Hi.im in hell and cant see anyway out.my problems started when i went on gabapentin for neauro pain.5-6 month off my mouth has shrunk i can hardly talk because my tounge feels too big..docs wouldnt listen to me or my husband or daughter or sister to how bad i am..my daughter took me up to doctor last thursday and she calmly told him that i have no quality of life.he wanted me to take mirtazapine..i did a couple of weeks ago.it shrunk my mouth went numb and my bottom lip parted..he knows what i should look like but blamed it on my diet but he is wrong.i dont look any where near like i did this time last year as i wasnt on gabapentin.im jerking have electric shocks all over my face creaking in it and jaw and neck.i have lots more but im getting so weak and hard to concentrate..my daughter told the doc i need to be seen by a neaurologist..he relented in the end..im sitting here alone just now and feel hopeless..my grandson phoned me on sunday to tell me he is a school boy now and my heart just broke..i could hardly talk to my darling grandson as i have to use all muscles to talk.im not the happy having a laugh and fun gran he knows..i just dont know what to do as every day gets worse.phoned doc in morning to tell him im worse.he is to phone me back but its.3pm and still hasnt phoned me,im at my wits end and petrified that im going undiagnosed and struggling to write this..dont know if gabapentin did this but i was not like this before gaba..it did start the face stuff jerking but that was nothing compared to this..does anyone know what could be wrong with me?im so ill and docs cant see it staring them in the face,any help i would appreciate..thank you in advance..jan.
Gapapentin and off it im in hell..help please... - Pain Concern
Gapapentin and off it im in hell..help please?!anyone help me im desperate..
Hi Jan - so sorry you're feeling so bad. I can't really offer any helpful advice. I did try gabapentin myself a few years ago but it gave me bad nightmares and hallucinations. I told my GP and she put me on pregabalin instead. I've been fine on that since.
It strikes me as odd that your doctor keeps you on gabapentin when it seems to be causing you such bad side effects. There is an alternative, as I said above. I hope you don't mind me saying this, but maybe you need to find a better doctor? Is there another doctor in the practice you could see instead? Could you take someone with you to the surgery to explain how bad you are - if the doctor doesn't seem to be able to see it him/herself?
I hope you're OK - you sounded desperate, and no-one replied to you until now (sometimes this board is a little quiet). Let us know how you are now, please. Did you doctor eventually ring back?
Hi caroline.thank's for getting in touch.im off gabapentin and have been for near six months because i was really ill on it.i tapered down slowly on docs advice but half way from 900mgs to 450mgs i couldnt cope with coming down on it so went back to docs and he said to stop gaba and put me on 20mgs x 3 a day pregablin..i went into withdrawal and i was a wreck.i came off the pregablin as well because by now through withdrawal i googled and found this site in may and knew then how bad these drugs were for me.the pain was beyond belief but i thought once its out my systom i would be fine.how wrong i was.my daughter has been up face to face with me as has my hubbie and sister.and ive saw at least 7 docs who all know me but all they wanted to do was give me antideppresents..i finally after getting nowhere gave in to them as i was and am severly deppressed now more than ever.yes doc phoned me back and i told him im much worse cant talk by that i mean not normal way i talk..he said to take the mirtazipine and he has sent a letter to a neauroligist.all this has taken its toll and i cant plan ahead as im sure nobody can help me when ive been asking for help since april..i just hope nobody has to go through whats happening to me..once again. thanks for responding..and hope your well..jan.
Hello Jan
Oh I am sorry everything has got on top of you. It isn't that people on't want to reply but sometimes it is hard to know how to help.
Everything which might have been suggested you seem to have tried.
A;; I am offer is a shoulder to lean on and ear to listen.
Gabapentin and its sister are drugs tha either work or don't. There doesn't appear to be a works a bit option. The side effects and peoples tolerace to pregabalin seem much better. When David started on them 10 years ago the pain nurse said he was likely to forhet where he lived. And yes he did so came off as slowly as he'd started.
