Editorial Note: Ages back, Sally MacGregor wrote this piece to follow up to her Olanzapine experience – Olanzapine Withdrawal: Sally’s Story. The original piece has routinely been among the top ten RxISK blog posts visited. This update slipped between the cracks. But here it is.
Time for a progress report. I was in feisty mode last time – determined not to be beaten by the ongoing aftermath of twelve years of that motherfucker of molecules. It’s hard to maintain optimism in the teeth of ongoing problems, but mostly I succeed. Sometimes I wish that I could swap bodies with the various medics who dismissed the writhing cramping toes, and tingling arms, deranged hearing and balance as ‘minor’. Then see how they cope with the perpetual sensation that I’m going to topple forwards when I lean forward to pick up a cup of coffee, or backwards when I look up to reach a glass off the shelf that is just above my eyeline. Getting into the bath every morning and feeling seasick from the water as it swirls. ‘Have a shower’? not so easy when you close your eyes under the spray and immediately lose any sense of where you are and have to hang onto the shower rail. Try inhabiting my physical world for a day, a week, six months – or three years – and see whether you still call such things ‘minor’. Buying new shoes and having to abandon them after a few days because they make me feel sick sounds funny – but it’s not all that amusing. Something to do with disrupting my precarious balance, because I need, literally, to feel the ground beneath my feet.
I was hoping this year I would be able to sit in the sunshine for ten minutes before getting so hot that I feel faint, but, no, not even in our cool English summers. Direct sun is simply intolerable, but when the ambient temperature goes over 21° – I’m wiped too.
The acute hearing distortions have subsided and I can talk to most of my women friends now without a look of pain on my face, (something to do with the higher pitch) and intercoms in rail stations are easier to manage. But TV and radio are mostly off limits – too distorted and hard to hear. Ditto the phone – a distressing tendency for voices just to fade away. Processing sound is a major problem, as is the feeling of pressure in my ears, which comes and goes (best described in the list of Meniere’s symptoms). And tinnitus…which is actually the least distressing problem I have, although I know it drives many people mad.
A new problem has emerged. My voice fades to a husky whisper towards the evening. I had big wheezing problems on olanzapine – a startling, whistling noise, which troubled me for a few weeks at a time, then went away for a bit and returned. The wheezing is much less dramatic now – but my voice doesn’t seem so good: it kind of disappears. I’m aware that often people have problems hearing me clearly, and try and remember to consciously speak more slowly and loudly. And the muscles round my mouth misbehave towards evening – a kind of chorea I guess – which could be linked to the chlorpromazine I took way back. But that was over ten years ago – so why now? Unfortunately it gives me a disgruntled scowl – which made me think about how medication side effects can make you look cross when you actually feel perfectly cheerful.
I took my painful wrists, fingers and elbows to the GP in the end. I couldn’t stand the serious pain every night, which woke me shouting, or the flare-ups of red swelling in two fingers on my left hand. (Try getting your bra on when one hand is so sore it brings tears to my eyes…). ‘osteoarthritis’ he said – after testing for rheumatoid arthritis. Wear and tear – exercise them. So I do, flexing them as often as I can, ditto my wrists. Makes no difference whatsoever – and actually I can’t flex the swollen fingers when they’re bad. Feels more like gout to me than arthritis – but what do I know? The painful swollen elbows are equally debilitating – lifting and carrying aggravates them no end. ‘Tennis elbow’ my GP said. Why would I have that, I asked, given that I’ve not played tennis since I was 16. ‘Decompensation’ apparently – which I gather means the general dilapidation of old age. I remember my grandmother vigorously polishing her furniture into her 80s and my mother carrying shopping home every day until she died – and think ‘I’m 60, not 80’. And wonder why the joints that should be packing up after a decade of carrying an extra 6 stones – my knees and hips – are perfectly flexible and painless. My feet give me increasing problems though – the ‘moving toes’ syndrome I now realise is probably simply a tardive dyskinesia – but has progressed to painful cramps and a small devil stabs my toes viciously and randomly with a sharp pin. Classic peripheral neuropathy? Whatever, walking is getting harder. Much harder.
Having spent months vigorously denying that I had diabetes, citing the fact that my blood sugar sank well below the demarcation line as soon as I stopped taking olanzapine – now I have it again. I discovered this, following a general MOT blood screening and an ECG. ‘You have a fatty liver too’ my GP said: ‘You know, like fois gras, where farmers pour grain down a funnel shoved into the goose’s mouth until it overflows….’. ‘OK – I get the picture. That’s why I don’t ever eat the stuff’ I said hastily, to shut him up.
