Gaba\Lyrica\Gabapentin

[Pegasus]

Hello

Has anyone have experience with the following:

Gaba
Lyrica \ Pregabalin
Gabapentin - Fanatrex\Gabarone\ Neogab \Gralise \Neurontin \Nupentin

usage and dosages? and especially if you noticed any effects regarding muscle tone \ tension and pain.

thanks!

 

[Cindi]

My neurologist prescribed me Lyrica. I asked opinion of my naturopath who is working with PWC's for many years. he told me he had not seen any CFs patient benefitting from Lyrica. He advised me not to take it and I did not. Gaba calms me down but i do not use it regularly.

 

[Calathea]

I was put on gabapentin for nerve pain, gradually raising the dose until 3000mg as I'd heard that it could be useful for ME. It didn't do much for the pain, though I slept better on it. The side effects were troublesome, it wasn't really worth it, so I was tapered off at a speed of 300mg per week. This, I discovered the hard way, was much too fast. I'm too tired to go into the withdrawal details but you should be able to find my descriptions if you search for "gabapentin" with my name. It was nasty, particularly the insomnia, and I'm still not fully recovered. I would advise extreme caution.

 

[heapsreal]

i use neurontin for lower leg pains/myalgia's that interrupt my sleep at night and it works well but i havent found it that helpful for other types of pains. I do sometimes use lyrica which isnt as good for these leg pains but does help with general aches and pains, helps with lower back pain( facet joint arthritis) and i find lyrica somewhat sedating which i dont get anything like that with neurontin. so lyrica helps improve my sleep quality. doses i use are 600mg of neurontin and when i use lyrica i use 150mg, i only take these meds at night.

You might want to consider baclofen as well, its a muscle relaxer and helps improve sleep, its cheap too.

cheers!!!

 

[Sasha]

I have been on Lyrica for insomnia (I don't have muscle pain) for maybe a couple of years now, at 75mg. It has certainly improved my sleep, although my sleep still isn't perfect (often wake in the night but not as often as before; don't wake early now without being able to get to sleep; sleep onset not delayed as much; sleep still unrefreshing). I'm pleased with it.

I tried several sleep meds before settling on Lyrica. I seem to remember that I titrated the dose up from 25mg over a couple of weeks, found 100mg too much (very dopey and stunned the next day) and dropped back to 75mg, where I've stayed. No side-effects, no habituation that I'm aware of.

 

[Pegasus]

Good input guys.thanks

That baclofen seems promising.i really need something to switch off tension,as my muscles cant stop being tight all the time!

 

[Nielk]

Pegasus,

You really should try each one for yourself.
I found that we each react so differently with medications. Lyrica did not help me at all and I had adverse effects.

Neurontin for example did nothing for me at all. For Calathea, the side effects and withdrawal were a nightmare.
About a year ago, I met a CFS patient in my doctor's office who went from being totally bedbound for many years to being very functional just from taking Neurontin/Gabapentin.

The best of luck,

Nielk

 

[xks201]

It depends on what you are deficient in...gabapentin can help if you are deficient in gaba since it basically acts like gaba. Muscle pain I would think SIBO or hormone deficiencies more so than a need for something just to numb your nerves.

 

[*GG*]

I have been on Lyrica for insomnia (I don't have muscle pain) for maybe a couple of years now, at 75mg. It has certainly improved my sleep, although my sleep still isn't perfect (often wake in the night but not as often as before; don't wake early now without being able to get to sleep; sleep onset not delayed as much; sleep still unrefreshing). I'm pleased with it.

I tried several sleep meds before settling on Lyrica. I seem to remember that I titrated the dose up from 25mg over a couple of weeks, found 100mg too much (very dopey and stunned the next day) and dropped back to 75mg, where I've stayed. No side-effects, no habituation that I'm aware of.

Hmm, I wonder if you should try something else? I found an anti-depressant a coupl of years ago, was on Trazadone, tried Remeron, did not work at all, now on Mirtazapine, and I wake up feeling much better!

