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Gabapentin sudden death

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wilma60
wilma60

our daughter was prescribed Gabapentin earlier this year for the Peripheral Neuropathy pain. She was 5feet talk and weighed 11 stone. The side effects were horrific. Induced fits up to 25 daily. Rash. Behaviour changes. Hallucinations. Panic attacks and weight gain. She gained one stone per month. This was not diet related. She became unable to walk more than a few steps. They put her on 4800 milligrams daily. She was drugged, developed jerky movements, and was 20 stone within 9 months. All tests were normal she died suddenly in her sleep last month. Despite pleas for help she was ignored. All health professionals and six pharmacists are so shocked at the level she was prescribed we are seeking to stop anyone else from suffering the way she did this last year. We are heartbroken and don't know how we will cope with such an unnecessary loss.

2 likes, 67 replies

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  • janet68145
    janet68145 wilma60

    Posted

    My thoughts are with you at this very sad time, Anything I say sadly wont be able to bring your daughter back, however I see how important this is for you. In my limited opinion, that is a large amount, and if your daughter was suffering from P. Neuropathy pain, the amount of Gabapentin should have started at a low dose, then increased if the drug suited. Obviously this was too much for your daughter. It should have been reduced down as their were horrendous side effects. Many Blessings to you Wilma, and your family.
  • wilma60
    wilma60

    Posted

    Thank you for your kind wishes. 
  • Holly1974
    Holly1974 wilma60

    Posted

    I am so sorry to hear about your loss and the terrible side effects end end of life your daughter had to endure. I used to take 1800mg and was told in most cases that it was the highest effective dose, and to go any higher there was limited increase in efficacy but a much larger increase in side effects, so certainly in UK may clinicians do not go above 1800mg a day for this reason. Once I was settled on it and over the initial side effects I found it very effective, but then a year down the line started having problems with my memory and language centre of my brain, which added to my depression already had from my back pain and having to stop working. The thing was I have a 2i in Pharmacology and was a medical rep for 14 years until my lower back problems forced me to retire on ill health. but I am quite knowledgeable re. things medical., and what i don't know I can look up on net and find my way through the fiction to the facts. Syuffiuce to say after 5 years on this drug and it's competitior pregabalin, no better in my opinion, I made a decision to wean myself off it gradually, just like when you start it you must increase the sode gradually each week under supervision of your clinician. It is helpful to some people, but I am so glad I am off it, both of them. I still live on slow release morhine and am still not great re mobility and apin, but I too could not stand the brain fog, forgetting what I was doing all the time, and feeling like I had early onset Alzheimer's disease. These drugs work on GABA receptors in the brain, so no wonder have so many potential side effects. They are not even fully understood. I am sorry for your loss and pain. God Bless and I am so sorry to hear your story. I never take the medical proffession  as gospel, for a few good reasons, they are human and can make mistakes like anyone else and I have seen a few in my time. Drs should listen up about the suffring that these meds can cause, I find they largely ignore patients reporting side effects on gabapention and pregabalin , in Uk at least,
  • marshall71
    marshall71 wilma60

    Posted

    Sorry I don't know what too say my prayers and condolences for your loss

    I take this drug for the same thing PN and I'm putting weight on been on it for 2 months now and the weight is currently going up Iam eating less I can't walk very much as the pain in my legs and feet is bad I take 9 pills a day plus I use cream for my feet which helps.

