If the 7-Tesla machine is accurate then maybe. The rest of it I disagree with –
“The results suggest new strategies for medication in OCD based on available drugs that regulate glutamate. In particular, drugs that inhibit presynaptic glutamate receptors,”
The body will act against any drug intervention. The only long term solution is to help the body to convert glutamate to gamma-Aminobutyric Acid just give it what it requires Pryidoxal-5-Phosphate, and cut out high glutamate foods.
I will try to link this to Dr Biria – many more tests for the 7 – Tesla machine.
Kristina Kaiser says
This article and https://rxisk.org/pyridoxal-5-phosphate-and-akathisia/ really made me think about the relationships between hearing, vision, and balance. Many of the symptoms noted in this article are ones my teenage daughter, Natalie, and countless others who’ve suffered SSRIs adverse effects have exhibited and/or reported. As I’ve previously written, Natalie’s symptoms included tinnitus, dizziness, lack of coordination, and change of gait (shuffling her feet and walking with a wide stance days before her akathisia-induced death).
The lazy eye she developed after wrongly being prescribed Prozac at age 10 is something I always suspected was also an SSRI adverse effect, given that Natalie was born with two beautiful, “normal” eyes and developed one “lazy eye” after Prozac. Unsurprisingly, the two eye doctors I took her to see for consultation never asked if Natalie was taking any medication. But even if they had, I’m fairly certain they would have made no possible connection.
Dr. David Healy says
Kristina
Thanks for this. Natalie’s story features in 2 posts
Kidnapped: Natalie’s story 1 https://rxisk.org/kidnapped-natalies-story/
Kidnapped: Natalie’s story 2 https://rxisk.org/kidnapped-natalies-story-2/
This is almost certainly happening much more often than we think
The imbalance has to be just as bad as akathisia – the idea that it is all in the mind and you should pull yourself together is horrifying
David
chris says
https://www.listennotes.com/podcasts/the-benzodiazepine/dr-kendra-campbell-getting-jJZdDcbtlvC/
38.20 – “We know that thousands of people commit suicide every year because of akathisia”
“I have seen hundreds probably thousands of times someone get started on a psychiatric medication let’s say and anti-psychotic or something and they have akathisia and the akathisia is not recognised by the person who prescribed that medication or by other prescribers and it is assumed to be a new mental illness right – oh my god they’re so agitated, now they have bi-polar disorder or this and that. Literally they get a new label and they get another medication added. I have seen this in the emergency room, I have seen it so many times”
tim says
Thank you Kristina, and thanks to R and DH for this important insight into yet another life changing, severe adverse reaction (ADR) to SSRI/SSNIs and ADs.
Within two or three days of our daughter’s first abduction and wrongful detention for misdiagnosed akathisia, her enforced fluoxetine resulted in nystagmus. (A repetitive -windscreen-wiper like) abnormal eye movement. When acute in onset, this is usually an indication to consider the differential diagnosis of organic brain disease. I asked for brain imaging to address the possibility of tumour but was treated with contempt.
This was to be the first of a cascade of iatrogenic injuries. It is still present 12 years later and some 10 years off all of the avalanche of psychotropic drug introductions and withdrawals.
Our daughter was an accomplished and confident skier.
We have been aware that her balance has been impaired for many years. Even with winter boots, it is difficult for her to walk in light snow or frost. Might her gait and postural changes on slippery surfaces with intense visual concentration be compatible with features of PPPD?
When her akathisia ‘failed to respond’ to fluoxetine she was considered to be guilty of “attention seeking behaviour”!
Ignorance, arrogance and incompetence in combination with poly-drugging were followed by obvious movement disorder/s.
After a total of three wrongful detentions, each accompanied by increasingly toxic cocktails of unnecessary psychotropic drugs, and then out-patient drugging, she could no longer walk. Her parents painstakingly taught her how to walk again over many months.
There was no professional physiotherapy or meaningful rehabilitation. Psychiatry appears to distance itself from, and deny its disasters, and it has been perceived to be impossible to achieve appropriate primary care support.
Without this, there are no state benefits. In any other field of medicine, significant compensation for a life destroyed would be a fair and realistic expectation. Not in psychiatric iatrogenic injury.
Even when not ‘detained’ there was no attempt by prescribers to achieve fair, full and informed consent: “If I were you I would take them”. Consent appeared to be treated with contempt. ADRs were never discussed.
Always happy, joyful and a delight to be with, she was never depressed.
To misdiagnose akathisia as ‘Psychotic Depression’, then to ‘diagnose’ every subsequent ADR to enforced psychotropic
drugs as Serious Mental Illnesses, (in an incarceration where cruel, abuse and ridicule were apparently the routine modus operandi) is surely indicative of inadequate professional training?
Our daughter “Never Had Any Mental Illness” we were later advised (Expert Opinion).
Music had been a great love, but for the first 8 years after her wrongful detentions and multiple iatrogenic injuries she was unable to listen to music at all.
