Author Topic: Gabapentin and Pregabalin  (Read 1797 times)

SunshineMeadows

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Gabapentin and Pregabalin
« on: November 18, 2011, 10:14:57 AM »
Please use this thread to ask questions and share your experiences related to using Gabapentin and Pregablin.

My experience was that Gabapentin made me feel to disorientated and sleepy but it did reduce the pain I suffer because of Trigeminal Neuralgia. One interesting aspect of me trying out the drug was that I started getting burning stinging pains in my upper back and in hindsight I think the amount of painkillers I was taking for the TN had been masking other pain I was suffering daily. After finding the side effects from Gabapentin were not resolving my gp put me on Pregabalin, which is a much more costly drug and so is generally only given to people who try Gabapentin first. Pregabalin seemed to work better but after a couple of weeks I realised how I was feeling not myself and I had in effect ended up exchanging on set of symptoms for another. Not being able to think straight, losing words and having a sense that I was seeing people that were not there was too spooky so I talked to my gp again and I slowly came off Pregabalin. The seeing people that were not there thing was caused by my mind and brain trying to make sense of the world around me. It is not uncommon for people to walk into a semi dark room and think a coat on a chair is someone. I think for me Pregabalin was affecting my sensory reasoning and this brought out more instinctual reactions of looking for danger. I did not feel afraid all the time or anything like that but this situation did make me worry for my mental health.

Both Gabapentin and Pregabalin were very good at dealing with the neuralgic pain I have but in terms of my ability to lead my life the side effects were too much. They are drugs that I would have had to take everyday and so the side affects would be there all the time whereas the TN pain I suffer daily varies from a 4 out of 10 to a 9 out of 10... okay ocassionally a face splitting 10 out of 10. With TN pain I can at least enjoy some time as 'me' - if that makes sense.

Hurtyback

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Re: Gabapentin and Pregabalin
« Reply #1 on: November 18, 2011, 12:17:00 PM »
I tried gabapentin earlier this year. It made me confused - Mr H used to laught at me because I just couldn't grasp what he was saying to me - and it also made me cough. Both my GP and the rheumatologist shook their heads at this and told me it was a 'very rare' side effect. In fact, if you look at the patient data sheet, it is a very common occurence but I guess many people don't realise or report the sedation as that is more of a problem. In my case, with spinal nerve-root pain, coughing is very painful  >yikes<. Then one day I tried to see what time it was and realised that I had 'forgotten' how to tell the time. This freaked me out to the extent that I stopped taking them!

When, some months later, I tried pregabalin we started at a very low dose (25mg once a day) and built up very gradually. By the time I rached 75mg per day (the usual starting dose and nowhere near enough to be working on the pain) I was very tearful and also bingeing. As a compulsive eater, I know how dangerous that route is for me, and I cannot afford to put on any more weight so, once again, I called it a day.

I know that these drugs can be very effective for some people, and I would never try and put someone off trying them, but they don't suit everyone.

MsC

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Re: Gabapentin and Pregabalin
« Reply #2 on: November 18, 2011, 12:31:44 PM »
Hello

I'm new on here but saw your post.

I'm on 400mg x3 a day for my trigeminal neuralgia which is facial nerve pain. I've been a sufferer for 2, almost 3, years now.

I find gabapentin to make me very tired and dizzy but it's the only medication that helps with my nerve pain although I do get 'flare ups'

leaf

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Re: Gabapentin and Pregabalin
« Reply #3 on: November 18, 2011, 03:44:45 PM »
I used Gabapentin for about six months, it didn't do much for me at all. I wasn't aware of much reduction in neuropathic pain, if anything it would make it worse for the first few days of starting or increasing the dose. Face pain oddly enough, and worsening of tinnitus and vertigo. I began to think it was chalk dust and perhaps a placebo, or a con-trick by big-pharma.

Towards the end of my trial with it, during a bout of agonising sciatica, I topped up with paracetamol and codeine (500/30), and that worked really well, which I attributed to the codeine. I didn't want to dose regularly on codeine, so once the bout of sciatica was over, I stopped everything. Then on the next flare/bout I tried the para/codeine on it's own, and it wasn't as effective as the gabapentin and para/codeine combo. So perhaps the GabaP was working after all. But by that time I just couldn't be bothered to titrate up, and go through all that heady/dizziness again. I find it actually makes my tinnitus worse, much worse.