    I hope your local MP is involved with the sudden death plus the BMA too

    Terrible post too read at this time of year

    Paul

    • Holly1974
      Holly1974 marshall71

      Posted

      yes, would be a good thing to have this properly recorded via the Yellow Card system if it still exists in the same capacity and the BMA. I have seen too many wrong doses given out in my time, in my line of work but also as a patient and as a parent. No wonder most of medical professional don't like me much, I ask too many questions. be careful if not agreeing with you, too many times we are told by the drs that it will be fine, they are not the ones living with the side effects. I personally do not know if my short term memory will come back, it's def, impaired and I have been off these drugs for 8 months now. It can be done, yes I did suffer more pain every time I dropped the dose down but in the end it stabilised, and now I am in same level of nerve pain as I had on full dose of drug, as I believe what some of medical profession believe and that is over time your body adapts to the dose, a bit like diazepam for example,, receptor numbers adapt and it would take an inc. in dose to achieve same effect due to desensitization. This is long term, not short term obviously, but anywhere from 1/2 years into treatment. I know it works well for some people but for my liking there are too many people with these side effects and not enough being done about it !!!! Weight problems are a problem with these meds, straangely enough though I went the other way and was nearly anorexic. But most people exoerience weight gain from what I have read, There are not many meds effective for nerve pain, this is the problem. Some drs think pregabalin has a cleaner side effect profile ( it costs them more though !!)...other than that there is TCAD Amityptiline which used at low doses treats nerve pain in some, although I got flu-like side effects and I had to stop that. Good luck.
    • marshall71
      marshall71 Holly1974

      Posted

      More people need to be like you holly push and ask questions about meds they take you need too be firm and hard with the NHS now I saw 6 gps for a MRI scan took a year for one seen 7 specialists 3 said I had periphery neurophay the others had no clue what was going on with me
    • holly89158
      holly89158 Holly1974

      Posted

      I am so very sorry for your loss.  There are no word to comfort you in the loss of your precious daughter at such a young age - who knows what she may have accomplished in this world, had lived. 

      That being said, thank you for your post regarding Gabapentin.  My physician recently put me on the drug to treat pain related to P.Neuropathy.  It is helping, in that regar, to some degree; however I do not like the side effects.  I thought it was just me, being fussy and complaining and as some people said "I just don't want to get well:"

      I live in the USA, things probably work differently in the UK - but - you should make your daughters case public...not just in these kinds of posts.  Do whatever it takes to bring the situation - and the doctor - to public attention:  start a petition, gather signatures, demanding that doctors listen to patients and take their complaints and questions seriously.....not just assume that because they have a medical degree and the patient doesn't, that the doctor is always right!  Name the petition after your daughter....a life that should not have been taken by medication and doctor's failure to listen.  All too often the general public take a doctor's advice and prescriptions as being what is right.  Doctors are human, they make mistakes.  The most deadly mistake is NOT listening to the concerns and complaints of their patients. 

      I sincerely hope that time will heal the wound of the loss of your daughter, but she must not have died in vain.  Do something about it. 

      Start a petition, get signatures, get on a talk show and tell your daughter's story.  In her name, others might be spared the same fate.

      God bless.

       

  • wilma60
    wilma60

    Posted

    Thank you for kind words. She was having up to 25 fits daily after she started taking this medication. Her dose was increased slowly to 4800 milligrams daily, slowly. The side effects outweighed any benefit. She put on one stone per month and was 20 stone when she passed away in her sleep. The dosage has never been heard of
    • marshall71
      marshall71 wilma60

      Posted

      Did your daughter have a update with her GP every month to monitor her side effects and drug intake? I see mine each month any problems new I address with him any concerns I have
    • Holly1974
      Holly1974 wilma60

      Posted

      I feel for you los, you must as soon as you have the strength follow this up. It's a sad fect that so many drs are in some sort of denial over the side effects of these medications, but this dose is incredible !! Like I say here is UK 1800mg is considered highest effective dose before side effects far outweigh any benefit. Some people do go up to 3600mg, but very rare. Most people are on 1800mg or less, usually split into 3 doses over the day. I took it for nreve pain assoc'd with having 3 prolased discs and other probvlems with my lower spine, which I still have. It was watching the film ''Still Alice'', with EAD symptoms so like what I was experiencing that I walked out and said I have been thinking about stopping it for months, now I am doing it. The drs know better than to argue with me, since they ignored me when I told them of the side effects it was having on my cognitive function, poor memory and language part of my brain was all in a muddle, all the time. It made me a recluse, whereas I had prev. been outgoing, chatty, etc.....I was eventually listened to and she admits these side effects are real now, shame they didn't believe me 4 years earlier when I first started to experience them. I'd never be able pass an exam to retrain in the future, if my back allowed, I'm still only 41, I cannot return to my old profession, these meds have a lot to answer for.
    • Holly1974
      Holly1974 marshall71

