Has anyone else tried to get off Gabapentin? - Pain Concern

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Has anyone else tried to get off Gabapentin?

lifexperience profile image
20 Replies

My GP gave me Gabapentin for nerve pain. I have taken it for a couple off months but have put on 9 pounds, had insomnia and depression and mood changes. I read online that these are side effects of this drug. So I stopped taking it. It had not helped with pain in the first place. I seem to be battling withdrawal effects now. I had no idea that this drug could cause so much trouble.

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lifexperience
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20 Replies

Hi I was on gabapentin for years with increasing dosage until I was on maximum dose.Wasnt very effective so changed to pregablin.This worked so much better for nerve pain(mine was sciatica).I put on a bit of weight with gabapentin nut with pregablin the fluid retention was horrendous so after 6 momths I stoppef taking it but got to say for me it wss the best ever med for nerve pain.I changef from gabapentin to pregablin without needing to wean off gabapentin first, My GP said didn't need to as similar kind of meds bit pregablin.stronger version. When I came off pregablin I went to half dose for 2 werks, then quarter for 2 werks then stopped, no withdrawal symptoms except the pain was back.I have never gound amother med to match pregablin for sciatica including morphine, The thinh I find the strangest is the gluid retention has never gone away after 18 months off it so I tried back on for a week recently and swelled up even more so seems sadly its a no no for me.Whete is your nerve pain? What withdrawals have you had? Hope yoi feel better soon x

lifexperience profile image
lifexperience in reply to

Worse depression and insomnia. My third day of them and I have lost a pound. I suffer from osteoarthritis and get trapped nerves in my neck. I also have Fibromaglia. I am diretics and until I started checking, I did not know this drug also causes it. I have read that they are not suitable for everyone. I am feeling brighter this morning. Thank you for your reply.

Bananas5 profile image
Bananas5

NEVER just stop taking this drug. You must reduce the dose over a period of time slowly. Several weeks.

For many who can't take it - Pregabilin it's sister is a good alternative.

Like all strong prescription drugs you must ask your GP or pain clinic.

Pat x

lifexperience profile image
lifexperience in reply to Bananas5

I am afraid I didn't have the option. It currently takes a month to see a GP. I do not have a pain clinic. I am afraid when you are so low staying on a drug is not possible. And I do not have lower strength tablets to take.

Bananas5 profile image
Bananas5 in reply to lifexperience

Sorry I didnt mean to sound bossy! If you have only been on them for a couple of months - surely you started at a low dose and worked up? If someone started you ar a hugh dose then they should be shot. It is a dangerous drug if used incorrectly and this is why you have had withdrawal effects. Even cutting them in half is beter than nothing.

Why ever do you have to wait a month to se a GP> This all sounds horrible for you and you certainly should be treated better than this. What dose did tou start on and what dose did you stop taking them?

Just want to help and stop these practioners who do not understand hese pain drugs.

I don't kow uf you know but they are primaroty used fr the treatment of epilepsy bu stopping messages getting to the brain.

In friendship

Pat x

Poppy_Ann profile image
Poppy_Ann

Hi, I am on pregabalin along with 6 other different pain killers, I use to be on Gabapentin but the side effects were so bad I spent 3 months in bed as my pain was so bad, which was the reason for changing onto pregabalin but now after 2 years on it I have gone from 12 stone 6 pounds to 15 stone 10 pounds(79 Kg to 100 Kg) which is causing so much pain I am close to house bound I reduced my food intake from around 2000 calories down to around 800-100 calories and still I cannot loose any weight I started the Pregabalin as my other meds were not managing my pain I damaged my back many years ago in an accident in the army and as years have passed I have slowly got worse I think I may have to return to my doctor and try to get the Gabapentin stopped as the weight is causing me more pain than the gabapentin is removing at least I can just stop taking them as the other pain killers I take will stop any withdrawal symptoms I would get which is something I do not want to go through as I had been that route before whilst was in St Martin and ran out of my main tablets (my repeat prescription went missing in the post) in the end I went to a local doctor and asked him to prescribe them for me he told me he could not give me the strength I was on as it was well above the rules they had he tried insisting that I must have been getting them from the internet I showed him how I got them from UK and that they were made in UK at Cambridge pharmaceuticals in the end he gave me a script for some that were around 1/4 the strength in the end it cost me $25 for seeing the doctor and $120 for enough to last me 5 days so I really appreciate what we get from the NHS.

sorry I went a little off subject there, I advise you not to suddenly stop taking any medication as there are always some withdrawal symptoms from any strong medication.

