Back in Olanzapine Waters

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August 7, 2014 | 15 Comments

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  1. There is so much here I can relate to, I am also 59. The problems with the ears, temperature regulation, balance problems, general malaise, temper control.Mine was after stopping Seroxat.I have had the negativity and disbelief from specialists too. I feel exactly the same ‘ nearly invisible’ it’s so frustrating and upsetting.

  2. I am currently on .50mg risperdal & have mild myoclonic epilepsy after being on 1.5mg for 28 years. My GP is willing to let me try to reduce the dosage but feels we should leave well enough alone when I get down to .25mg. I’ve had a relatively easy time compared to Sally but most Dr’s just don’t know. My Dr calls all meds a “crap shoot”. He prefers a holistic approach. I’m 69 years old but don’t want my remaining years to be hell. God Bless Sally for her courage.

    • Thanks so much Marilyn. Patients here in the US are being told there’s no need to worry about taking these drugs for depression, because the doses are a lot lower than they give to people with schizophrenia (who usually are put on 4 – 8 mg of Risperdal, or 10 – 30 mg of Abilify).

      “Little baby doses” was my doctor’s theme-song … what harm could they possibly do? Plenty, it turns out! Best of luck getting off the drug — would love to hear how you’re doing a few months from now.

  3. Sally, this is brilliant. I love your determination to get back into life – and your calm intelligence in trying to understand the details of a horrible situation. I’m looking forward to that book …

    Some of your symptoms probably are after-effects of stroke. But irritability and quick temper, weird acuity of hearing, speeding up of words heard or read – none of those sound like stroke survivor’s problems. They do strike me as plausible long-term “rebound” effects from taking a dopamine suppressant drug for years, then going off it. Apparently this is one of the biggest obstacles in coming off antipsychotic drugs for people who actually have experienced psychosis. There can be “rebound” psychotic symptoms that last for several months, and most doctors assume this just shows the person needs to go back on the drugs.

    Maybe your mood and sensory problems are what “rebound psychosis” looks like in a person who has no tendency or potential for psychotic experiences? I’ve always heard that in active psychosis one feels assaulted by sensory inputs, sounds especially – unable to screen any of it out. And a newfound tendency to lose your temper at those around you – maybe that’s the rough equivalent of “paranoia” for someone who’s never been psychotic. Just a guess.

    What’s really interesting: in spite of all this misery, one thing you DON’T seem to have is “rebound depression”, which might make sense in someone getting off a drug that had SOME virtues as an antidepressant. Pushing these drugs as long-term solutions to psychosis is bad enough. Pushing them as “antidepressants” is a crime. I’ve been offered them over and over in recent years – either as alternative antidepressants, or as the magic glue that will somehow make the antidepressants “work.” I plan to keep on saying no thanks!

    • I had similar sensory distortions from baclofen. Music was painful to listen to and I cannot even describe how it was distorted. While I was under the effects of the drug, it was hard to tell if the distortions were due to MS or not, and now that I’m completely free of the drug’s effects, I know that the distortions were drug induced. Now that I’m free, everything doesn’t take like dust or salt either.

  4. Dearest Sally

    It’s squalid, isn’t it?

    Remember Watership Down. It gave me an idea.

    I was just wondering how you are going to pitch your story. Will it be a medical book, a patient’s book or a very emotional and true story of a woman’s journey…

    I am asking this because as I was disillusioned about Paroxetine, and, as I cuddled my doctor’s gorgeous dogs, I came out with “I think I might write a book about Seroxat”.
    She looked at me and thought about it.
    Her lined face, from years of personal hardship, alcoholic abusive relationships, and, so, on, she said “it would be better if you wrote about something more cheerful.”

    I never forgot that moment. As I never forgot the moment when I was in her bedroom as a guest, and, as I sipped my Paroxetine liquid, after a disastrous event from cold turkey the year before, I looked in the bedroom mirror and saw her face staring at me.
    Her kitchen was adjacent to her guest bedroom.

    A chilling moment.

    So, to my point.

    My story will be filled with, not so much drug abuse, as the psychological mind set of the persons surrounding me.
    Suddenly, out of nowhere, my life was filled with people who I did not want in my life, and, somehow, my world of friends and laughter, dissipated into a cavern of persons who intruded and pushed them all away.

    I want to write a thriller with lies, treachery, hubris, incompetence, inadequacy and why doctors, with passionate hobbies, can take their mind off the ball.

    I was in my village for sixteen years which was before either of two doctors arrived on the scene.

    The Indian doctor was passionate about photography. He won prizes. His doctor’s house, was tacked on to the surgery. It was filled with photographic equipment. It smelled of Bhuna.

    The new lady doctor was passionate about dogs which was why we spent more time talking about dogs, then we did about Paroxetine and those horrors.

    The final owner, was passionate about money, which is why he had a three year sabbatical in Novia Scotia to fleece Canadians.
    He came back and called an extra ordinary general meeting in the village hall to say his practice was almost bankrupt.