There's a medical study which recognises the potentiating effect of opiates and Gabapentin, which allows lower doses of each to be taken than would normally be needed on their own. That certainly matched my experience with it.
I've not tried Pregabalin, I did get a script from the neurologist for it, but by that time my trust in neurologists and big-pharma was at an all time low, so I binned it.

Some people respond really well to these drugs, it seems extremely variable, however, they didn't suit me at all.

Sunshine

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Re: Gabapentin and Pregabalin
« Reply #4 on: November 18, 2011, 04:03:34 PM »
Leaf,

I like your signature. What you have and who you are :-)

Quite a lot of different medications like Gabapentin and Pregabalin have a listed possible side effect of dizziness, which can put people (like you and I ) with Menieres Disease in a less than helpful position. It is no good being in less pain of you still can't do things because other symptoms rise up like hairy monsters.

auntieCtheM

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Re: Gabapentin and Pregabalin
« Reply #5 on: November 18, 2011, 05:15:43 PM »
I too have been on both of these, and have stopped taking both.  I was not prepared to put up with the awful side effects for the rest of my life.

suessad

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Re: Gabapentin and Pregabalin
« Reply #6 on: November 18, 2011, 07:58:32 PM »
I too was put on Gabapentin.
Was I coming or going.  >yikes< 
I too weaned myself off them, then went to see my GP who wants me to see the neurosurgeon again.
Armed with what you are all saying about the alternative, I'm not sure I want them either.

Yvette

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Re: Gabapentin and Pregabalin
« Reply #7 on: November 18, 2011, 08:15:16 PM »
I was on Gabapentin twice earlier this year.  Both times for Carpal Tunnel pain which is nerve pain.

The first time, even though I increased the dose gradually,  it knocked me out for the count.  But it did help the worst of the pain by taking the edge off it, but that was as much as it did.  It didn't relieve the pain by any means.

The second time, I didn't want to be so knocked out and didn't take as much so it didn't do a thing.  I wasn't willing to up the dose, so I stopped it (gradually).  The level of pain relief wasn't worth the level of being knocked out.

Mistynow

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Re: Gabapentin and Pregabalin
« Reply #8 on: November 18, 2011, 09:21:30 PM »
I had Gabapentin but came off it within a few days due to side effects  >thumbsdown<

NeuralgicNeurotic

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Re: Gabapentin and Pregabalin
« Reply #9 on: November 18, 2011, 09:34:01 PM »
Thanks so much for starting this thread SunshineMeadows!

I was prescribed Gabapentin for a while last year, but had to stop within a few months, after finding out the hard way that it doesn't mix too well with certain MH conditions.  I found the pain relief it offered to be minimal.

I've been taking Pregabalin since August of this year, titrating upwards with extreme caution. Although 200mg daily is regarded as a sub-clinical dose, I think it may be helping to blunt some of the PN and unprovoked Vulvodynia symptoms. Aside from initial dizziness, drowsiness and wonky gait issues, the main physical side effects I've suffered are peripheral oedema, which can make using crutches quite painful, and occasional dysphagia, which can be very alarming. Mercifully these have tended to settle within a couple weeks of each increase in dose.

What's really worrying me is that over that last month or so, I've begun noticing an alteration in my thinking patterns.  It's not quite paranoid ideation, but something that seems disconcertingly prodromal - a heightened sense of suspicion, and an increased sensitivity to negative thoughts and ideas.  I'm honestly hoping it's not the Pregabalin, as it does seem to be showing some promise in terms of pain relief.  At least I'll see both my GP and CPN within the next few days, and so will have an opportunity to discuss the matter at length.

dmc_katana

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Re: Gabapentin and Pregabalin
« Reply #10 on: November 19, 2011, 07:52:10 AM »
Hi all,

I have been on Gabapentin, 900mg three times a day, for years know.  At the start the side effects i found were quite strange, one day I would be fine the next day I would be feeling as though I was watching my life from outside my body. :-(

All I know is that the pain from my diabetic neuropathy, increases from agony to torturious.  I would recomend that people listen to there bodies and decide what is best for them.

David  :-)

leaf

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Re: Gabapentin and Pregabalin
« Reply #11 on: November 19, 2011, 12:36:23 PM »
Thanks OTarchive, just before I posted the last message I was going to delete my sig, as I wasn't sure if it was acceptable, ie too negative or inappropriate, and as there aren't many other sigs to compare it with, it seemed a bit out of place. I tried to go for the balance of 'this is what ails me' but 'this is what I like in life' so thanks muchly for the reassurance and the thumbs up.

