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Gabapentin - your experiences

I am suffering with increasing neuropathic pain day and night but have been putting off the gabapentin for a while now.

I was prescribed this nearly a year ago but the pain wasn’t constant then.

My concern is the increase in fatigue it can cause and all the other MANY side effects listed. I do drive when i’m well enough and as i live in a very rural area, this is important to me.

I’ve also been doing some research on gabapentin and have read some very unnerving facts about how most people become dependant on it and are unable to come off it if they want to, needing to take higher and higher dosages.

I would appreciate any reviews good or bad.

Thank you

Hi I was on gabapitin until very recently , I had gone up from 300mgs 3 times a day to 600mg 3 times a day because it wasn’t dealing with the pain in legs I was getting and going up to the higher dose made the pain worse for me so I have come off that and I am now on pregablen 100mg 3 times a day much better for my type of pain .

I had no side effects that I know of and coming off was not a problem but then I was going onto the other at the same time so didn’t get any real withdrawal symptoms . It didn’t seem to make my fatigue any worse but that is just my experience and I am sure other people will have different stories .

Take care Katy

Hi,

I have been on gabapentin for a long time, since I had my hips replaced a few years ago.

I have never had any side effects and highly recommend it. It has helped the leg problems I have had and personally I think my legs would have been worse since my MS diagnosis without the Gabapentin.

I have not had any fatigue with it, my tiredness is down to my MS in my opinion.

It doesn’t work for everyone but does for me.

I wish you all the best.

Hi, I’ve been on gabapentin for a few years now and don’t really have any side effects, well not that I can put done to it. I take a lot of tablets for other things and their side effects are roughly the same from tiredness, constipation, down to weight gain. My dose is 2 300mg tablets 3 times a day.

It’s just another thing we have to put up with because of the horrible disease called MS.

I’m sorry I can’t be any more help, but good luck and I hope you manage to find the best mix of tablets for your MS.

Bump !

Lisar,

I have only been using Gabapentin for about three months now. I have neuropathic pain in my right leg which does seem to respond to the drug.

Presently I take between 1200 and 1500 mgs daily, divided into three doses, although I am fully aware that the maximum daily dose is 3600 mgs. I am reluctant to increase the dose unless I am compelled to do so as, like you, I am anxious to avoid any drug dependency.

I cannot isolate any specific side effects and I am convinced that there has been no increase in my fatigue since starting the drug. That may be because my dose is relatively low.

I presume that you have discussed your fears with your MS nurse, as he/she will have a wider base of experience upon which to draw. You will be able to raise your concerns and also agree upon a suitable starting dose, should you decide to proceed.

I wish you well and I would be interested to know your decision and whether your MS nurse offers an alternative.

Alun

Hi Y’all,

  1. I was on Gabapentin, which didn’t work after a while.
  2. Changed to Pregabalin which didn’t work.
  3. I’m now on Amitriptyline which does; if you don’t count the top-up with Co-codamol 30/500.
  4. Baclofen for the spasms. Stopped that because side effects included turning me into Dr Jekyll & Mr Hyde.
  5. Replaced with Dantrium which turns my legs to jelly.
  6. Cilatopram for depression.
  7. Vit B Strong Compound for energy release.

I stopped Cilatopram yesterday because I was getting hyperactive. At 9pm I pulled the handle off a cupboard. I then exploded like a hand-grenade in a dustbin. Perfectly good Valentine’s Day ruined in 15 seconds. Got the flowers and everything. Back on Cilatopram by 9.30pm.

It’s a shitty day when you try so hard, for so long, to be on your best behaviour and then that happens. Gill never even batted an eyelid.

She’s my heroine. I thought I was the strong one; but its her keeping us together now. There is a God.

A.

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I’ve been on Gabapentin since December 2013 had a dry mouth for a while, but that has sorted itself out - no other side effects. I did get up to 2700 mg (3x300 - 3 times a day) at one point (started at a low dose and increased every couple of weeks until the pain was at a level I could tolerate), but I’m in the process of reducing the dose, I’m on 1800 mg (2 x 300 - 3 times a day) now with no problem, along with 20 mg of Amitriptyline at night - did reduce the Amitrip’ to 10 mg for a while (about 7 weeks), but the night time pain issues put me back up to 20 mg.

Pain is my main issue/symptom with fatigue in second and balance issues taking third, I find that taking the G/A combination works well for me. Pain controlled = easier to relax/switch off/rest = less fatigue = better balance.

Gabapentin (and Amitriptyline) are addictive drugs, but so are a lot of over the counter medications. You just need to discuss their usage and potential withdrawal with your GP/Neuro and work out the best plan for your symptoms.