And your heart’s working a bit fast, he continued. By that time I was so aghast that all my metabolic systems seem to be collapsing I just said ‘Oh’. Went home and worried. Returned for more information: ‘It’s to do with your blood pressure’ he said which made no sense to me, because the dramatic swinging BP has settled down nicely. ‘Your heart’s too strong’ he went on. ‘It’s sending the blood round your body unevenly’. When I asked if it could possibly have anything to do with all the meds, he said firmly: ‘No’.
I’ve simply given up trying to get any acknowledgement that any of my life-limiting ailments could have anything whatsoever to do with medication. When you’re fat (the blubber is still well and truly there) and unfit – you don’t stand a snowball’s chance in hell of being deemed to be anything but completely personally responsible for your own wrecked body.
In the meantime, it’s the overwhelming, poll-axing bouts of exhaustion that most impair daily life. I think about people with ME – the constant juggling: you wake feeling unusually well and think ‘I need to make the most of this’ – but with the creepy knowledge that probably you’re going to pay for it a few days later, when you can’t actually raise your head off the pillow because you’re too bloody tired and ache all over. Damned if you do and damned if you don’t. (I’ve hunted in vain to find any documented link between taking antidepressants and subsequently developing ME – maybe there isn’t one, but a hunch tells me that the rise of ME probably correlates, however unscientifically, with the advent of the SSRIs). I have a lot of hunches.
I’ve also thought how complicated my story is: I wrote about olanzapine because that was the drug that I took for longest, and seemed to have been the most poisonous. However, I still take a benzo and zopiclone, despite heroic attempts to stop – and a decade ago swallowed every class of psychotropic known to humankind. I realised, a bit late in the day, that some of my legacy/aftermath/damage may well be down to all the antidepressants I took, even though I’ve not taken any since 2003. And of course the benzos.
Oh and the book. It turns out that writing is a far far harder thing than I’d ever imagined. Now in the hands of a literary agent, who is trying his hardest to nab a publisher, so keep your fingers crossed.
mary says
Thank you, Sally, for the detailed update. So sorry that things are still far from resolved for you – although, maybe, you would describe yourself as being in a slightly better place than when we last read about you in full detail?
We need your book and I need your story. (Please see David’s blog for my reason for saying that).
I suffer from a hearing loss, caused apparently, by recurring ear infections as a young child. The problem lies mainly on my left side. Everything that you say about balance, toppling forwards/backwards, dizziness etc., I can fully assure you are all connected to inner ear problems. I always say that I can lose my balance on a thick wool carpet never mind a step or two! Escalators are a nightmare – especially coming down. Was once stuck at the top in Next for twenty minutes trying to settle myself down sufficiently to step on without toppling over and landing at the bottom faster than any escalator could carry me! I can laugh now – could have cried then!Many people think that hearing loss can easily be rectified with a hearing aid – mine can’t and I very much doubt if yours would either. I can’t even put my left ear to a phone, not simply because I won’t hear clearly but it would stimulate the tinnitus and leave it at a highly disturbing level.
I am the lucky one – I only have this problem to contend with. For you, the ‘hearing problem’ is just one of so many. I just wanted you to know how closely linked that particular group of symptoms were. Living with them, and only them, is a case of adjustment; living with them and so many others must be pure hell.
Sally Macgregor says
Good morning Mary
that’s so interesting, the similarities in your balance problems connected to hearing difficulties – I can identify precisely with the impossibility of escalators, and the way a very minor difference in the thickness or softness of a carpet can utterly destabilise balance (uneven grass is a killer). I think one-sided hearing loss is tough too as one loses stereo sound and locating where a noise or voice is coming from is impossible. I’m sure the hearing/balance thing is closely connected but I did have a series of exhausting inner-ear tests which gave my vestibular system the all clear. The ENT consultant said it was a ‘deep brain’ thing. However – all the info about similar symptoms, deriving from different types of damage, must surely help the process of mapping the effects of psychotropics?
As for being in a slightly better place? A different place I guess. Certainly much better than the very first post-withdrawal post but coming to terms with long-term difficulties brings its own challenges. I realise, looking back, that some of the insouciance around life post-olanzapine was part of the legacy! A kind of carefree/couldn’t care-less-ness which was very enjoyable, but has waned to a degree and I guess was linked to a disinhibition that was part of the withdrawal process. Certainly my language was wildly OTT. That’s tamed slightly, partly as the small grandchildren started to repeat some of Grandma’s more colourful swear words which didn’t go down too well with the parents.
Veronica Ordonez says
Hi Sally my son is going thru a similar true story like yours can you help me plz no one will hear me.
Hwayah says
Hi Sally how are you now? Any updates healthwise?
Sally Macgregor says
Mary – have just looked on David Healy’s blog for your reason for needing my story – I’m bad at tracking down comments often – could you kindly direct me to which post?
Thanks
mary says
Sally, the reason is that I want as many examples as possible from England with which to target the complacent lot in the House of Commons! The comment is 3rd from the end of ‘ Why do people sing’ – dated July 31st.