      Posted

      I was in contact with the Pain Clinic at the hospital where it was initiated, I could ring up and speak to the nurse and on occasion the consultant did ring me back when I initially started on it, as many family drs are not that switched on with these meds. It is after all not the primary license they have, peripheral nerve pain was a second license that came along later. It was the same drs at the same Pain Clinic though who failed to properly acknowledge me when I complained about my feeling my memory function was poorer than ever before. I can get half way through a sentence and forget totolly what I am talking about.....but way way more than is normal for anyone unless maybe you are 100 yrs old !! I think it is impt to know your own body, make a note of side effects and maybe even keep a diary when they are v bad, and use this to go back to your dr with. This site is good, I had not found it with this amount of info on when I started having problems. I know people persoanlly who are the other side of 60 yrs od, that are convinced they have Alzheimers - and have told their dr !, now that is pretty sad !!
    • marshall71
      marshall71 Holly1974

      Posted

      Yes I went too the pain clinic saw a good doctor who was at last switched on about pain and how too deal with it I've put a lot of weight on and I

      Mean a lot last count I was 21 stone at 6ft 2 I'm getting big I was big before from weightlifting heard about Alzheimer's with this drug which too me is a worry as how long can i stay on it saw on dvla site if you have peripheral neuropathy you must tell them and you can't drive anymore I use too drive for a living so that's a big stress for me

    • Holly1974
      Holly1974 marshall71

      Posted

      I have heard of people say that they have had a parent with the begginnings of Alzhemiers Disease and that this drug has speeded up the progression. I had no such symptoms until about a year into treatment, some days better than others now, only time will tell if and what proprtion of my memory will come back. Considering I have a 2i in Pharmacology it's pretty unnerving to feel like your brain is losing it's function so fast and I was only late 30s then. I have heard about the weight gain issue with a lot of people, but sadly I havent heard of a solution,
    • marshall71
      marshall71 Holly1974

      Posted

      I read everything on the internet about drugs Iam taking and the long term side effects of them and the risks of memory loss after years of being on gababpentin so many people have red flag memory problems which of course the gps never tell you at all my speech has charged more slurring
    • wanganui
      wanganui Holly1974

      Posted

      So Holly what are you doing re pain now that you are coming off gabapentin?I have decided having read your story and done a lot of research not to go on gabapentin.I am going to try and take an holistic approach to this facial pain......best of luck!
    • Holly1974
      Holly1974 wanganui

      Posted

      A very late relpy I am afraid, I have not been able to find anything that suits me. Gabapentin and pregabalin were both effective in the beginning, when I decided due to memory side effects I was going to come off I tapered the dose down gradually every 2 weeks, so it took a few month, and every time I dropped the dose I suffered more pain than I was already in, but now I have been clear of both of these compounds for 10 months and I feel they had ceased to be effective anymore, I am no worse off now than I was taking the meds in terms of pain. If in a lot of pain I try and use techniques I learned ona Mindfulness Course. my back goes into spasm so much these days and manya  night and most mornings and need my husband to get me out of bed that I don't think I could bare the pain if I hadn't gone on the 8 week Mindfulness course I attended in UK - part of Breathworks and specifically at people in chronic pain.....I have had my slow release morphine levels go up, but that has little effect on pure nerve pain. The reason for that is that I was sleeping so poor as my hips were so painful from my lower back problem. The only thing I do know for sure is that I do not trust the drs when it comes to gabapentin, it was up to them I would still be taking it, and my meory and cognition have suffered enough. Try anything else first. I noticed the longer term side effects start creeping on after 12 month on this med. Good look, nerve pain is awful, but so is losing your mind.
    • marshall71
      marshall71 Holly1974

      Posted

      Holly

      Have you been to a pain clinic I hope so mine was helpful indeed I'm on gabapentin 9x3 a day slow release tramadol 2 a day over 12 hours does it all help ? No not really still in huge pain had a EMG last week more pain after It 2 weeks time having a ESA face to face interview oh I can't wait been waiting since Dec 14 for one I don't know what the future holds for me DLA say I can't drive with PN 3 doctors have said I have it