Pain and depression go hand in hand and ofte anti depresents canbe helpful.
Have you managed to get to a pain clinic? They are the experts and do now side effects of all these drugs and can offer alternaties to ones you may react too.
I am at a bit of a loss as to what to suggest bit never feel you are alone.
Pat x
Hi paton hope your well and thanks.for responding..im meant to be seeing a neauroligist but could take time so if i can go private to see a consultant i will but i dont know how expensive that will be.not that i grudge it but i had to stop work and have to watch the cash at the moment..just want a proper diagnosis thats the main thing as im getting worse and more symptoms..wish you well
A pribate consultation is not that expensive. The costs come when you start received treatment and can soon mount up to bi money.
The consultant is a fowm of #queue' jumping if you like to get a quicker diagnosis and plan of how treame could proceed.
Certainly worth carefil consideration and if you can afford it I say go for it.
Pat x
Hi paton.thanks for response and away try to get a private consultant here in scotland.have no energy and all i do is sit and put up with this hell..docs dont care obviously..kind regards jan xx
I'm in Scotland too! We don't say can't up here. Message me if yo want.
Pat x
Hi paton.i dont know how to pm you here if that's what you mean?i am on facebook though..it's just started to dawn on me what's wrong now but i hope my fear's are not true..i cant keep on like this because i have no life..thank you for responding and yea i know us scottish folk dont say cant..just wish docs had listened to me and my family many months ago..hope your well..
Jan xx
Jan I'm so sorry you have had and are still having such a tough time. I've only recently found this board. I too and trying to reduce / stop some of the meds I have been on. Not because my pain is easier but because I suspect that the side effects from all the very powerful meds is actually making me feel worse. I may be wrong but until I can see the wood for the trees I won't know. As time has gone on the medics have added in more and more different and powerful drugs.
I'm NOT suggesting anyone should do the same or even that I'm doing the right thing - this is personal choice.
Just to say, I'm around here a fair amount now and I tend to be a good pair of ears
Hi thanks for taking the time to respond to my post.i am now hoping to see a neauroligist but could be a long way off?im thinking of trying to find a private consultant as now i cant do anything by mysef and i fear things wont get better.im struggling with alot..its nice to know that your all here for me..im here too for anyone who are struggling like me..jan
Hi chic Iam doing the same as you not told my Doctor as she just wonts to put pills up. Iam on some hevy painkillers and having bad withdrawles. But need to see if iam any worse off. but pain bad but have to cary on to find out as some meds are just a joke in my book. I wonted to say good luck but be carefull don't do what iam doing as prity stupid but I hate wateing on a doctor takeing for ever to get u of pills! Iam unoprative but think these drugs make u worse mentely, not the reson you have to take them for physical pain. so hope light at end for both of us chic. god luck. lizzyx
What is the cause of your Neuro pain Jan? Who gave you a diagnosis?
Hi calceolaria..i was put on gabapentin initially without a diagnosis..i did not like the thought of taking it without a diagnosis but pain got so bad i started taking it.i then had an MRI scan last december which in layman's terms was sciatica in my back.physio told me this,neuoroligist didnt want to see me and i dont know why.a very young and new doc at my surgery had written to them.even the physio asked why i was jerking etc.i said ive been doing that since i went in gaba but although he saw the state i was in he did not tell the neauroligist as they all work closely and i feel ive been let down by everyone and im angry and so worried by the state im in now.thank you for responding..jan.
If nothing else today, you have made me more content with my lot. Gaba increased , so has weight (fat already) and was feeling sorry for myself as already living on 1000 cals. But poor you, it does sound awful and I truely hope that you may find an answer and get relief quickly. Good luck, we're here for you.