Timothy Moss says
Sally,
Thank you so much for all of your incredible achievements in the midst of the endless pelting of this pitiless storm of the kaleidoscopic onslaught of psycholeptic “medication” poisoning.
I practiced medicine for forty years.
I believe you.
WE NEED YOUR BOOK.
To write with such self discipline and dedication to prevent similar devastating harms to those who might trust psychiatric medication, but who might, at least initially, have a choice, deserves a place in a new order of honours lists!
Furthermore, your brilliant series of Rxisk posts on Olanzapine devastation et al merits a platinum disk.
Other Registered Medical Practitioner.
annie says
This is a very well written and thoughtful piece and you might be interested to read the link posted by The Cat from the comments section and this was in 2007
http://www.madinamerica.com/2016/07/did-i-choose-the-wrong-profession/
http://web.archive.org/web/20110827055731/http://zyprexakills.us/
Zyprexa is Eli Lilly’s best selling drug, used to treat schizophrenia and bipolar disorder. Eli Lilly recently agreed to pay up to $500 million to settle claims relating to Zyprexa. This latest settlement brings the total paid by Eli Lilly to resolve lawsuits involving Zyprexa to more than $1.2 billion.
Sally Macgregor says
Thanks for the links Annie – very interesting and appalling. Eli Lilly have struggled since Zyprexa/olanzapine went off patent a year or so again..that, plus losing the Prozac patent. However they are hot shit in the diabetes field, are massive sponsors of Diabetes UK and seem to fund diabetic education for GPs. So, if everyone like me who has hyperglycaemia as a result of taking olanzapine ends up on a Lilly drug – they’re still making a hefty profit.
Debra Newton says
Zyprexa Lawsuit how to claim it
Susan says
Please tell me how ASAP
Carla says
Dear sally,
Thank you for sharing your nightmare story.
So many of your experiences are in parallel with what so many patients are experiencing today.
Clinicians need compassion not a book.
Many have closed their doors to the wise.
A patient could be a target of ill health if they end up in the wrong hands.
Too many drug companies are misleading the vulnerable and creating revenue for the clinicians by creating diseases that never existed.
Every patient has a story to tell.
I believe that many patients have been ra**d by clinicians and drug companies just to benefit their pockets.
Healing is a billion dollar industry infested with one hidden agenda.
People are starting to understand this and many hide behind a white cloak of lies and continuous deceit.
A problem only becomes evident when many people are given a voice.
How can the patient be rsponsible for the damages a drug induces?
This is a cop out for clinicians and drug companies taking NO responsibility of damaging the good health of people.
You end up with one disease and by the time you finish with a professional you have about a dozen or two added to you ill health list.
Perhaps doctors should write a book on how they fool their patients.
Sally, I wish you all the best with writing your book.
I hope it brings you peace and justice for all you have endured.
Many blessings, Carla.
Sally Macgregor says
Carla
I’m very slow in saying ‘thanks’ for that lovely comment – and for all the contributions you’ve made. I hope things are going better for you now but we all struggle on, one way or another. Thanks to you too
Carla says
Dear Mary,
I honestly believe that there needs to be a Royal Commissions and Public Inquiries into these medications that have harmed and killed so many innocent people.
As far as I am concerned, the welfare and safety of the public come first.
There needs to be transparency and accountability and if there are organizations sweeping important information under the carpet, it needs to be made public.
Our stories need to be heard, loud and clear.
Too many people who have been impacted by ‘ so called, safe medicines’, need to tell their story.
It may shed some important evidence that needs to be uncovered.
By speaking up, the public are made aware of issues that could potentially impact their wellbeing.
More whistle-blowers need to come forward and state their case.
We have been judged, silenced and ignored for way too long.
There have been so many enquiries into other systemic problems, why not this one?
I am certain that many who have participated their time, dedication and personal experiences to RXISK, would welcome the opportunity to inform the public.
If we keep getting the same standard responses, over and over again, the public will soon start to believe that no one has an interest in our safety.
mary says
Well said Carla! I share your views entirely – especially as regards the need for an enquiry into the devastations caused to so many people’s lives.
I would imagine that it’s all too easy to ‘keep quiet for an easy life’ if you are lucky enough to recover sufficiently from these medications to have a fairly ‘normal’ quality of life. But, in doing so, where does it leave the ones who have not managed to recover? Surely it is our duty, as the ones who have witnessed the suffering or as the lucky ones who made some degree of recovery, to keep on working, tirelessly, to show our support for those who are still far from well and also to show respect for those for whom these medications created more havoc than they could handle. Their lives must not be allowed to be a mere statistic nor their deaths simply counted as ‘things that sometimes happen with mental health problems’.
Life is sacred – each life, whatever its condition, is worthy of the best that we can provide for each other. Pity that the truth of that statement holds so little meaning in many high places these days.