    My lady doctor died in 2011 from lung cancer. She worked right up until the end.
    Her obituary said she had a wicked sense of humour. Written by a patient. She had no friends.

    Anyway, that is the brief history of those people surrounding me.

    I would like a review for my book to say “a rollicking fast-paced read. She had imagination to create this story out of her village surgery and it is very funny. It is not only local, it brings in international espionage. If it wasn’t so funny, you could almost believe it was true.”

    Sally, what would you like your reviewer to say about your book?

    I am still thinking of titles.

    Island hopping..the curse of the bunnies..still thinking.

    Have you thought of a title for your book?

    Love Annie

  5. Hello to everyone who has posted such thoughtful, warm comments. I empathise very strongly with those like Ruth who still struggle with ongoing legacy symptoms – there are lots of us. I am hopeful (sometimes) that 50 years hence our story will be told in the textbooks – possibly 100 years is more realistic? And yes – it is interesting that I have never had “rebound depression”! But, looking back, I hadn’t been truly depressed for many years – just that I couldn’t get off the damn stuff. I have never understood the notion of “adjunctive” medication in any case….why would a medicine need another medicine to make it work?

    The book: half way through a second draft. Working title – Olanzapine Nights – but it’s very unlikely a publisher will like that, as olanzapine is not well known enough to grab sales. And I am wrestling with achieving a style that is wry and funny as well as gut wrenching. Also with avoiding the pigeon hole of “misery memoir”. Entirely possible that I won’t..! Very best wishes to you all – Sally

  6. Hi, I wanted to comment. I like the way you write. We have a few things in common.

    I have horrible balance problems as well as many other strange sensations/perceptions I deal with off and on daily.

    At age 34 (2006) I was prescribed Lexapro and experienced a severe adverse reaction to it. I believe I experienced serotonin syndrome. I made a Youtube video about it because it was so terrible.

    It is long, you don’t have to watch it. But it is here as reference:

    https://www.youtube.com/watch?v=3_4gLZrqlik

    At age 38 (2010), after 3.5 years of recovery from the adverse reaction, I awoke to find I was paralyzed on my entire left side. I had suffered an ischemic stroke. MRI later showed that stroke as well as a small remote infarct in my cerebellum. Again, knocked back down to HELL.

    No cause for strokes was found. I had no risk factors. I can only suspect the SSRI damage or chronic insomnia I have suffered from for half of my life contributed somehow.

    I also have had the strangest migraines since then which in some cases, have left my right hand, tongue and lip completely devoid of feeling temporarily. The doctors at the hospital will not order an MRI for those episodes (which have left me in worse shape than the stroke) so I don’t know if I had another stroke or not. I am going to go out on a limb and say it’s probable.

    So I am 42 now, disabled and in bad shape physically/emotionally. I relate to a lot of what you have written online. I used to be a runner but now I can barely go out and walk. I have strange debilitating arrhythmia’s (which just cropped up this past year). Compound that with a vertigo-like condition and I think I am turning agoraphobic.

    Let me know if there is any way I might contribute. I want to help raise awareness.

  7. Hello Tony

    Thank you for sharing your video, for making it and describing so honestly most of what most of us have had to contend with.

    As you say. Don’t give up. Things do get better. It takes a long, long time as you adjust to an alien toxin messing about with the delicate balance that we all have.

    We don’t give up as it is not in our nature but wouldn’t it be nice if our descriptions of such a long list of reactions were taken seriously. Although, I take your point, you have to experience it to understand it. This seems to be the biggest hurdle

    Paroxetine was almost identical to Lexapro the way you tell it and it is a very lonely place when you have to deal with all this on your own.

    Thank you.
    The world is a less lonely place with people like you in it.

    Wishing you well and further steps to recovery and I am sorry that you had to go through all this but have the strength of character and dignity to put it over so well.

    I am sure you have helped a lot of people wade through all the confusion of this debilitating syndrome which was so unexpected and so frightening when it affects literally everything that we trust to work as clockwork.

    We are extremely aware of what goes on in our own bodies and fighting this humungous assault on us has certainly been something, at one time, I was not sure how I was going to get through. As you say, walking ten miles got a lot of it out. But, then it comes back.

    Your waves and windows was the most perfect description.

    If anyone, can get her book published, I am sure it is Sally.
    So much luck with that and I hope you keep us posted as to how it goes.

    and, I like your title…it is subtle but might lead to people picking it up just to see what the word Olanzapine means, even know it alls, don’t know it alls, and, it might make you laugh that over on 1BOM, someone googled it and it came up with Ioa zapping.. I thought it was funny anyway.