    • Holly1974
      Holly1974 marshall71

      Posted

      Hi Marshall,

      Yes, I have in fact attended 3 pain clinics - it was the second of these that put me on gabapentin ! I have most recently been to see about a neuromodulator device implanted in my spine, but seemingly I am not a great candidate for that being successful either - that is in Leeds, UK. Just so you know, my memory is not better since coming off it, in fact the dr told me not to expect great things, since we are all getting older.....I was 40 when she said that ! I am 41 now ! I have tried tramadol but over the last 9 years or so I have started tolerating amny of the pain killers including tramadol, then tramacet ( has paracetamol in it and dose if slightly higher ), ended up on slow release morphine tablets from GPs as nothing else was working anymore. They try to keep me to lowest dose, but when I have flare up I have a bottle of oromorph (10mg/5ml) liquid morphine, that is 4 hour window, quicker acting. Better to use slow release, takes a few weeks to reach steady state levels and get a more even plateau..........I too face to DWP soon, my form is in, as they attempt to swap me from DLA to PIP.....I would work if I could, I worked hard for a really good career in pharma industry, had to give it all up 9 years ago, def. not in my plan !! I wait to see......I have been warned though, try your local Citizen's Advice bureau for help with anything like this......you might find you need it ! They can direct you to other people in other departments if they see fit too.

    • marshall71
      marshall71 Holly1974

      Posted

      Have a look at blacktranglecampaginorg all one word great tips on do and don't's you need to be switched on when you have it they will trick you and make you slip up at any point .

      I saw my MRI scan for my back lower disc is flat and gone it's not related to my numbeness and tingling in feet legs hands I have one kidney so it's a worry with all the drugs I'm on the dangers of long term use

      I use a tens for the pain does help full power everytime I was working for myself and loving it but that's all gone

      44 now and feel my life is gone forever all to long forward is getting worse I use a stick to walk with

      I've seen 7 Gp's same number specialist in one year also forgot to say awful pain in going in my si joint in hip.

      Seems the drugs are not giving any pain free at all which is horrible to hear from you.

      I don't know know about you but this for me is not living at all I feel empty

    • marshall71
      marshall71 cathy_71536

      Posted

      Had physio and hydro she said it was not that 3 Gp's and specailst said it is peripheral neuropathy EMG in hands Came back with CTS in both hands
    • Holly1974
      Holly1974 marshall71

      Posted

      Hi there,

      I knwo exactly what you mean, I hit rock bottom a few years ago, and have basically been on a high dose of SSRI antidepressant since. I didn't want to, when I know that essentially it's the pain that leads to poor sleep, ittitability, hitting speed bumps in my marriage ( 19 years married now ), and being unable to plan to do anything, the seconf I overdo it I pay for it and it's like living in sheer hell. That still stands - but they help me to try and get on with living as much as I can. Probably without my two teens, 14 and 17, I wouldn't be here now, as it was only for them I went and got help after hitting rock bottom, that and my husband could bare it no longer. I / we have had to make many adjustments, I still hate having stomething which on the outside appears ok and going through hell to get anything off DWP, who do their best to make you feel worthless. I am 41, I put both my children into private daycare at 7 month old to return to work full time to keep my job and further my career. This being stuk at home in apin isn't a great existence I know !! I emply a few things to try and keep me sane that are not medication  - I have a back lit Kindle which if I am awake in bed in pain I read on a low light, nothing worse than listening to everyone else inc'g the dog sleep, I went on Breatworks 8 week Mindfulness course for people in chronic pain, it was very good (UK), and I found a hobby ( never had time for them before so didn't have one )....I do some photography, just for me, but I post on Flickr too, that in itself focuses the mind and makes you live ''in the moment''. I have had the trigger point steroid injections, in my lower spine and SI joints ( mine are kaput too )...I have even had radiofrequency ablation - where they destroy the nerve - doesn't last forever, and was v painful so I would not have done again, although it did work to a degree. That was all through the pain clinic. Orthopaedic surgeons and pain clinic drs at hospital have far more knowledge than any GP ! 

    • marshall71
      marshall71 Holly1974

      Posted

      Not married anymore only lasted a year that's in the past and gone hobbies are a must reading books also getting into doing jigsaws never done any before they do take a while can't sit for long periods still doing one from Christmas on the table Pets are a big help dog makes me so happy when I'm down and in pain.

      Not had any trouble yet with DWP but not had my face to face they are lowlife no need for a interview just to tick boxes your doctor and specialist are trained to understand your body and what treatment drugs and if your fit for work it's a exercise by the gov to save money IDS is a nasty man sorry to rant on a Sunday but it make my blood pressure go sky high.