Hi Heorte I'm on 700mg of gabapentin 3 times per day. I refused to increase the dose anymore as when I did I felt terrible and zoned out. I tried pregabalin but had to come straight off it as, mentally, it had an awful effect on me. Weight is most certainly an issue. I'm trying to lose it again and haven't gone near the scales just bought next size up trousers! I really hope you and jan find the help you need. The last time I saw my doctor and the one at hospital I said I'd get more help from the local vet...Lynn
Again you have made me smile - perhaps we are missing a valuable resource in vets!
after all, a vet CAN treat a human but a doctor can't treat animals Fact!
LOL
Hi lyn thanks for responding.just want to know whats really wrong with me..dont want to be ignored and ive even said myself over 5 months a worm would get better treated than me and i know all this..hope your well and.best wishes.jan..
I so agree with you. I told my doctor over and over again that I was sure I had MS, he just kept saying over the years that it was osteo arthritis. I got so frustrated that I saw a neurologist privately-£1,000 well spent. I have got secondary progressive MS and have had it for many years. I am in constant pain and can't go out on my own and have had to stop driving. Doctors do not listen just write out another prescription to make you go away. Best wishes Lynn
Im sorry you have MS lynn.i know i something neaurological going on but also other stuff as well.autoimmune etc perhaps?i cant do much at all.even brushing my teeth is a nightmare as i cant keep my arm and hand still then i get the burning gums like boiling water and my mouth takes on all different weird stuff.i noticed this about my mouth while on gaba but masked alot of stuff until i was off it,just want a diagnosis and hope thats possible very soon.it wont go away and wished i had changed docs months ago.hope your day goes well lynn..regards jan
Please go to another surgery, a dog would be treated better than you. What meds do you take? Can you afford to pay for an initial consultation with a private specialist? If you can go and see one then at least they are an expert and if something is wrong and you need tests then he will write to your gp who will then have to take notice x
I don't know what it could be sweetheart, but sounds horrible. Could you have had a mini stroke? Or perhaps it has something to do with the medicine and it's a terrible reaction. I think I'd see another doctor since the one you are going to doesn't seem to want to help. Hope you get things straightened out soon!!! xxx Mitzi
Hi mitzi and thanks for advice etc,dont know what it is but i have been bad today.worst one ever.the docs referring me to a neauroligist..a thing that should have been done at least 6 months ago but waiting lists are long.he had no option about the neauroligist by the way mitzi.my daughter and i went up to see doc last thursday and told him exactly what he should do for me.he argued but we were not leaving that place till he did something positive for me as no proffessional health person seems to care.well not here anyway.just so afraid as my whole bodys not right and its just to hardvto cope..kind regards jan xxxxx
Bless your heart. That's just ridiculous, if they don't have compassion then they shouldn't be a doctor in the first place. Hope your symptoms start to ease sweetheart. Maybe if you call the specialist and explain, they can get you in faster. I'd find a new gp as the one you have should be run out of town. Let me know how it goes. Praying you get the help you need to ease your suffering. Hang in there!!! xxx Mitzi
Thank you mitzi.my sis was keeping me company there.i took the antidepressent but my mouths changed again and im now fearing what happened yesterday evening..lots of what i call vibrations all from feet to my chest ingulfed me and thought this is it.this is so bad and off my legs..cant eat..i cant feel my teeth..its too weird and horrendous is not the word..but thank you for responding..im away to google for private consultant and hope i get one soon.no one should suffer this hell.i know it was gabapentin that started this but theres too much i really have no self esteem now..nobody would know its me now..sorry for moaning thats all i do these days..not me at all..kind regards jan xxxxx
Oh sweetheart you have every right to moan!!! If you can't get into a doctor maybe you need to go straight to the ER. You can't be expected to cope with everything you are suffering. I'd like to give your so called doctor a good and shameful piece of my mind!!! Best of luck my sweet darling, xxx Mitzi