Now having learned about the brain, neurological and multiple systemic injuries caused by psychotropic drugs, I wondered if there was vestibular and/or auditory nerve damage.
At last, music is once again part of everyday life after so many years.
The apparently altered balance remains.
Will PPPD be denied? Will those who have PPPD be rejected and become ‘heart sink patients’?
Perhaps another enlightening Panorama documentary might help?
Kristina Kaiser says
I really appreciate your sharing these experiences, Tim. While they are difficult to read and bring back memories of my daughter’s terrifying prescribed demise, it also helps me, and likely many other witnesses of iatrogenic harm, to better realize our experiences are not rare. Such realization can therapeutically diminish the misplaced, yet still real, burden of guilt I and many others are left to grapple with.
When I was going through Natalie’s belongings after her death, I found her diary and school writings dating back to age 5. In one entry written after Prozac, she said it felt bad being picked last for school gym teams and being too uncoordinated to catch a ball. Reading that in 2013 puzzled me because Natalie had been a terrific rock wall climber prior to SSRIs, a talent that surely requires good coordination, balance, and vision. Reading about the skills and related joys your daughter was robbed of (music, skiing, and likely many other interests) leads me to believe there are thousands, likely millions, of people who are unaware that their lives were and/or are greatly diminished and altered by SSRIs’ adverse effects.
tim says
So pleased to hear from you Kristina.
We have read, re-read and anguished over Natalie’s tragedy in the RxISK ‘Kidnapped’ series.
If we hadn’t fought to get our daughter out of the dangerous and deadly hands of unneeded, ‘drug-dependent psychiatry’ with its shameful diagnostic incompetence, cavalier and uncaring prescribing rituals, we believe that without doubt our daughter would have been killed.
It would not have been possible to save her without the expertise, compassion and dedication of a psychiatrist of conscience, a real expert.
It was expected of me as a doctor ‘To trust and respect the skills and experience of professional colleagues’.
My naivety in trusting that they could help when akathisia overwhelmed her, and caused her to writhe in agony leaves me overwhelmed with guilt.
I feel betrayed that I had studied and practised medicine for so many years, yet the word AKATHISIA had been kept secret from me.
It is indeed with great sorrow that we look at photos of her times of joy in the mountains, and recall the grace, skill and her modest style of skiing.
I can visualise Natalie’s rock wall climbing accomplishments so clearly.
How can my profession continue to tolerate the appalling outcomes of main-stream psychiatry?
Surely there must come a tipping point when this incomprehensible global tragedy is called to account.
We need an end to the grief, sorrow and despair which is so often the current outcome of their ‘patient management.
Kistina, you and Natalie will always be in our thoughts.
chris says
Just in case people do not know, this is the man who is mostly responsible for bringing Prozac to market. I came across him from reading Peter Gøtzsche and found these very informative videos. He conducted a small trial in a large hospital in Stockholm and within the first week two patients tried to commit suicide. As Susanne enquired I’ve also been wondering who his boss was at the time – he says he was the Vice president of Eli Lilly in London.
https://youtu.be/9Eet4x5_8tE?t=419
I had to re-learn how to write, paint, take photos, drive and the lack of coordination was terrible, still I struggle to type. Have tinnitus as well.
tim says
Suffix to above comment 19th July 2023:
Needless to say, my daughter has never skied since her misdiagnosed akathisia and will never be able to ski again.
annie says
Big, big problems arise after severe drug damage.
Guilt being one that is almost impossible to shake off, because of their unshakable beliefs.
I have always held the view that those doctors accountable, who just walked away, without a care, who escaped, blameless, can load a horrifying situation in to an untenable situation.
How staggering is it, that doctors can write notes describing, in the cold light of day, clear descriptions which could come out of a House of Horror movie, at the same time as detailing patient put on ‘Paroxetine’, patient off ‘Paroxetine’, patient not feeling well, patient has dose doubled, patient off/on ‘Paroxetine’, in several pages, and the, chlordiazepoxide prescribed for agitation, patient prescribed Diazepam, patient prescribed Lorazepam, patient given hundreds of beta-blockers, and then to put the boot in, write excoriating referrals to the local psychiatrist not telling him about the mountains of drugs she has prescribed off her own bat and him not knowing she has taken me off Seroxat cold turkey and then to finish off their exemplary care, no one acknowledged the year-long withdrawal with ‘Paroxetine liquid’ which came from someone else, and was not mentioned in the medical records by them.
I have my medical records from the age of 13, and it is quite a pile, with a few serious operations, fallopian tube removal, parotid gland removal, serious and brilliantly undertaken by sophisticated surgeons. Yet my doctor harped back in her referral, back donkeys years, that an ectopic pregnancy led to distress. This was a case of a desperate doctor trying to formulate in her own mind, why I was as I was.