Kelly Obrien says
My 28 year old daughter lost her life in the care of psychiatric facility. She laid unconscious on floor for 30 min. Who knows how long she was there before another patient alerted staff. She arrived at hospital completely brain dead. What do you think happened. How can I bring awareness to the fatal consequences of prescribed over medicating.
Carla says
Dear Mary,
Your compassion and kindness are always appreciated.
Thank you from the bottom of my heart.
Looking back, I have come to realize that I have been too harsh on many clinicians and those in higher places.
I believe that there are still good people within the medical and political infrastructure.
Many got into the political arena to help and serve the people.
Many became clinicians to heal the best way they could with the tools they have got.
To tarnish everyone with the same brush would be very unscrupulous of me.
There are so many good people trying to achieve the very things we all want.
Perhaps all the challenges are there to make us stonger for our true soul purpose.
If you and I ever get that opportunity to be the voice for those souls who have been so severely harmed or tragically died by ingesting these medicines, we will leave this life knowing that we tried to make it better for others.
Although, we are exhausted beyond what many can tolerate, I strongly believe and have faith that those in higher power will be more than happy to pave the way for prosperous changes.
The changes we have all been waiting for will benefit everyone.
Everyone is waiting for a wind of change.
We must remain optimistic through adversity.
To everyone who has been impacted by perilous medicines, please do not despair.
I all leave you with a quote from Geraldine Solon. It is a quote that we should all keep tucked away in our heart.
” A lesson for all of us is that for every loss, there is a victory, for every sadness, there is joy, and when you think you’ve lost everything – there is hope.”
Carla says
To everyone who has been harmed by a perilous medicine, please do not be ashamed to speak up.
Why would professionals want to destroy anyone who has been harmed by a perilous medicine?
If anything, professionals should be defending you because you ingested something that harmed you.
It is in their best interest to advocate for you especially if you have been unjustly treated. By advocating, they can make other consumers aware of the risks that are suppressed.
Why is there so much dishonesty surrounding these so called ‘safe medicines?’
If your health has suffered and no one has helped or covered up information that should be disclosed to the public, I do not see any justice in what has happened to so many innocent people.
The Citizens Commision On Human Rights is a big establishment which protects the rights of all citizens.
Why are they not protecting consumers from perilous medicines?
Someone has to be our voice.
Carla says
Some people are treated worse than criminals for speaking about their experiences, relating to these medicines.
I wonder if this undesirable, misaligned, innapropriate, dysfunctional, biased, decieving and ambiguous culture will ever change.
I believe it will and it is not until the people hear shocking evidence surrounding these so called safe medicines that those who have done the unforgivable will be held accountable.
If one has the right to tamper with the molecular structure of these medicines than the people who has been injured has the right to state their case without all the lies and deceit.
The scales of justice was tipped in favour of those who abuse their power and treat the vulnerable with the utmost disrespect and lack of dignity.
Jamal says
Hi,
I am tapering olanzapine and have some balance issues in the morning occasionally. a couple of times it hit me pretty bad and I had to go to the doctor. I discovered that taking an electrolyte mix used for fitness solved the problem, atleast so far. I use one called Electro mix, which is just a little satchel of electrolytes like potassium and magnesium you mix with water. there are a lot of other brands, I used a nother one called nuun. even gatorade, but it was too sweet for me.
If I wake up dizzy I take a glass of it and feel better pretty soon.
in terms of healing, I havent read in complete detail your whole hisotry, and this might sound stupid in comparison to your problems, but you might start doing some meditation, it has a subltle effect that builds up over time to heal the brain.
best of luck!
Heather says
I just started putting in my name to contribute, having found Jamal’s contribution of 12th September2016 very interesting, as it chimes very well with my thoughts on this. The following paragraph just popped up in the writing space, I don’t know where it came from, but it’s also very interesting and I didn’t want to delete it!
By unknown contributor —–
The holistic view of course includes the objective scientific explanations of physiology and accepts that that people have inner experiences that are subjective, mystical, spiritual or religious, which affects their well being and their beliefs.
Back to my own contribution again ——
I was so pleased to read what Jamal wrote about using an electrolyte mix to help him with dizziness on waking, whilst he tries to get off Olanzapine.
I only discovered RxISK a few weeks ago and have been reading all the posts on both this Blog and on David’s Blog which have given me a lot of new insights. My own son took his own life when put on Olanzapine for just a few weeks, on top of other drugs like Sertraline. His problems had started 11 years before that, when he took the acne drug RoAccutane/isotretinoin, which made him suffer a weird sort of low mood so he was given Seroxat which triggered a mini psychosis. But he managed to keep going despite akathisia and dreadful sensations coming off Seroxat in 2002. The doctors didn’t understand what was happening to him, and kept lobbing in drugs like Risperdal, even to the point where he was seemingly fitting on them.
