HELP ANYBODY?

[lewis08]

I was on liquid gabapentin 900mgs a day for neauropathic pain,i had tapered down slowly to 450mgs,i couldnt cope with horrendous side affect's ( my mouth was like metal,plastic and stone)weird i know that,doc took me straight off the gabapentin and i went into withdrawal,never ever been so ill,now i'm off that terrible drug 4 weeks now i still have the seriously bad mouth and pain came back million times worse,docs are not trying very much to help me,mouth dry as a bone 24/7 and can eat very little,has to be mush,HAS ANYONE HAD THESE SYMPTOMS AFTER BEING OFF GABAPENTIN?any help would be very much appreciated,tried before but i guess this is a difficult one?just want my life back?i'm a lady by the way who always takes care of my skin hair etc..no oils or moisture,at my wits end now..if you can help then please do..thanks!

[welshnut]

I have not suffered from a dry mouth after coming off gabapentin but did while I was on it, I often get a dry mouth as a result of different meds especially amytriptloline. The one thing that I find helps a lot is a drink of pineapple and coconut juice with crushed ice. The sharpness seems to activate the moisture in my mouth and the ice is very soothing. Hope you find a solution soon.

nutty

[lewis08 in reply to welshnut]

Hi nutty...thanks for your response...i already take pinneapple through out the day...it helps a bit..better getting back to docs though cause its not just the badly dry mouth...take care!

[LynnB18]

Hi I'm sorry you are feeling so bad. I take gabapentin, and because they are not controlling the pain, the doctor keeps increasing the dose. I now take 800mg three times per day. They are still not controlling the pain. Like you I have a very dry mouth. My hair is also beginning to feel very thin. I am sorry to say that the doctors don't seem to care. I haven't tried coming off this drug yet. How long had you been taking them before you stopped completely? Have they put you on anything else? I know this isn't an answer to your question but, if anything, it can help to talk about it Lynn

[lewis08 in reply to LynnB18]

Hi there.thanks for responding,i was on gabapentin for 9 month's and helped my pain a little,it also masked other pain i had going on at the same timei wanted off this drug as side affects were so bad,i was offered more pain killers but when i checked up they also had really bad side affects too,nefopam i think?m skin and hair look bad since i went on gabapentin and never looked m age,think something more sinister is going on with my mouth and docs are useless,sorry to say that,im struggling from day to day and all the pain has came back with a vengeance,dont know of anyone else taking gabapentin that has all the really bad time im having,four weeks off it now,doc cut me off them half way down my tapering dose,i went into withdrawal which was hell on earth,at a loss really,just want to be the way i was before gabapentin even with the pain,im so sorry i ever started on this drug,maybe ok for other people but certainly not me,keep in touch if you like,it's good to get stuff off our minds.

[LynnB18 in reply to lewis08]

It is good to talk to people. Can I ask what is causing your pain. I'm supposed to have MS but after going to charing x hospital Friday the doctor is not so sure. I went privately in feb and had MRIs which I thought confirmed it but now god knows lynn

[lewis08 in reply to LynnB18]

I had an mri scan and have bit nerve damage and what they call sciatica in my neck.pain goes right along my shoulder and right down my left arm.so painful and electric shocks all day long..its much worse now though than it ever was...i have had fybromyalgia for over 12 years as well...all in all the pain is keeping me from having a normal life...too much pain to try and even have a meal..tried last week and stayed an hour...i just could not wait to go home...need to see a neaur doctor i think...jan

[mitziblue]

So sorry for all you are going through. I was on a med once that left my bladder weak. They took in off the market but that doesn't help my bladder. If you don't, please go to a pain clinic as they could and would be more able to help you with your pain and concern's. Hope this help's sweetheart, and you find some relief soon!!! xxx Mitzi

[lewis08 in reply to mitziblue]

Thank you mitzi..i am waiting on an appointment from the pain clinic.i hope soon i recieve one..i think i am at breaking point..well past that now.just sat and wrote a letter to my partner...was going to end it?dont have the guts?can only take so much and been hell for months..i cant see the end to this nightmare no matter what i say to doctor's..im so low..but hey thanks hun for your kind words it was nice of you to take time to do this niceness.i hope your not suffering hun.god bless take care xx

[mitziblue in reply to lewis08]

The pain clinic will help so hang in there. I know it's hard. I went to the doctor today as I think I have an ulcer. I'm have the old scopes up both ends next month....oh joy. Lol Hope you get in soon sweetheart!!!! xxxx Mitzi

[lewis08 in reply to mitziblue]