My current boyfriend, at the time, sat in my private nursing home, with my parents, oooh it was so embarrassing. But guess what, down the line, I got miraculously pregnant, with my partner, at the time, so dear doctor, we can quash that little story
The obligatory ‘notes’ of a country doctor, hell fire.
These doctors and their ‘notes’ held the key; it would take a limited amount of time for a third party to detect the ruse.
It is truly staggering.
I had to relearn how to walk, how to talk, how to do anything at all –
Great to see this investigated.
Dr. David Healy says
R has asked a neural circuit dizziness group if SSRIs have helped any of them and so far one person replied saying no and the side effects were a problem and a second said no but that it did make her less anxious
DH
Dr. David Healy says
R has had one more reply – a lady who has gained 3 stone on sertraline. Sertraline helps with anxiety but not with dizziness. This is the kind of scenario you might expect if there is more than one cause of PPPD. Where caused by an SSRI it is not clear how likely an SSRI is to helped. Whatever the cause, the best an SSRI is likely to do is to reduce anxiety – it will not cure the underlying condition
David Healy
ANON says
This documentary is all part of the discourse.
It is great to acknowledge that there are remarkable human beings speaking up about the safety and efficacy regarding the covid vaccines and the distressing protocols which were implemented.
There certainly needs to be a Royal Commission into how the Covid Pandemic was handled. There are lessons to be learnt from this pandemic.
https://zeeemedia.com/interview/world-premiere-conference-of-conscience-australian-doctors-finally-speak-out-part-1/
We have to honestly ask ourselves, why did we allow to get it out of hand?
There is a remedy to the situation however, are we prepared to listen and do the right thing?
Having a conscience is paramount during these challenging times.
Displaying the courage to speak up takes a lot of guts!
” Moral courage is higher and a rarer virtue than physical courage.”~ William Slim
chris says
Psychiatry as practiced in the NHS and rest of the world believes abuse is the correct treatment. And it is all around abuse from the very architecture, the people it employs and of course the drugs. It treats with contempt those who challenge this in it’s closed cultures of abuse.
Neuroleptics are a form of initiation and filtration system for employing people who can do this to other people. Normal newbie doctors who have to prescribe neuroleptics very quickly realise if they continue they will seriously harm and maybe kill their patients, so they leave or get booted out, they don’t challenge, they need a future, a reference, years spent training and an enormous cost only to realise a terrible truth. I’ve seen some utterly shocked.
annie says
Rxisk/New Look
Light grey type can be a hard-read for those of us struggling with eye-issues
It is not immediately obvious that new comments have come in
It is not immediately obvious that there are comments
It is not immediately obvious that there are hundreds of Rxisk blogs with the reduced number of blogs now on show
A further step is needed to to access previous blog posts by pressing Blog, then Next Page
I find it useful to see previous blogs in front of me
I see the logic in the changes, Rxisk will always be the ‘Game-Changer’, could you just darken the type a tad?
Cleaner and Leaner and Slicker, it indisputably is…
Dr. David Healy says
Please keep all comments coming – there will be a lot of changes over the next few weeks and it would be good to get things right
D
ANON says
All the short term and long-term side effects have been downplayed by many in the medical establishment. They have conveniently blamed the side effects and adverse reactions on covid. This was all conveniently orchestrated by those stakeholders who knew what they were doing. Post-covid, I have witnessed many with so many medical issues, (including unforeseen deaths), that they are unable to attribute to the Covid-19 vaccines. This is happening with many other medicines, also. For all those courageous people who spoke the truth, you are a shining crown of glory. You stood up for the principles of others and remained true to your convictions, regardless of the consequences, right till the very end. I take my hat off to all of you.
The freedom to choose what we put in our bodies is something that many take seriously.
Without understanding all the negative clinical data trials and not being informed about the short/long term side effects, it is like playing Russian-Roulette with one’s good health.
The serious side effects and adverse reactions have been downplayed and the legal system, media, many prominent organizations and relevant health bodies have failed many by censoring critical thinkers to keep silent.
Many have lost their trust and faith in science, medicine and the whole entire systems and processes.
It has become too politicized and corrupt.
Irrespective of what many experts in their field have concluded:
am very concerned about the current legislations pertaining to safety and efficacy issues relating to medicines and vaccines, especially in regard to the reporting system and the publishing of scientific papers. Are they backed up with truthful data and honest facts?
Implications of inadequate patient information and medicine transparency is something that needs to be seriously addressed and if the necessary changes are made to our Laws, we can be better informed and make better choices. Therefore, one cannot give informed consent with a lack of information.
If many Health Officials of the universe were completely convinced that the Covid-19 vaccines were safe and effective, why did many countries have the compensation scheme put in place? ” WHERE THERE’S SMOKE, THERE’S FIRE”?
History and experience, remind many that we are not all sheeple to the system.
ANON says
chris says
July 21, 2023 at 6:03 am
In response to your comment Chris, dated: July 21, 2023 at 6:03 am. Sadly, the ‘scandalous carry on’, is disgusting to say the least. The gaslighting, the lies, the rumors and the way professionals get paid for this kind of ‘carry on” never ceases to amaze me.