    Joseph Arpaia, MD

    August 13, 2014 | 10:55 PM

    Oops did not notice my spell checker turned olanzapine into loa zapping. And who said AI systems lacked a sense of humor

    Mickey

    August 13, 2014 | 11:43 PM

    I kind of like “loa zapping”…

  8. loa zapping is great – maybe a better title for the book? Thanks for the posts – what a terrible story, Tony. As to how to raise awareness, I’m not at all sure. Maybe people have ideas? I have debated a website/blog etc but not sure I have the necessary energy or skills. I know that when I was trying to find out about olanzapine withdrawal/discontinuation/aftermath in 2012 I tried every which way to find something online: every conceivable combination of words (olanzapine/Zyprexa/antipsychotic/atypical.. etc etc) and there was nothing. I even got conspiracy-minded and thought Eli Lilly must be burying information…! Or I was the only person with those experiences. There is much more now, but it would be very good to think of a way of really making an impact. Best wishes again – Sally

    • Hi there Sally Matt here from the states, Texas. I am so glad I found you and feel at least that I have found where are or most of my problems came from. The start of which were all started with a tooth ache and of coarse loratab. Sorry for the spelling, never was worth a shit, but cont. to get worse. I so feel you on so many levels. Anyway just wanted to say thanks and I am so greatful I found ya. I took the damn olanzapine for only 1 month and health issues started 2 weeks into it so I stopped and the issues only continue to this point now I have swollen fingers that of course the dr. wants to treat with antibiotics and stariods. Well hope the book comes, I will try to get my shit together if possible to cont. following ya. Matt and best wishs

  9. Hi Sally,

    I am Laura from Romania.I am 32 ,I`ve been on Zyprexa for 6 years and I am off it for almost 4 months now.
    I have many symptoms like yours,pain all over my body ((peripheral neuropathy/fibromyalgia)) ,especially in my lower feet (after short distance walks), severe insomnia,vulvodynia and the list goes on and on.
    My main question is how can you get some sleep at night? I`ve tried a lot of natural sleep aids but with very little results .Also please let me know if if the generally spread pain will eventually go away in time by it self … Or should I take painkillers or go with the natural approach…yoga,short walks,meditation,healthy food.
    Anyone with the same problems like mine please please e-mail me at lodmini@yahoo.it.Thank you in advance,any help or feedback would be very helpful!

    • Hi Aura – I’m so sorry, I’ve only just picked up this, as I’m not all that great at keeping regular checks on new posts.

      I feel very much for you – it sounds as though your experience is close to mine in many ways. As for your main question: sleep. That is a major problem. I was lucky in that I was given a benzodiazapine, clonazepam, because the neurological symptoms suggested I might have epilepsy at one point. It seems absurd for me to take yet another psychotropic medication, having got off olanzapine, but I took the clonazepam at night and it helped a bit. You may well not want to go down that route however.

      The good news is that after about 18 months, sleep improved. The nightmares and tachycardia very gradually subsided. I don’t sleep very well, but I do get a reasonable number of hours.

      The painful neuropathy is also gradually improving. I get much less severe tingling in my hands and wrists – and feet too. It does feel as though my body is very slowly repairing – and as you are younger than me (I’m nearly 60) then you may recover more quickly…

      Practical steps I took: I didn’t take extra vitamins because I had so many blood tests at one stage I was happy that my levels were OK. I did knock sugar and caffeine right down – mainly because too much made my heart pound. I also tried to get as much walking in as possible: sometimes when I felt (and sometimes feel) really awful, a short walk, as far and as slowly as you can manage, seems to help.

      I developed my own list of remedies, starting with the fresh air, then a couple of paracetamol, a warm bath, writing an email (distracting my brain is quite effective). Or a phone call to a friend. If none of those worked I had a fairly stiff brandy (!) – that is very effective, although I try to only do that once a day. I had a suggestion that marijuana might be helpful, but it made me too woozy and didn’t really lessen the pain. Similarly with tramadol and co-codamol – I got the unpleasant side effects and no real pain relief – hence sticking with a couple of paracetamol every so often. (Their effect is probably placebo but if they help – so what!)

      I really hope that these suggestions help, but I suspect everything is very individual (like brains..). You may have to wait a horribly long time for all the acute symptoms to subside – but I would be hopeful that they will in the end. Very best wishes

  10. Hi

    My name is Cengiz and I am writing to you from Denmark and I have read your story on rxisk.org. About withdrawal from zyprexa . I Am therefore writing to you because I need hope and wondering how far you have come with the tapering

    I too am trying to get of the zyprexa I have been taking it for 11 months now Currently I am on a dosage of 5 mg. I started with 5 mg but upped my dose to 15 mg but that was only for 3 months. Now I’m down to 5 mg again. Right now I don’t know if I am experiencing withdrawal symptoms. I freeze a lot, fever like symptoms, insomnia, stomach cramps etc etc just spoke with my doctor today and we agreed to go down to 4,3 mg instead

    I am so afraid of this medication because I know it is a dangerous drug. I am afraid that It has caused brain damage.

    I know that you are a doctor and cant advise about the withdrawal symptoms and but it would be nice to speak with someone who has been themselves

    I have tried to come of the drug 6 times but unsuccessful maybe because I did it to fast. This time I will do it on a slower pace. Maybe we are talking months or years. This drug has completely ruined my life. It was given to me because of anxiety. It is very hard coming of this drug

    I hope you can answer back because I desperately need to someone who has been there and because I need hope

    Best regards
    Cengiz Savran

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