But we knew about a balanced powder of vitamins, minerals, which was totally devoid of wheat, egg, milk or any other common allergens, as we’d used it (still do) firstly to detox to get rid of organophosphates which had made us ill (from dipping our sheep) and to line our gut before breakfast every day. Like Jamal’s, you mix it with water. We also consulted doctors who considered diet, vitamins and minerals vital to neurological health. We gave this UltraClear Sustain (made by Nutri) to our son, and every time he had periods of using it, the awful feelings in his brain used to lessen. I can see now that this is partly how he managed to keep going, working, coping, for 11 years.
I realise that the two Blogs on RxISK are for sharing the knowledge about the risks of medication, but I do feel that if my son had read them and got the feeling that there was no hope of recovery from these effects, he’d definitely ended his life sooner. I guess none of us really KNOW for sure that there is no hope of recovery. So sharing info like Jamal has, and also on a previous Blog somewhere Larry commented about the work of Dr Carl Pffifer, these things are worth considering and reading about. I know one shouldn’t raise false hope, but these are natural elements which just restore balance to the brain’s cells, it’s just like nurturing a sickly plant, so long as it’s done gently and sensibly. How marvellous it would be if bloggers could run their own trial – DH comments somewhere that there have been no trials to show these things work.
Sadly, I think my son could have kept going if he had not been shouted at and terrified by an extraordinarily (we feel) stupid arrogant psychiatrist.
Eileen says
I would like to describe my horrendous experience with Zyprexa. First, I would like to describe the events, that led to a Bipolar Diagnosis. In January 2001, I developed persistent insomnia, which lasted for around six weeks. In the prior December, I was diagnosed with an Ovarian Tumor, that had a 50% of being malignant. At the time, I was a Registered Nurse, specializing in Cancer Care. I was well aware, that the survival for that specific type of cancer, was less than 20%. I was referred to a specialist, in oncology surgery. It was Christmas time, and he was on a six week vacation. So, during the six week delay in surgery, I became very anxious, with obsessive thoughts on possible outcomes. Eventually I had the surgery, which proved to be benign. Several weeks after the surgery, was when the sleep issue started. Thus, I went to my doctor to get a short prescription for sleeping pills. My doctor felt I was depressed, a diagnosis I absolutely disagreed with. At that time, I was so sleep deprived, I would have taken anything she suggested. She gave me a prescription for Celexa, an SSRI antidepressant. Reluctantly, I had the prescription filled, and took one 20 mg pill that evening. Within an hour, I was in full blown psychosis. At the time 2001, Eli Lilly, the manufacturer of the first SSRI , Prozac, were aware that SSRI medications caused psychosis, and sucide ideation and homocide. Those side effects were not written on the medication label. Thousands of lawsuits were filed against the manufacturers. but were settled out of court, so the general public, were unaware, myself included, about these dangerous side effects. Due to lies, deceit and propaganda, Eli Lilly, convinced psychiatrists, that if an individual had a psychotic break, after taking an SSRI, then they must have, some, as yet undiscovered mental disorder. Psychiatrists took the bait, be,ieved the misinformation, and fabricated the ‘Bipolar Diagnosis ‘. Prozac came on the market in 1987, and soon after, there was a huge rise, in the number of people being diagnosed with Bipolar Disorder. Prior to 1987, Bipolar Disorder, was seen very infrequently diagnosed. So, that is how I got my ‘mental diagnosis ‘. I probably had delayed anxiety, which may have responded to an anti anxiety pill, sleeping pills and cognitive therapy. I was prescribed Zyprexia, which coincidentally was also manufactured by Eli Lilly. A week after starting Zyprexia, I started to sleepwalk. I would go to bed, and sometime during the night, get up and walk around my house. I would have no recollection of getting out of bed, and no idea where I was. I would try to locate myself, by using my hands to touch items of furniture,
walls, doors etc. Once, I made a positive identity of where I was, I would wake up, and go back to bed. I was terrified going to sleep at night. I discussed the situation with my psychiatrist. as I was absolutely sure, the Zyprexia was the cause of my nightly walks. My biggest fear, was that I would fall down the stairs, leading to the basement. My psychiatrist felt the benefits of Zyprexia. far exceeded my sleepwalking concerns. Exactly, one year, since I was prescribed Zyprexia, I fell down the stairs to the basement, landing on my head, on the concrete floor. I sustained a large depressed fracture of my skull, and was transferred in critical condition to The Head Trauma Unit, at a local hospital. There was bleeding into the area of my head, between the bones of the skull and the outer covering of the brain. Pressure was building up, as there was no place for the blood to escape to. If the bleeding continued, then a hole would have to be burrowed into the skull, to relieve the pressure. I had daily CT’s of the brain, to monitor the bleeding. Eventually after three days, the bleeding stopped. Naturally, I suffered a severe concussion and have no memory of that period in the hospital ICU. I was discharged after two weeks, with severe short term memory recall. Once the swelling subsided, my cognitive capabilities return. In view of the severity of the accident, Zyprexia was discontinued. Within a week, my sleepwalking stopped.