Unfortunately, we see this abuse occurring in families also, where the golden children are rewarded for their greedy, dishonest, immoral, abusive self-entitled behavior.
The tables will eventually turn.
The system is in a desperate need of an overhaul! ~Where those who have the courage and guts to speak up, get rewarded.
ANON says
For those who murder patients, in living day light, with their medication(s), tests/procedures, there are no words to describe these ‘so called’ professionals. Under the guise of their white coats and degrees, many can practice ‘barbaric’ medicine without any ‘moral’ conscience. For the powers that be, if you speak up about the uncivil practices implemented in some hospitals, you are on your own. If there are many, you may have ‘some luck’ in succeeding however, the journey is thwart with a challenging battle. For those who believe that they have no one watching over the harm they do, trust me, I acknowledge and appreciate that there are powerful forces that are unbeknown to many of you. Upholding the sanctity, dignity and respect of any patient should always be paramount in all the fields of medicine. What I have witnessed, should not go unpunished. The dysfunctional and morally unscrupulous behavior of those who allow this kind of ‘disgraceful carry on’ should not be tolerated or accepted. The organizations who are meant to be there for the best interest of the people should be totally eradicated and reformed with people of ethical principles.
chris says
It looks good to my eyes. I guess if the text could be made as black as possible against the light grey it would be helpful or the light grey on the outside and the box with the comments white to highten the contrast for the text.
mary H says
The New Look. I like the uncluttered feel of the blog site under its ‘new look’. Th print, as you type a comment, is small and too light ( as has already been mentioned). I think it will take time to get used to writing the comment and then filling name etc. – but that is a minor problem. The biggest problem of all, I find, is in looking for old posts. I think it should either be possible to click on the “More To See” box or have a piece, underneath the 2 posts now showing, directing us to older posts.
Over all – a good, clean well-spaced out layout with just a few minor problems which I’m sure will be ironed out in time.
annie says
Keeping an Eye on the Ball: Visual Problems on SSRIs
December 3, 2013 269 Comments
https://rxisk.org/keeping-an-eye-on-the-ball-visual-problems-on-ssris/
When I was told I had Macular Degeneration a while ago, it was very scary. The optician spoke in hushed tones and said it can lead to blindness. I had opted for the extra £20 for the camera to look behind the eye and the picture on the computer was not rosy. There is a middle line of site that develops proteins stuck to it, in simple terms, this means that straight lines can appear wavy.
I also had a serious case of dry eye, which in back-to-front language, means that the eyes are drenched in liquid and when it is cold, such as winter, this is monumentally uncomfortable.
Then the cataract situation became an issue.
I opted to go private and looked up my eye surgeon. One of the best, in Scotland and worldwide.
Did I ever meet some interesting people as we went through the conveyer belt of tests and whatnot, spending our ten thousand quid for the most important moment of our lives, and sum. Dead ordinary folk trusting this little skinny Asian guy who dashed around, as if his life depended on it, the little hand on the shoulder, the little words of encouragement, this guy was awesome. Having this man poking around in your eyes whilst conscious, cutting out your lense with computerised precision has to be on an epic scale, the coloured lights and fractured sights, something to behold.
This was meteorite-shower stuff. Blown-away…
I elected for new lenses which gave me long distance and middle distance, but need glasses for reading. The weakest magnification available 1.50, in a chemist, around a tenner. I have graduated to buy the same, but with a coating that blocks out blue light from the computer. Eco friendly too, rubbery and comfy. After over fifty years of contact lenses.
We all see things differently, and I can trick-read a book by reading quite fast to beat the time-lap of the macular deciding to distort all the words and lines. The horizon isn’t wavy yet, the light-print is distinctly unsettling.
Checking-in last night, the light went dark as if a new world had opened.
Speedy Gonzalez, thanks very much…
Oh, my comment is still grey…
ANON says
When people manipulate, distort the truth, control and harm people by abusing their power, they are demonstrating how inconsiderate and uncharitable they are. Care is when you are considerate, sensitive, protective and considerate to other people’s feelings and needs. If that care is not reciprocated, it is pointless being tormented by toxic and harmful behavior. The damage people induce to vulnerable people can never be undone. Run, when people do not have your best interests in mind. Some people believe they can abuse their power because they believe they can get whatever they want. Intimidation, humiliation and abusive/greedy behavior is not what I consider care. Whoever you are, please do not manipulate the definition of care to get what you believe you are entitled to.
ANON says
New set up looks great, David.
So sorry to acknowledge the terrible issues some people have had to endure.
It gets right to the point where it hurts, a lot.
I believe some just like to create drama just for the sake of it!
It seems like life can be taken away from you in the blink of an eye lid if you are in the wrong place at the wrong time, where people believe they can abuse their powers.
It is very disturbing how our rights are being eroded by bureaucratic futile powers.