I’ve been on Gabapentin for several years now with no problems. I take it for neuropathic pain, spasms and the hug.

My dosage is 2400 mgs per day, 3 x 800, which I find to be fairly efficacious. I’ve never tried to come off it, so can’t comment on the question of dependency.

Ben

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I tried gabapentin several years ago, starting on a low dose, building it up to the maximum over several weeks. It solved the pain problem, but turned my legs to jelly, leaving me unable to walk or stand at all, so I stopped. No nasty side effects quitting even though I stopped suddenly. I got my legs back too! Oh, and the pain had been due to a trapped nerve which physio cured, but I had to pay privately for that.

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I was diagnosed earlier this year. Since my diagnosis I had progressively worsened. My Main issues were leg pain, and my legs felt as though they had walked up Mount Everest the day before.

I take 50 mg of amitriptyline on a night time. This worked fantastically for the pain and restless legs and I would get a decent night sleep every night. The pain would come back between Lunchtime and Teatime.

When I last saw my neurologist I told him all of y syptoms and he suggested Gabapentin. My GP prescribed 300 Mg per day. This made no difference at all.

After seeing the nurse, she told me to up it to at least 900Mg per day, which I did on Wednesday this week. It was unbelievable the effect it had on me. It was amazing and felt like a magic wand had rid me of this terrible condition. I came in after work and literally run up the stairs to see my wife. This time last week, I was crawling on my hands and knees up the stairs.

I am suffering a bit with indigestion, however, I have always struggled with this, especially around Christmas. Mince pies, Chocolate, Beer etc So I am going to take it for a few more weeks and see my nurse again.

WIshing everyone a lovely Christmas and all the best for the new year.

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I’ve been on it for 10 years now and couldn’t manage without it for nerve pain. Your body will adjust to the fatigue it may cause after a while. Give it a try.

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I have had MS for many years but it is in the last few years that I have really felt the effects. At present I take 900mg of Gabapentin in the morning and 1200mg at night along with 40mg of Amitriptyline so I can get a good night’s sleep.I keep wondering if another drug would be more effective - any thoughts?

Gabapentine did nothing for me so changed to Pregabalin, again no noticeable benefits.

Oddly though my MS clinic gave the meds for spasms/ spasticity, so thats probably why I saw no benefit.

Hi Lisar - I have been on Gabapentin for quite a while and I think the beneficial relief from pain out ways the tiredness that it can bring.

I have ms and since 2 years suffer from trigeminal neuralgia. I am on carbamazipine. Kept having to up the dose to control the pain and now I am on 600mg twice a day. My neurologist wants to change to gabapenin because of all the side effects and the high dose of carbamazipine. Does anybody have experience with that? I am so afraid of an other attack and this horrible pain.

Hiya

Been on it for over three years - 1800 mg a day. I feel a bit sleepy/groggy on it in the evenings and now and then ill get a bad tummy. Key to it is what times of day you start taking it.

I start at three pm and increase dose rest of the day - works fine that way.

It helps pain very well, also muscle spasms.

Good luck

Ju

xx

I’m on Gabapentin… but it does nothing…!!!

Were you given meds for spasms / spasticity…??? By mistake…??? What were they…???

I desperately need meds’ for spasms / spasticity… I’ll have to change my forum ID to annetheplank…

I’m getting no help from anyone… I’m guessing that East and North Herts Health Trust are ‘restructuring’ as my neuro has a new secretary… but I am now overdue for my 3 month follow-up…

Plan for today: try to book an appointment myself; if / when that fails, I shall try phoning 111…

Anne

Given specifically for spasms/spasticity by MS clinic.

Gabapentin first then Pregablin.

After these I tried Baclofen combined with Gabapentin first, no real response, so then with Pregablin again nothing beneficial, so we tried Baclofen on its own, once again nothing.

I’m now trying clonazepam at a small dose 0.5mg at night just to help spasm/jerky legs, then I’ll be adding Tinazadine for the spasticity in about 1 weeks time, again starting on a low dose and working up until hopefully theres a noticeable difference .

These last 2 meds were prescribed by my local spasticity clinic not the MS clinic.

I asked to be seen by a spasticity consultant because I felt that the MS clinic weren’t really dealing with the spasticity/spasms, and in my mind I think it should be left to a spasticity specialist to deal with these issues, not a neurologist.

After all, theses are symptoms of MS but its the neuros job to diagnose the problem then the spasticity specialist can deal with the symptoms.

I have used Gabapentin for many years now and I feel that your worries are misplaced. It is not a complete relief from the pain but it certainly helps.