Thank you mitzi.A& E wont even bother without a doctors letter and if its been an ongoing problem..i did get paramedics out they took me to our best hospital but was sent back home and told to go back to my docs..i just saw a post there that has made me worry more..thrush on her tounge caused cancer and i have had thrush due to inhalers and antibiotics..ENT and endoscopy confirmed this but the treatment made me ill so i had to stop.god wish i had never saw that post..poor woman..was meant to get another appt with.ENT but i havent..regards jan xxxxx
I have it in my esophagus and have to have probes next week. They gave me meds so I'm wondering why they didn't do the same for her as I read the post also. They gave me an anti-fungal drug, but it keeps coming back from acid reflux. Find a NEW DOCTOR!!!! PLEASE
xxxx Mitzi
Hi mitzi..i had or maybe still have it in my larynx and anti fungal tabs made me more ill.i was meant to be seen again.at ENT to make sure it had gone away.what with everything thats happened to me i should have got my doctor to investigate this..theres been alot going on me and tests etc but i think its upto doctors to work together ive been over looked to many times..takes a while to change docs but once again my so called docs will have to be called but there fed up of me and i am so so sick of them really..regards and hope all goes well...jan xxxxx
I understand sweetheart. They really treat you like a piece of meat. I'm seeing 3 and all are stumped as to why I have the fungus in my esophagus because I haven't been on antibiotics, steroids or inhalers so I'm stuck between everyone scratching their heads like we don't have a clue. I really do hope you get some doctor who can help it's no fun when suffering on top of being so frustrated. Best of luck getting some relief darling. xxx Mitzi
Hi iam new on this hun but I to take gabapentin. I have done for a whyle and have know got to the habet of my jaw moveing and gritting my teeth all so get sore heads and bones all over! I have Friends who take it to and all have problems. If u go to googel and look it up you will see so meney side afecks it is unreal this could help you to find out if it is these pills I would not be surprised if it is chic. iam so soz u gp is a clown. lots of doctors don't care. overworked so easy to write a prescription out and move on to nexst patient. But not all are bad don't give up demand to be referd to see someone who knows what they are doing it is youre life not theres! I wish you all the luck in the world and pray you get help a.s.p. lizzy xx
Hi
Just read all your posts and replies, how are you now, please tell me you are getting better and now have a diagnosis.
Diane
Xx
Hi Lewis08 - I have been taking gabapentin for years and I have no problem with it. I take it as a migraine preventative. I have head-banging type migraines that last for months. Gabapenentin helps to keep them from coming on. However, I have so much pain from knees and back that I stay in bed most of the time. But it really has nothing to do with my meds. I do take a lot of Norco for pain, and it helps, but makes me sleepy. Like you, I have a lot going on.
Nita in Aurora, illinois USA
Hi, yeah sounds like you are in pain and obviously anxious. Sorry to hear this. I can't offer any advice as I have never taken that medication. I wish you all the best however.
Hi Jan,I am sorry you are going through this. You don’t say exactly why you are taking Gabapentin. I have been taking it for a very long time now as well as a number of other drugs. My only real (but major) problem I had was when it stopped suddenly as I had a major operation. I was in ICU ‘on another planet ‘ to quote my surgeon. If you are either taking other medications or it was increased rapidly that could potentially cause problems.
Have you thought to speak to your pharmacist? They are the experts on drugs and interactions - far more so than doctors as it is their specialty.
I hope that, whatever the cause is, ithe problem is quickly resolved.
I’m so sorry to hear you’re going through this. Gabapentin is a strong medicine. I became so ill because of a combination of Lyrica and soma that I was extremely ill for six months and ended up having to retire before I wanted to. Your concerns about gabapentin are understandable. It is a difficult medication to take and you have to start out with small doses. While I am now taking horizant and some gabapentin to relieve pain including neuropathic pain , I started out on a very low-dose and worked up to higher doses. That made it easier. Having said that, I still have very demanding and difficult side effects. I would see another doctor if the current one is not respecting your feedback about how the medicine is impacting you You are not necessarily incorrect. There are lots of side effects. Take care , Nona
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