Anyway, I hope we get some good news about changes within the medical infrastructure.
Long overdue!
Does it really have to get bad before it gets good?
If only it was as easy as changing the outlook of the website.
The universe would indeed, truly be a better place.
Thank you David for giving us a megaphone to speak up or should I say write up!
annie says
Thinking about ways around whether Commenters have taken a back seat with the
newly fashioned Rxisk Blog.
Nothing is more important than each and every New Rxisk Blog, as R has shown in her clear descriptions of PPPD.
I remember going to a symposium on electronics and at the back of one tent, was the product with a sign saying New Product, New Release. Understandably a Marketing Magazine made fun of this and said Why was this product not outside of the tent shouting New Product.
Now I have looked at this, all I do now is press Blog and there are the blogs with comments.
May I suggest that ‘Blog’ is given a more prominent position, maybe along with ‘side effects?’ which is also too small.
Colour, fonts and position, are so important :
Maybe position Blog above Side Effects, LARGE in its own web box, colours of your choice.
Hope you don’t mind my thoughts.
My ‘career’ took off working for a Scientist who developed a laboratory in his garden with Foetal Calf Serum for Pharma Co’s.,and I developed literature, sold the product and had the most amazing ‘office’ in a country pile, a few minutes away from where I lived. He made me his right-hand man.
Then it was off to an electronics company, Marketing Manager, composing literature, all a bit dry after the Pharma…
Then it was off to an entrepreneur in London, who had developed a unique product, and after writing his ‘how to use’ literature and selling the product, shipped me off to America to start a satellite company working out of an apartment. Travelled all over the US, introducing the product to Transit Authorities, Banks and so on.
I made an amateur painting web site. I had to put things in the designated partitions, its all about arranging words and pictures for maximum impact – bit like a painting, the focus, the light, the point…
Genevieve says
I did some research on Bethanechol.
It appears to only be prescribed in limited cases for certain types of urinary retention (non-obstruction) and off-label for GERD.
I couldn’t find any studies that would support a wider use to take to a doctor. This could make it difficult to get a script.
If used it would make you want to urinate urgently within 30 minutes and has to be used about 3-4 times a day.
Heathline also listed frequent side effects including:
anxiety
depression
drowsiness
fatigue
physical problems such as involuntary movements and muscle spasms
David, what are your thoughts?
Dr. David Healy says
This is an old drug and as you say the only common use at present is where people have difficulty passing urine. There is an older literature suggesting sexual benefits but more recently the case cited of a child’s autonomic neuropathy responding is very much in the right ballpark for people with PSSD.
Clearly if someone takes and becomes anxious on it they have to stop rather than continue but drugs acting like this do not generally cause these problems. Given the desperate situation that is PSSD and protracted withdrawal, and evidence that drugs acting on the cholinergic system seem more likely to support nerve regeneration, this is an avenue to explore – with doctors who are willing to help with monitoring the effects.
There will be lots of doctors who won’t engage but hopefully some of us will have doctors who will work with us on this and who will then be able to report back. If the reports on positive, these will be evidence to take back to doctors who want more evidence
D
Genevieve says
Nicotine patches work on the cholinergic system. Could they also support nerve regeneration?
Dr. David Healy says
we don’t know – but nicotine works on the nicotinic arm of the cholinergic system while bethanecol and pirenzepine work on the muscarinic arm
D
LL says
Dear all
I have been suffering from constant diziness and disequilibriim for the last 9months since tapering Lexapro which I have been on for 13 years. I was first put on an SSRI at 15 and I am 34 now so total 19 years. I went from 7.5mg down to 3mg and spent 3 months almost totally debilitated, barely able to walk around and often dizzy just sitting at my desk or lying in bed. The 24/7 suffering was horrendous. I am now on 4.75mg and I have weeks where I feel dizzy all the time and weeks than it goes away almost entirely, and some days where it is in between. Any other medication change seems to worsen it.
Vestibular tests and MRI showed no damage and rehab has not helped. PPPD diagnosis / vestibular migraine was given.
I found the comments about my nerve endings being fried terrifying as I cannot live like this forever and I am only 34 and I am still not off the Lexapro. Is there any hope for me?
I have now developed tardive akathisia as well.
Sincerely
LL
Dr. David Healy says
LL
A grim situation – the problem is there are a lot of doctors handing out SSRIs to people with PPPD – making some of them worse
David
LL says
Hi Dr Healy
Thank you for responding to me.
My psychiatrist is willing to prescribe benztropine.
Is it worth trying this for 6months while still on 4.5mg Lexapro, or do you suspect results will only come once the offending med is totally tapered? This may be hard if the WD side effect profile continues to build.
While my psychiatrist does “not believe” these things are the result of WD, she seems happy to prescribe me anything I think might help either the akathisia or imbalance.
Side note – Is there a possibility Cytisine could also assist?