      Regards

      Paul

    • Holly1974
      Holly1974 marshall71

      Posted

      I know where you are coming from....I have a dog too, a schnauzer, love her to bits and she is such good company when husband at work and kids at college. I always have a novel on the go now, take it to hospital appointments ..everywhere I go. They sent me to see a psychologist, to discuss my feelings of worthlesess etc....lets see I have a degree in pharmacology, had a high powered job in pharma industry and a family to raise, and now stuck at home in pain, no progress, except for having given my faith to drs and been given drugs that have affected my memory in long term. Apparently everyone pretty much who gets assessed for PIP now will get an examination, could be a nurse, physio, not neccesarily a dr, and can make you travel hours to get there.....I had a local advisor who has helped me before come out to help me with the form, they are trying to catch you out at every turn. The one thing I really resent is that who in their right mind would think I would imagine this, I try and stick to a couple of GPs in my practice, and one dr at pain clinic, to keep it simple. I used to think I was a tough cookie, but to be honest, I now wonder what the hell I bothered for....all the studying at Uni, working 50/60 hours a week for my job and then trying to be a good mother too...and a wife.....it's a tall order.....but I got on with it and thrived off the buzz of it all, perhaps that's why I am depressed. I come on here because I have tried so many things I can at least give my opinion on success rates etc and maybe help the odd person,....I have to stay sane for my kids...my daughter is doing her A levels and wants to go into Law, and my son is an RAF cadet and wants to be a pilot. I often feel trapped between my health and pain and al the things I meant to do to keep them on track...I know for sure if I did anyhting silly it would change their lives forever, and it's the only thing that's stopped me on a few occasions. 
    • marshall71
      marshall71 Holly1974

      Posted

      A career in the airforce is good father was in for 34 years came out with a BEM wanted to be a pilot but his parents told he not too so he went on too be a air frame fitter we spent 11 years at RAF lyneham wonderful childhood there growing up

      The pain part is very hard too deal with being at home all day not had a car since 2014 I don't know if I can drive anymore with PN Dvla say no on the website

      The drugs I'm on have made me feel strange with odd mood swings and big weight increase.

      I went too college for 2 years then in 2008 started up my own business

    • Holly1974
      Holly1974 marshall71

      Posted

      He is an air cadet now and has been for last 18 months and has flown, been on number of camps, loves it and brings out the best in him, so he wants to try to join after A levels. I do still drive - but only when on base dose on slow release morphine that I take twice a day, if I top up with extra painkillers I have a car but don't drive it...I live in a rural village, and would be v isolated without a car at all. 

      I actually lost weight, gabapentin made me almost anorexic, although I know most people put on weight....obv. has an action on appetite part of brain ! The problems it has caused with my memory mean I would struggle to study now, I find it very hard to learn new skills and recall in dreadful, I often get half way through a sentence and forget what I am talking about....makes me not want to talk to people some days beyond my own 4 walls as I find it embarassing....never thought I would be in this position, but I bet that's the same for many of us !!

    • marshall71
      marshall71 Holly1974

      Posted

      Long term memory lose is a side effect done plenty of reading about it also speech can be effected too I suffer from both.

      Amitriptyline made me put on weight and crave food good for sleep and nothing else woke up everyday with a hangover the dose was between 30-40 per night for a year

    • marshall71
      marshall71 Holly1974

      Posted

      Got my EMG test back on Saturday and normal I don't know what's going on the doctors seems to guess what's wrong and put me on gabapentin large doses I have chronic lower back pain and nobody seems to want to do anything with me I've really had enough of this to a point
    • wilma60
      wilma60 marshall71

      Posted

      Have you had a long lasting epidural.

      i found it gave relief

    • marshall71
      marshall71 wilma60

      Posted

      No wilma only physio which was a waste of my time and paying for a taxi I feel so let down by it all
    • wilma60
      wilma60 marshall71

      Posted

      They have to try one thing at a time depending what the cause of the pain 
    • marshall71
      marshall71 wilma60

      Posted

      Pain in si joint which only the physio said I've told every GP and specialist of the pain and no one had listened to me at all
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