I wish you luck in either managing or stopping your pain.

regards

Poppy Ann.

katieoxo60 profile image
katieoxo60

Hi Lifeexperience, sorry to hear about your problems with Gaberpentin. I was offered these drugs for an intermittent sever leg pain diagnosed as nerve pain without any investigation but refused to take them as I have COPD and these drugs are know to make the symptoms worse. Also my daughter took them for epilepsy which is what they are supposed to be for but had to withdraw as they caused even more fits. The side effects of this drug are horrendous, so I would say go back to doctor for an alternative as soon as possible. Best Wishes

lifexperience profile image
lifexperience in reply to katieoxo60

Thank you Katie. My partner does not want me to touch Pregabin. I don't think there are any other options. Normal painkillers do not touch my pain. I have spent to last twenty years with no effective drugs. Trouble is I have more than one condition and some drugs I can't take due to other medicine I am on.

katieoxo60 profile image
katieoxo60 in reply to lifexperience

Hi lifeexperience, I understand what you are saying, I have a similar problem that many drugs can't be taken because of my lung condition and others because of another problem. That is why I refused Gabapentin. They have been researching drugs for arthritis that are normally used for other illnesses so it's worth keeping upto date with latest treatments for arthritic pain even if you don't have arthritis it might help your pain. Laser treatment is used privately for soft tissue pain that persists which is another option. Like you pain is part of my daily life and has been for many years as is taking painkillers. But I have to admit pain is sometimes preferable to drug side effects. Have you tried Acupuncture? It works for many people. Sorry I can't come up with a wonder cure for your pain? Enjoy your weekend

lewis08 profile image
lewis08

Hi there,sorry your having problems,can i ask you how long have you been of gabapentin?i was on that evil drug.(im my eyes that's what it is)was on it for 9 months at a 900 mg dose a day for neauro pain,it did help a bit but the rot set in not long after,it dulls senses and masks other health problems,ive read up alot on this drug after i complained several times about severe and unbearable side affects,my doc took me off it but i was tapering down slowly as your definitly meant to do,i went into withdrawel,that was 3 months ago and i am suffering hell on earth stuff,too many to say,i have now to go and see 2 consultants next week hoping they can get me my life back,other people will say who are on gaba that its great,i disagree and it is not for everyone,i didnt take anything for fybromyalgia but nerve pain was bad and couldnt manage to do anything so i gave in and wish i had never took it,go back to your doctor,you will feel sick unsteady wont sleep in fact alot of side affects but hopefully they will go,do go and see your doctor and explain everything,it would be good to know how your feeling as im so ill now,kind regards ...jan..

lifexperience profile image
lifexperience in reply to lewis08

Hello Jan. I think 2 months. I had increased to two 300mg a day. I had already told my GP it wasn't working. But I think that fell on deaf ears. I have made an appointment to see the other GP.

Help91717 profile image
Help91717 in reply to lewis08

Hello how long did you take gabapebtin and how long did you deal with the side effect from withdrawal and when we're you able to get up and do things and ignore the anxiety? Sorry so many questions.

lifexperience profile image
lifexperience in reply to Help91717

Hello Help91717.

I came off Gabapentin within days. I didn't know I was suspposed to cut down over along period. I had insomnia for a few weeks. I always have anxiety. And I haven't find any drug helps with that. It's modern living. I can't cope with it. I believe this kind of drug can make some people quite ill trying to get of it. I didn't have trouble being up. I am rather concerned that Gps are dishing out these drugs which can course a lot of side effects and do not work for a lot of people. My Dr's are still trying to get me on epilespsy drugs. This time for migraines, but I refuse to take them. I don't think they are a majic cure for Fibromaglia, nerve pain or migraines. I was also on Lyrica it's sister drug and gained even more weight. Again the drug has no benefits and coursed me to become obese again. Weight gain is bad for my arthritis and my liver. And drove me mad being constantly hungary which is not the normal me.

lewis08 profile image
lewis08

Hi i wish you well with another doctor..heres hoping for me i will know exactly what damage this drug has did to me..keep in touch if you like..im glad your not so bad today..regards jan...have a nice weekend also..