Finding any med for neuropathic pain (NeP) has been really difficult, I can put up with some side-effects if the benefits are tangible, but for me they haven't been at all. Just my bad luck I think, as quite a few others I know have had good results with some of these drugs. It's all hit and miss though, some can't tolerate GabaP but pregabalin does the trick, others find the opposite, then there are those for whom it does nothing or too much in the way of side effects.

It appears to be the same with the other meds for NeP, other Anti-seizure meds and various anti-depressants, such as amitryptyline and the newer SSRIs and SNRIs. Opiates or opioids aren't as useless as some Doctors like to make out. 

I had success with amitriptyline, it seemed to work very well for my NeP, but sedation, dry mouth, difficulty peeing, and being rather spaced out were troublesome but bearable because of the effectiveness of the pain relief. However, I had to stop taking it due to fairly serious cardiac arrhythmias that it was causing. I had the same problems with other anti-depressants and Tramadol. Just my bad luck again, on paper tramadol appears to be an ideal drug for NeP.

Most NSAIDS and aspirin-a-likes cause too much tinnitus and ear disturbance for someone with meniere's, so I just about bump along the bottom with paracetamol and a prescribed opiate. Not Ideal but it's the best combo for me, when all else is taken into consideration. I eventually got to this point with the help of a Pain Specialist, and I also had some help from physiotherapists along the way, although that can be hit and miss too.

Sorry I've strayed from the Gaba-pregaba thread, looking back on it I'm amazed I tried so many different drugs, and there are still some I would have liked to have tried. But I suppose I've found a point where things are not perfect but stable to a certain extent, and that is quite a relief in itself.

Danslatete

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Re: Gabapentin and Pregabalin
« Reply #12 on: November 19, 2011, 07:04:18 PM »
I tried Gabapentin for a brachial nerve injury, i had a terrible time with confusion, word finding and balance difficulties. I also put on a massive amount of weight, which did my spinal injuries no good what so ever, also the head injury rehab was set back due to all the side effects.
I am having my pain meds reviewed again the now, the doc wanted me to do give the gabapentin another go, but i refused. Ive done the amitrytpaline stuff but i was so conked out till luch time. So that has been changed to nortryptiline and after 3 days i stopped that as i was so very dizzy i thought i had an ear problem, i couldnt eat because i felt so sick and i was a really grumpy cow too. next week i am trialing pregablin. I have been told it has less side effects than the gabapentin but then again i was told the same about nortryptaline.
I have solpadol (codeine/paracetamol) which i take when i cant cope with it anymore. I cant take asprin based drugs so am not able to take most anti inflamatory meds. I have had tramadol and another like it begining with z, I have had distalgesic which were wonderful, but they were stoppped, so went on df118 ddyhydrocodeiene codydromol then solpadol. After being anemic for 2 years they stopped the bruffen/diclofenac, which meant i also stoppped the stomache protection things. I have had robaxin for spams and baclofen god knows a truck load of different meds. I got fed up of taking meds to counteract side effects of meds. I came off most and tried every method possible to help. I spent a lot on massage accupuncture chiropractic/osteopath hypnosis etc. It does come to a point when you cant cope without meds but i dont want to feel so out of it, nor end up taking meds for the side effects of meds.
Fingers crossed this next one helps as sciatica is driving me insane.

booboo

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Re: Gabapentin and Pregabalin
« Reply #13 on: November 19, 2011, 09:54:11 PM »
I was prescribed pregabalin for disc pain.  I found it helpful.  I was on a cocktail of different medications and found tremadol and fentanyl the most effective.  I had a discectomy which initially worked and then didnt so I had to have the op again.  Although I was terrified the pain was so intense I didnt really have any other option.  Luckily it worked second time around.


SunshineMeadows

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Re: Gabapentin and Pregabalin
« Reply #14 on: November 21, 2011, 01:23:56 PM »
Leaf,

Hi, I accidentially posted with Ouch Too Archive when I should have used this account. The reason not many people use signatures here is because on the previous site (Aimoo) people could add signatures which were bright colours differnt fonts and sizes so I disabled the option outright. Now we have moved it is easier for people to take a sensible approach of one or two lines.

Everyone,

It is interesting to see the way different drugs 'work' or dont work for different people.
I also think it is probably less likely for someone with a positive affect to post their experience online because heck they will be off living a better life wont they. I know out of everything I could have magically fixed (assuming no debilitating side affects) it would be Neuralgia that I would pick. Oh the things I could be out doing, not least of them would be going back to work, because I miss the challenge and of course the money.