Thank you again
Dr. David Healy says
LL
Impossible to answer this. I wish I knew whether you have to stop the Lexapro first. Perhaps look at the Pyridoxal-5-Phosphate post and see if this helps you get off Lexapro and if it does then maybe after that start benztropine in a low does – but if benztropine doesn’t suit – and it may not – think about bethanecol
D
LL says
Thank you very much Dr Healy.
I’ll give all of that a try.
Will be keeping up with your new posts on the ongoing research.
Dr. David Healy says
Please keep us posted on any progress you make
D
Amit says
Hello LL,
I am in the same boat as you are I got vestibular disorder that hasn’t resolved in 9 months. I only took SSRI for a few days. I’m assuming at this point this is pppd. Has benztropine helped you in any way with pppd?
LL says
Thought it worth mentioning that I will be seeing a neuro-otologist the end of August (apparently there are only three of them in Melbourne, Aus). Have been on waiting list for 6 months:
http://www.dizzyclinic.com.au/
I intend to present this blog as well as this piece (although this piece is pretty vague and unsatisfactory):
https://mccare.org/wp-content/uploads/2020/12/A-possible-explanation-for-dizziness-following-SSRI-discontinuation.pdf
If there is anything further scientifically that would be helpful to present, please let me know!
Will share any feedback I get from the specialist.
chris says
LL
I think you need to find a way to taper very slowly indeed. If your psych will engage with this it is well worth considering:
https://www.taperingstrip.com/
I know that it is difficult to believe P5P B6 could stop akathisia but my experience says it can switch it off. In my case I had to go to 100mg but quickly reduced the dose. I have a massive regret in not doing it much sooner being as I had long known it’s important role in GABA, but I could not bring myself to believe it would actually work, it does, especially if you are totally off all drugs that cause akathisia. I hope this helps.
Ruth Francis says
Chris are you still taking p5p? I am taking 20 mg and it’s worked for me mostly but now and again I feel it comes back, not sure if I should increase.
chris says
Yes I take a small amount between 5mg and 10mg sometimes 25mg depending on how I feel and not everyday. I would say if it comes back go to 25mg plus and then pull back. You can get peripheral neuropathy with too much B6 and I’ve had it but akathisia pretty much trumps most things. Let us know how you get on. Another good reason to take B6 is anticancer T cell production is correlated to the metabolism of B6
https://www.frontiersin.org/articles/10.3389/fimmu.2022.837669/full
chris says
Also I would cut out foods high in glutmate and MSG you can re-introduce some of them when you’re totally stable.
https://www.webmd.com/diet/high-glutamate-foods
Ruth says
Thanks Chris I been taking it for a few months now , do you think I should drop it down to say 5 mg and increase to 25 if akathisia returns.
chris says
Yes and you could go beyond, it al;l depends on the person – if it were me I’d be prepared to go upto 100mg again. I was terrified of getting akathisia again, it totally blighted my life day by day. I hope it never comes back for you. Do let us know how you get on.
LL says
Hi Chris
I’m sorry I only just checked back here. I’ve been taking 50 mg of p-5-p for two weeks and haven’t noticed a change. Any thoughts on going higher?
I’ve got liquid lexapro now which I can use to taper very slowly but at the moment I’m holding hoping things will stabilize.
Dr. David Healy says
LL
There is a big divide down the middle of dependence. Some cases involve traditional withdrawal and it makes sense to taper slowly. But with SSRIs and related drugs, the problem seems to be something like small fibre neuropathy – and this is not something taper helps with. Tapering slowly may be just prolonging the agony. There might be some case for going higher with p-5-P and tapering quickly hoping it will alleviate some of the problems.
David
Dr. David Healy says
let’s see that Chris suggests
D
Genevieve says
Are there any success stories from people taking Bethanechol?
Also, what dosages were been taken and for how long?
Dr. David Healy says
Part of the problem is its an old drug and companies will not market or support success stories on an old drug. The only place that will do that is RxISK. Companies market the stories about harms of old drugs. Exactly who do you think is to be doing work on dosages and length of time? It will have to be us – that includes you who reports back on any good and any harms and between us we can build a profile of this and other drugs working on the cholinergic system
I hope to have an article out about all this in the near future
D
LL says
Hi Dr Healy
Am I understanding correctly that if the taper has instigated chronic diziness/imbalance and this is related to SFN, you’re saying that the symtoms may be worse while still on the drug now than if I got totally of it? Or were you only referring to the akathisia improving by getting off?
Thank you 🙏
Dr. David Healy says
You are asking the most awkward of all questions and I have no good answer. There is clear a dependence syndrome on serotonin reuptake inhibiting antidepressants and tapering makes since in terms of managing that. But a number of people who have problems coming off antidepressants I am certain have a peripheral neuropathy which is made worse by or revealed by the taper. Tapering is not going to fix this. It seems possibly that it might even make it worse by keeping you on the drug that is causing the problem for longer.
I don’t have any answers for this. It is part of the horrific bind drug companies, assisted I hate to say by Psychiatric Professional Bodies, have put people in.