kinneo profile image
kinneo

HI there, I have Primary and Secondary Lymphedema and nerve damage in both feet, and I am not Diabetic, I had tried everything over the years from Amytriptilene./The Pain patches Gabapentin and the Pregablin, all of which I found useless, the Gabapentin I used to take at night I found them doing nothing after being on them for a while so advised to take them in the day also to see if it helped, they made me feel absolutely loopy and very irritable, stopped them one day altogether never really noticed much difference, the pain was still there, After trying all these useless remedy's I still have pain24hrs I now just take Tramadol, I take two at about 11pm, and it just takes the edge off the pain a little so I can fall asleep, My sleeping pattern is horrendous because of the nerve pain, and it is mostly around 4pm or later sometimes before I drop off, I am scared of taking tabs thats why I try to manage my pain as much as possible in the day its hard because I am battling two things together, but if I have to I take the tramadol I will, but never would I take tabs on a set time again, because I don't believe that doctors know everything there is to know about the side effects that affect different people and therefore can cause a lot of heartache and more pain than you have already, Hope you managing better, XX

LynnB18 profile image
LynnB18

Hi I've been on gabapentin for months. Was on 800mg twice a day then 1200 at night. Couldn't cope and felt like a zombie. Now on 700mg 3 times per day. Tried pregabalin and 7 day patch but side effects were horrendous. So far haven't had any side effects reducing the dose. Went to chronic pain clinic for first time yesterday and doctor has prescribed prescribed two other tablets. One of which I took this morning. I have been in constant terrible pain for many years which my local GP put down to osteo arthritis. I started getting other symptoms and said to him, and other doctors in that practice that I was convinced I had MS. I got so sick of being fobbed off I paid privately to see a neurologist and have MRIs. He then confirmed I do have lesions on the brain, brain stem and going down my spine and I do have MS. To cut a long story short I have been referred to Charing X hospital and the doctor there is now saying I could have lupus, MS or both-she doesn't know. I am thoroughly p....d off. Has anyone found the NHS helpful? Lynn

lifeexperience, I am sorry you are having such a rotten time. I quit gabapentin and pregabalin for the reasons you describe, but I lowered the dose slowly so suffered no ill effects. Over the subsequent year I have lost 18kg without dieting. There are alternatives not mentioned above, which work for me and presumably work for others too: topiramate and oxcarbazepine and tramadol are just three from which I suffer no ill effects but get good pain relief. They should be prescribed by someone experienced to get the dose right for you. Remember GPs have no training in chronic pain and few even understand it is a neurological condition (hence brain drugs work). Make your GP appointment for a month's time and ask for a second opinion and to be referred to a pain clinic out of area. If your area cannot provide they should do this. The clinic may also offer various injection proceedures that may help you. The website "Institute for chronic pain" gives very clear information on how chronic pain works, although it is very well referenced I ignore the fact they don't support medication!!

niklenic profile image
niklenic

Yes I took myself off Gabapentin,for pain. Not because of side effects,I just decided, to cut some of my meds out. I had no withdrawal effects ,and it can't tell that I have come off them really:)

Upsetcrys profile image
Upsetcrys in reply to niklenic

Sounds good to me as I have strong mind and am pissed how I just now hear I have to wean off but I don't have time as need to be off them for tests coming up for surgery I need.

My PA put me on them for sciatic pain. I am not one for taking drugs but have sciatic nerve pain and he said I'd be fine. But now I want off and will do so by taken half and 1/4 and none within the next week. I was only on for 2 mos

Annabout profile image
Annabout

I was on gabapentin for a couple of years after having discitis which is an infection I had in the nerves in my spine.  I was also on Zomorph but only 10mg twice a day.  I decided to come off the gabapentin and I was crawling the walls.  Nobody told me to reduce the dose gradually so I just stopped taking them. It was awful but I stuck it out!  Meanwhile I started taking capsules for my chronic sinusitis.  They reacted badly with the Zomorph so I have had to stop taking them now.  I cut the Zomorph down to 1 x 10mg capsule a day but the doc prescribed me 2 a day.  Now I am in a quandary as to how to make myself feel better than I did.  I also feel bloated after eating and only ever manage to eat half the food on my plate.  I attend Slimming World once  a week but am really struggling.  Think I am in need of help as I have RA and OA too.  :-(

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