Now, sixteen years later, I am questioning the validity of the ‘Bipolar Diagnosis ‘. I have started tapering the dose of Seroquel. an antipsychotic medication. I believe I was miss diagnosed, thanks to the lies, deceit and propaganda of Big Pharmacy. Thanks to sites like this one, books such as Anatomy of an Epedimic, and Medication Madness etc, I am a much wiser person today. My psychiatrist should have filed a lawsuit against Eli Lilly, but he, like other psychiatrists at that time, were enjoying free dinners, subsided weekends at Los Vegas and elaborated cruises, on the backs of people like myself. The one thing , I vividly remember, soon after my diagnosis, was that when I visited his office, he had a cupboard, filled to capacity with free samples. He used to hand out these toxic medications, as though they were candy. I am in the process of looking for a new psychiatrist, who will partener with me, to eventually become drug free.
Jeff says
At 42 years old i myself have been tied to the shit since my 20s. Why is it there are so many post pertaining to negative outcomes and still the pill pusher is a fuk-tard for further discussion? I fought SSI-disability with my ducks in a line and a line of health problems not mention a new addiction to amphetamines because they made me get up and function and stop sign! they said no you continue to work but your future work should be less mentally/physically taxing! Duh further below poverty lacking education is so helpful! It may sound morbid but your personal efforts and your voice being heard is inspiring and more structure for the other people that are with you and I, them-Us! I hope your book takes the trash to the curb. As well if it brings you fortune if you even care about that. Most rewarding any kind of closure would make my day. I wish u the best sharing thoughts and kudos for your time…
Robin Rixon says
Cant get liquid olanzapine in Australia Chemist told us to dissolve 5mg zyprexa zydis wafer in 10mls of water and suck it up in syringe without needle then you can reduce amount a little at a time. 1ml equals 0.5mg of olanzapine that way you can accurately reduce by small amounts. Use zyprexa zydis only as other brand wafers dont dissolve very well. I do this for my wife Rob. Good luck to you all on this nightmare path.
Coryn says
I hope everything is going better for you.
My son, 26, is going through withdrawals from olanzapine. We just found out his doctor, where he received mental health care, dropped him. I believe she dropped him because he refused to be a guinea pig for a drug that he would have to get blood work done weakly because a high risk of kidney damage.
My son is the best person I have ever known. It scares me knowing that because we’re basically lower class means he’ll get no help and maybe even worse (used as a guinea pig). I pray for the day we all make a noise against the pharmaceutical companies. Thank you for your story.
Rob Coughlin says
Hi Sally. I read most of what you’ve written and thought I’d share my experience of prescribed medication including olanzapine with you.
I have been prescribed a number of drugs to treat symptoms I developed as a result of my advancing alcoholism, long before I, or anybody else was aware of the self medicating with alcohol and various other drugs, being complicit in the problem.
These symptoms were mainly depression and anxiety, and over the years I was prescribed Tricyclic and SSRI antidepressants, diazepam, zopiclone, buprenorphine, and initially Mellerill ( an anti psychotic) and then Olanzapine when it was deemed that Mellerill was an unsafe drug to take.
My relationship with anti psychotics started when I was 25 years old, and continued almost continuously for the next 30 years, with breaks due to when my alcoholism progressed and I found myself homeless for the best part of 6 years and when I fled to The Gambia to try and cope drug free ( prescribed and non prescribed) for 3 years.
After 3 years in The Gambia with no medication and no support I had a breakdown, returned to the U. K, picked up a drink again after 9 years of abstinence, and hurtled into 6 years of utter hell which I won’t bore you with here.
I managed to get into treatment eventually, and came out sober but still on Sertraline, diazepam, buprenorphine, and 20mg of Olanzapine.
I share your total lack of confidence in the medical fraternity regarding issues on medication and I made a decision to somehow or other try and wean myself off all of it.
I didn’t refer to my G. P because I felt that would just make it more difficult, and I ser about doing it methodically and gradually, by taking the medications out one by one. First was the diazepam, then buprenorphine, third was Sertraline and the last to go was the olanzapine.
Like you I did it very very carefully, and sometimes I had to be very patient especially with the last bit of each drug but I finally managed to get clear of them all, and it took me 5 years.
I am a member of a fellowship for my alcohol problems and this was a source of tremendous support while I was doing this. The problems started when I finally came off the last tiny bit of olanzapine and lots of things seemed to happen at the same time.
I had to move house, I published a book I’d been working on during the previous 5 years, was now completely drink and drug free, and I got into a relationship with somebody I decided to rescue from her own alcoholic hell.