D
LL says
Thank you for getting back to me Dr Healy.
At 3mg if Lexapro at the start of the year I was incapacitated and miserable with the balance disorder and dizziness 24/7. A couple of months after reinstatement to 6.5 I seemed to get some relief but never back to normal. At 4.5 I am up and down.
This information honestly makes me think even tapering slowly to 3mg will put me back where I was and im better to stay put so I can function. If I had to go back to that I wouldn’t cope.
This is very disappointing as all I want is off the drug but it seems like I can’t take the risk.
Thank you for explaining what you know.
Dr. David Healy says
L
In the next day or two on RxISK and davidhealy.org there will be posts about anticholinergic drugs like benztropine. It gives you a background story and academic articles on these drugs which at the moment offer the best chance for peripheral nerve regeneration.
Its difficult to say what I would do in your situation – my ideas of what I would do often turn out to be just the opposite to what I actual do when in a real life situation. But I think I would lean toward taking benztropine or something like it in a very low dose – it would need to be taken for 3-6 months – there will be some more instructions in a post in two weeks time.
David
LL says
Thank you Dr H, appreciate your candour. Look forward to reading the pieces. Would be good to hear if ‘R’ has had any improvement with treatment. I’ve been keeping a daily symptom graph on excel for some months which will be useful data if I try benztropine.
LL says
“The surprise is that some people can find this terribly difficult and have even greater problems when they try to increase the dose back to previously comfortable levels. Something has become unstable […] something else is going on in these protracted states not typical of withdrawal.”
Thank you so much for articulating this.
I’ve been reading around the topic for months but the way you stated this made my situation the clearest it has been to me this whole year.
48 hours after increasing my SSRI from 3mg back to 6mg back in March, I woke up grinding my teeth, horrific, gruesome images in my head and bizarre, phantom crawling sensations under my skin that have not abated. I had some of these already after withdrawing, but they became infinitely worse. Six months later I have not stabilised. I now understand why – I am not in WD, I am in “neurotoxicity”.
It has been impossible to describe the horror of this experience. Of knowing something is so very, very wrong, of trying to find one’s way back to the world other people live in, while living through sensory experiences so horrific and bizarre that they ought not exist. I feel things daily that are so foreign to the experience of being in a body, the same body I have occupied lifelong, I can scarcely believe they are happening, even as they happen.
“Something has become unstable” indeed.
I am fortunate that benztropine is available in Australia. My goal is to get to 2.5mg if I can manage the dizziness and balance issues, and then start it.
Dr. David Healy says
This important comment has been posted twice. See the response under Withdrawal, PSSD and Cholinergic Drugs
D
LL says
Hello Dr Healy
I continue my Lexapro and lithium painfully slow taper and while akathisia symptoms continue to improve with the taper, balance and dizziness continue to get worse with episodic migraine. Now house bound and often bed bound.
Neuro otologist suggests vestiblar migraine and PPPD and says it won’t improve without meds. He suggests Sandomigran (Pizotifen) or Lamotrogine. Sandomigran is a serotonin antagonist, anti Cholinergic and anti-histamine which is related to Cyproheptadine. Do you have any thoughts on this drug in the light of all we know?
Currently on 4.3mg Lex and 250mg Lithium.
Best, Lou
Dr. David Healy says
Lou
Vestibular migraine is one of the options neuro-otologists turn to. I first heard about this nearly a decade ago and it was linked to SSRI withdrawal. I think there might be such a thing as VN but linked to SSRI withdrawal it is caused by the withdrawal and is not an independent disorder that is going to be fixed by more SSRI as the docs telling you you have PPPD or VN are inclined to say.
I hope to do some posts on Functional Neurological Disorder soon that may shed some light on what appears to be going on in the doctors not in you.
In the meantime, the question is whether to stop Lexapro as quickly as possible – perhaps using P-5-P. yes it might be hell but it might be the quickest way to get to somewhere better. I’m not recommending this just opening the door to the possibility.
Cyproheptadine or pizotifen sound reasonable options – not foolproof but not bad options. They might help with Lex withdrawal.
I personally would not give lamotrigine to anyone – this doesn’t mean it can’t help some but I think it is more likely to harm. This is particularly the case when combined with lithium.
Keep us posted on what you opt to do and what happens
David
Lou says
Thank you very much for getting back to me Dr Healy, it’s much appreciated.
Neuro did acknowledge he’s seen this many times before from med withdrawl, not sure if that is surprising or not.
I’ve been reducing lithium more than lex lately and noticing worsening of VN symtoms now with the lithium reduction which has not occured before. Is there any logic to this or just the result of complete dysregulation?
Appreciate your thoughts on the meds options. May try small dose of Sandomigran and see how I go.
Lou says
Any updates from R, the subject of the post, on any treatments or improvements?
Thank you
Lou
Ruth says
Hi Lou, I have had significant improvement but not with drugs. Vestibular rehab exercises tailored for my specific problems. Also mind body therapy, I am not fixed by any means but better than I was .