Aw thanks mitzi..hope all goes well for you next month?oh the scopes?yea had all those..you"ll know then if you do have an ulcer for sure..take care..keep in touch if you ever feel like it hun..it's good to talk...jan

[costabuck]

Hi Lewis08

I'm so sorry you're having so much pain which sounds like it's neuropathic pain. I won't bore you with my details unless you would like to know but basically I was on pretty much the same dose as you as well as a mixture of others. I also had the same side effects as you with taking gabapentin and I eventually couldn't take them anymore, the side effects were worse than the relief for me. Rather than go cold turkey, which I have done on a few occasions and was hell, I went on to pregablin which is similar but I find much better for me. There are some side effects, aren't there always, but nothing like as bad as what I was getting with gabapentin. It's hard to get the right doses and right tablets as far as your doctor is concerned but they will get there, there's so many different drugs out there to help. Now I sound like a drug addict! Ive had to manage my pain for the last 20 years and believe me when I say I've tried most of them. Please don't give up or in, talk to your family and have an honest conversation with them. They probably want to help but just don't know how at the moment. I'm always happy to listen on a bad day, we all get them. Actually, I wouldn't mind a good day come to think of it!! Here to help if I can.

K

[lewis08 in reply to costabuck]

Hi and thank you for trying to help me...i was down to 450mgs of gabapentin when my doctor (stupidly in my opinion) put me straight onto pregablin 20mg x3 a day...i was'nt to know i would go into withdrawal but i did...it was hell..nh24 told me to stop the pregablin (had to be a bank holiday wouldnt it?)i tried so many times telling docs etc what that stuff was doing to my mouth...my biggest dilemma at the moment plus complete dry mouth...nothing helps...yes is neauropathic pain had an mri scan last december,docs already had me on the gaba without a proper diagnosis...i will be going to the pain clinic..soon i hope and dental hospital obviously for my mouth...think that med has damaged my mouth and no cure?keep thinking this because its 7 months on and mouth gets worse,yes neauro pain worse too..just about tolerate but the mouth thats something else...know i keep saying mouth but that is the main priority for me at this time..also lost oils moisture from skin and hair...as a lady thats a big deal for me as look much younger than my age (good for me?)its a long slow process...now its evening and just gets worse...feeling sorry for myself now...oops,my family all know and been to docs with me,saying i should never have been put on gaba,too late now?anyway as you can see im a blether..least keeps my mind off the M word for a bit,thank you for responding and wish you well.stay in touch if you do so wish...jan

[costabuck in reply to lewis08]

I would like to keep in touch if that's ok as I'm going through the same thing and if you or I have a good outcome then it'll be worth while sharing what works or doesn't. I must admit I did have a fantastic consultant over the last 20 years but unfortunately he has now retired. He was the man who invented the neuromed Stimulator that I wear now that I use towards my pain management. Without it I really can't do anything but with the drugs (prescribed) I take & the 32 electrodes fitted in me then life is bearable. However, the side effects of all the drugs is taking it's toll on me and I stuck with the most simple of things. Dry mouth & metallic I'm constantly drinking & all I want to do is brush my teeth but that dries it out even more! Vicious circle & so very frustrating.

I'll let you know if I get any where with it all.

k

[lewis08 in reply to costabuck]

Hi yes please do keep in touch,would love to be able to tell you if my mouth is normalagain,just think?freedom oh the joy that would be,as for my pain hope pain clinic can help?i wont take anything drug wise for my pain..thats for sure,yes do let me know how you are from time to time,anytime really,if you need someone?i will always reply soon as poss,anyway took a sleeping tab..not long term just for now,away try sleep now i hope,take care and hopefully everything might just get a bit. more easier as time goes on...i do hope so.night for now and here's hoping you get a decent sleep.thanks again for responding....jan

[mikew]

Sorry to hear of your troubles Lewis08

I have Fibro and my GP has tried me on many differing tablets, Gabapentin and Pregabalin were tried seperately and both gave very bad side effects.

Dry mouth was the most plesant, with the worst being suicidal and murderous fellings these only came on when I was on 300 mg tablets, but it was strange that although I knew the thoughts were not normal for me they seemed totally sane, I was lucky that I was able to understand that these were not my thoughts and that they were the drugs effects. BUT VERY SCARY. I informed my GP by phone he told me to stop taking them immediately and come in for a chat.

Worse still is that I still have dry mouth but these sympton is also caused by Amytriptloline, my GP said try chewing gum or mints, Tic Tacs are nice as the flavours help get that taste out. Hope that helps.