Initially it felt like a firework had gone off in my head. All the things that had been suppressed for years came back in spades, and while in some respects it was exciting and awakening it was also pretty unmanageable as well.
I relate to the anger coming to the surface ( I had a physical fight with my new neighbours) my sex drive went through the roof( again enjoyable in a way but also very very hard to live with), Insomnia struck and continues to this day, I had auditory hallucinations, and a sense of ridiculously heightened awareness of sounds, and other people’s emotions. My head physically seemed to crack at times, like my brain was struggling to readjust to life without the antipsychotics in particular, and to date I’ve been completely unable to get anything worthwhile together again apart from doing gruelling physical work and undertaking excessive physical challenges as I’ve totally overcompensated for the drastic change in the way my brain has had to readapt to life without chemicals.
This has been what it has been like for the past 2 years, and like you Sally there is no way I’m going back on the stuff.
It has been incredibly difficult persevering with this course of action, and recently it became a lot harder as my partner finally had enough of my angry outbursts and has removed herself from me.
It is almost impossible to get anyone who hasn’t personally experienced this stuff to understand, and that includes psychiatrists, psychologists, G. P. ‘s, friends, relatives, et Al. The only people who really understand are the people who have been through it themselves which is why I am sharing my experience with you. It’s the same with my alcoholism. Only an alcoholic can truly understand and help another alcoholic.
Anyhow Sally I hope you get to read this. I empathise entirely with the struggle and it would be good to hear back from you. By email if you decide to write back, because I doubt I’ll remember how to access this forum again
Lots of love. Well done for persevering. Yours in empathy. Rob Coughlin.
towser55@outlook.com
Leaving Anhedonia says
I can’t thank you enough for speaking out about this all too common occurrence. I wholeheartedly believe I nearly lost my life because of a reaction to Olanzapine. Your experience sounds even worse than mine, which is absolutely appalling. I admire your tenacity and have an enormous respect for your optimism and courage in the face of so much suffering.
To anyone who is interested, hopefully this may help someone out there:
Here is my recovery story (4 years in progress)
I was on olanzapine for 5 years, and started gaining a lot of weight. I felt generally numb, but started getting some very bad reactions and had a lot of issues with flexibility, tension, cognition, and digestion. I didn’t know it at the time, but I was living as a single woman and the drug had made me extremely easy going and agreeable, numb. I basically went along with anything that men in my life wanted to do, became a doormat and found myself in exploitive and abusive relationships. Looking back I feel as though I had been drugged with some sort of truth serum or substance that made me do whatever people said. After a certain amount of time, I started vomiting so hard every couple of days that I started to puke up blood. I would wake up in the middle of the night around 2am, with the most horrid feeling in my stomach, I would throw up the strongest acid and bile I’ve ever tasted, with very little in my stomach. It would burn my nose and throat on the way up and I would choke for minutes at a time, alone and not knowing when I would get my next breathe, fearing I would lose consciousness and someone would find me there dead the next morning. After I went off, I felt as though my health got even worse. I was in constant pain, had terrible repetitive stress injuries everywhere in my body, and my immune system was so bad I had cellulitis on my legs from a spider bite. There became a feeling in my stomach like I was gut wrenchingly hungry yet full all at the same time for months to years afterwards. I felt like my body was shutting down and my concerns were not addressed by the doctors I went to, who seemed to insist that there was nothing wrong with me, even though I was feeling like I was going to pass out, I was in Chronic excruciating pain throughout my whole body and I could barely carry a grocery bag with 5 lbs one block at one point. I began hallucinating for the first time in my life, seeing with my eyes closed, demons and terrible sights whenever i closed my eyes. I thought I was going crazy and I realize that I hadn’t slept well at that point in years………I felt like my soul was dying, I forgot who I was and hadn’t been able to enjoy anything in many moons.
………I asked god to either take me now, or help me get better, because I couldn’t see my way out of that.. that way of being was completely unsustainable.
Eventually I got inspired, I couldn’t go on that way so I changed my lifestyle. I went on something called an elimination diet. I also cut out all alcohol. My stomach was so screwed at this point I couldn’t eat very many things without vomiting. So I started very simple. I cut all Dairy (except for my own fermented kefir) and wheat products out, all preservatives, I ate organic, ate a tonne of bone broth. I cut out all sugar from my diet except naturally occurring ones, and allowed myself a diabetic amount. I took CBD for the pain and swelling and it helped. I stopped taking all synthetic drugs, like benedryl, tylonel, aspirin, etc. I still vomited all the time for years after. It stopped only after around 3 years after going off.
I started running on the spot around 5 -10 times a day for 15 seconds at first, working my way up to 5 minutes eventually a year later. I would stretch constantly, sometimes 10 times a day for 15 minutes. I got a resistance band and did core training and resistance training, I realized the drug had compromised my posture so badly that my shoulders had gone forward and my collarbone was pinching the nerves that went down to my hands causing numbness and pain. I stopped being able to work. My life fell down like a stack of cards.