Lou says
Hi Ruth
That’s great news.
I hope you continue to improve.
Is there a specific mind body program you’re doing?
I’ve been watching the steady coach and also “Pain Free You” on YouTube which has a mind body approach. As well as some VRT. I had two great months! and now I’ve relapsed but at least I know improvement is possible.
Amit says
I’m in the same predicament. What have people found help with for withdrawal pppd. P5P was very helpful with akathasia. In fact niacin and managanese were a nice add on for akathisia.
I’m still struggling with PPPD and Visual snow syndrome. None of the supplement options for visual snow have shown even 0.5% difference. Except choline, dmae, bethanechol (all cholinergic stimulants) even in low doses cause worsening of visual snow for an hour or so. I’m inclined to try if benztropine as an anticholinergic would be helpful?
Does anyone have any feedback to share about using benztropine?
Ruth says
Amit, there is a website called The Steady coach, it has been very informative and helpful to me. Check it out
Amitabh Varma says
Yes. I have been attending the steady coach program with yonit Arthur.
Dr. David Healy says
Can you tell us more about Steady Coach. What do they do about all – and secondly what do they understand to be behind how what they do might help
David
Ruth says
Hi Dr Healy
, it is hard to explain but it is about the nervous system being stuck in fight or flight mode and it is based on a book called The Mind Body Prescription by Dr John Sarno. Maybe Amit can help explain?
Amit says
In the steady coach group, they provide a fundamental understanding of how pppd is a functional neurological disorder. Which is in fact quite true as it results from an injury (vestibular) and past trauma, stress or inner turmoil are the perpetuation factors. This aligns with Chris’s story, akathisia is the “inner turmoil” perpetuating the dizziness. Symptoms are real, but typically unmeasurable other than on a functional mri which presents with heightened activity of the amygdala. These symptoms are a safety limp mode system to keep the person safe as the brain perceives a huge threat. It does so by giving neurological symptoms, and cripples the person.
recommendations are to manage stress with breathing, process past trauma with EMDR, reprocess emotional nervous system maladaptations with IFS and treat symptoms with kindness and compassion. Once the brain perceives the threat – stress, trauma, inner turmoil are neutralized, the “check engine light” goes off, and the brain goes back to its original program and dizziness and other symptoms go away.
While the practitioner who runs the program is neutral towards anyone choosing medications or not, SSRI’s and benzos are often discussed, but mostly by the patients. The practitioner only provides her input on evidence and doesn’t recommend anything in particular. It’s important to note, some patients are extremely disabled by their pppd disorder, and medication gives them an opportunity to get out of bed. Increasing dopamine from ssri engages the stress, memory, learning, motivation parts of cerebellum and decreases stress response towards symptoms. Naturally most of her patients are in her coaching group, because they don’t want medications, they would prefer to heal the natural way and build safety in their nervous system.
There are also some exercises such as somatic tracking, visualization techniques, journaling trauma that are including in the program,
It’s interesting Chris mentions turning from a timid, caring person to a Bolshee. From the perspective of nervous system safety, being a bolshee is better.
People who are caring, timid, very intelligent, obsessed with perfection are predisposed to developing functional neurological disorders. There is some kind of neurological science behind this. The personality of the individual predisposes them to FNDs. So naturally, when someone like Chris returned to timid, caring state. Add the inner turmoil of akathisia, it’s a perfect recipe for a functional disorder such as pppd. But Chris got better, because he resolved his “trauma” – akathisia. Which is the primary goal of the steady coach program, understand your traumas and resolve them.
As it turns out, all along I thought I had pppd, but my past history didn’t align. But after reading Chris post I realized I have SSRI induced akathisia, which was causing immense fear and hyper arousal, turning me into a timid person, once I began p5p and niacinamide. Symptoms began resolving quickly. The smaller symptoms withered away in a matter of weeks. They haven’t completely resolved, the worst is the last to leave, but atleast I got a hold of one of one of my traumas.
Gaining this knowledge of how trauma and inner turmoil perpetuates pppd was helpful. And how turning into a bolshie represents nervous system safety. A person able to defend himself from emotional injury and trauma.
Amit says
Ruth
Did P5P give you relief from visual symptoms and tinnitus? I’d love to know if something helped with that. It seems like we’re experiencing the same pathology.
My Symptoms:
1) Visual Snow Syndrome
2) Tinnitus
3) Postural and Visual Vertigo
4) Body Zaps (Shocks)
5) Skin Numbness
6) Balance Problems
7) Tick, Tremors
P5P gave me a fair bit of relief with 3, 4, 5. Not complete.
The below “completely” helped me with 6 & 7. It may help you.
https://isom.ca/wp-content/uploads/2020/01/JOM_1976_05_1_02_Manganese_and_Niacin_in_the_Treatment_of_Drug-.pdf
Ruth says
No for visual and tinnitus