It took me 18 months of grueling exercise and 24/7 excruciating pain, vomiting, kidney pain, and taking a ton of supplements but I experienced my first day of pain free and I was amazed. I took a lot of magnesium and calcium at this point, it helped a lot. My friend who used to be a heroin addict told me it was common to have pain after going off drugs because your body forgot how to produce endorphins, but they come back. that’s also what causes the listless empty pit of grief in some people too.
I went to a well rated college of chinese traditional medicine in my city. They did acupuncture on me and it helped a lot, but it caused symptoms that weren’t pleasant sometimes. I also took the herbal teas they gave me and they worked to calm my nerves and soothe my stomach immediately. I feel like they saved my life.
I felt as though I was going backwards through my sickness at times. It was about as unpleasant to get out as it was getting into it. I had a lot of emotional trauma at this point from the mind fuckery of the doctors, my parents and the system in general basically gaslighting me, but I didn’t have time to address that because It felt I was fighting for my life.
I experienced Diabetes insipidous at a few points, (Which basically is like merlin in the crystal cave where he turns into an old man and he’s drinking a ton of water but he’s dying of thirst.. That was me for like, weeks at a time.) Around that time I started getting zaps in my tailbone, parts of my body and a huge stabbing pain on the side of my head at one point. It felt like pulling or pushing at times, and now I often feel pressure in my head. That hasn’t gone away yet and it’s been 4 years. They tell me it’s psychosomatic….. I hope it wasn’t a stroke! Balance was bad, up until a month ago I couldn’t close my eyes in the shower without getting dizzy.
I’m sensitive to cold, if I get cold i feel bad.. I get super sad sometimes still but it’s getting better.
I missed the feeling of myself for so long but am starting to feel myself now.
Some of the things in the past few years that really helped were:
Doing a high dose broken cell chlorella detox cleanse:
Take between 30-60 tablets of Broken Cell Chlorella,
Wait 1 hour
Eat a cup of cilantro. (Crazy enough this really made a huge difference! It stirred stuff up at first though so i felt like I was on olanzapine 2 years after I went off.). I did this for 30 days and felt better.
To deal with the Dull, faded feeling of life:
Microdosing Mushrooms, Niacin and lions mane mushroom at the same time.
Different mushroom extracts
Things that helped a ton:
Home made probiotic drinks ( Milk, Coconut, and water kefir)
Tons of B vitamin suppliments, B12 Shots,
Vitamin C in large doses
CBD and a tiny amount of THC
Magnesium!!! *( Can’t stress this one enough)
Vitamin D 5000iu
A good strong multivitamin
Iron supplimentation due to anemia
A really good greens shake with adaptogens in it.
Real celtic sea salt ( grey)
Iodine or thyroid blend of herbs/vitamins
Meditation/prayer
Swimming
Walking miles at a time at a beach with a chicken shwarma in one hand an a smoothie in another, Not talking to anyone because i was too scared of humans at that point.
Drinking good quality purified water. (THIS IS HUGE)
I had to train myself to breathe again…..Cause the drugs made me forget, this improved the pressure in my head and i regained my sense of smell.
Regulating my thermostat with Wim hof method and cold showers ( THIS WAS HUGE)
Doing Yoga to fix posture and regain body awareness brought bloodflow to my brain and helped cognition again.
progesterone only pill to combat horrible feelings due to hormonal imbalances (Im a female).
Family Constellation and somatic experiencing therapy
Somatic reintegration practices. (5 senses) And to deal with sexual trauma.
Hindu Tantric practices: awareness of the pairs of opposites (Ghunas) (to reorient the senses) THIS WAS HUGE!!
Finding some spiritual practice that is pleasurable and structured. Having discipline and realizing none of this was my fault…. I had to learn to love myself again.
Only now, do I feel myself leaving anhedonia for fits and spurts. The good days are becoming more numerous and with exercise and hope, the will to come back home to myself and heal. I realized that a lot of what I was experiencing was actually the grief of feeling like I had been permanently maimed, the blame and hatred I felt for the doctors who had done this to me was causing a great deal of damage to my body as well. For me to heal I had to accept that they didn’t know the harm they caused, and that evil exists in many forms but I do not have to let that infect me too
Dr. David Healy says
Olanzapine, Quetiapine (Seroquel) and Clozapine are closely related molecules and all three can be very difficult to get off. A recent comment on a Seroquel forum suggested that Spironolactone had helped one woman who was finding it impossible to stop get off quite easily – see comments linked to this blog post
Invisible Doctor
Cleo says
Hi everyone,
Did you manage to get off the antipsychotics. Did anyone experience psychosis coming back?