GG

 

[jeffrez]

I took neurontin for a few years, at pretty high dose for a while - like 3600-4800mg, etc., although majority of the time it was more like 900-1200mg. The first dose I took I felt really great, brain fog totally cleared, energy was a bit better. But then I could never fully duplicate those benefits again. It helped a little for sleep and to balance out mood, so I stayed on it for a while. Eventually the downsides in actually making the brainfog worse were not worth it, so I just went off it. Felt no real negative repercussions or long-term effects from it that I could tell.

 

[john66]

Both made me feel strange and gained weight quickly, especially with Lyrica. My nickname for Nuerontin was Morontin because in made me so slow mentally. Sleep was better.

 

[MishMash]

The effects start strongly then fade after time. Then you need more and more. Until its stops working completely. That's for those who don't go sailing into lala land first. Or go pyschotic. They are all off-label anti-convulsive / anti-seizures meds. Not sure what studies back up use for FM. Probably meant as a substitute for the fading SSRI industry. In the US the doctors will give you all these meds by the bucketload because they are still profitable for pharma companies.

 

[Sasha]

Hmm, I wonder if you should try something else? I found an anti-depressant a coupl of years ago, was on Trazadone, tried Remeron, did not work at all, now on Mirtazapine, and I wake up feeling much better!

GG

Hi GG - I tried a ton of stuff at the time - one drug after another (Trazadone, Amitryptiline, other stuff) and each for about a couple of weeks to give initial side-effects a chance to die down (which is necessary for these kinds of drugs) and it was a pretty unpleasant experience. I was so relieved to find something that worked that I stopped at Lyrica. At the mo I'm trying additional treatments (including MAF) and don't want to change other variables so that I can see if these other things are working but maybe I should consider some new sleep meds further down the line if there's no improvement, as you suggest.

 

[jeffrez]

Hmm, I wonder if you should try something else? I found an anti-depressant a coupl of years ago, was on Trazadone, tried Remeron, did not work at all, now on Mirtazapine, and I wake up feeling much better!

GG

I thought Remeron *was* mirtazapine? Or do you mean a generic worked and brand name didn't?

 

[*GG*]

Yes, Remeron is mirtazapine, sorry for the confusion.

GG

 

[xrayspex]

over the years I have been tried on most of the usual suspects, tricyclics, ssris, snris etc I have mcs and could never tolerate them and got bad problems from some of them, if I could get the dose low enough some helped a while like serzone for a year but then couldnt tolerate it anymore.

I kept playing with gabapentin the last year because was desperate and you can get it as a liquid and seemed promising when I could get dose small enough. I finally settled in this spring/summer on just one tiny liquid drop tht is less than 1/10 of 1 ml............crazy I know but it knocked back debilitating headaches by 85% or so and get me out of house more and working more...........however its unpredictable, some days it doesnt work how i want it to and other days just fine, i feel like one of the neuro patients in Awakenings, the film with Robin williams, i tune in normally brainwise sometimes and then its gone and I cant control it by changing dose.

I am not thrilled about it as a permanent solution but its a slightly lesser evil, I am worried that it seems to make me stupider in certain ways even on small dose but overall is helping me organize the bigger picture better but in moments I feel foggy. when it starts to wear off i wake up in mornings sometimes with leg cramps and i love to strech but if i stretch my legs before taking it i can get a killer cramp in my calf which never happened before i took gabapentin which worries me. it also makes my face puffy which doesnt thrill me either, i think its an allergen something in it to me, but in that low dose it allows helpful part to work and minimizes allergy part. I couldnt tolerate lyric few years ago headaches.

I thinik more cfs people should try minute doses like this but it hasnt been studied so people dont believe in it or understand it but anotehr female friend of mine taught me this in the 90s with tricyclics (cheney noticed that in his patients in the 90s with tricyclics he wrote about it back then) and also luvox, i had been rearende in a car and she brought me over a luvox and said just nibble off a dustsize piece and it worked, i had been in bed in horrible pain flare and i went to san franciso a month larter and walked all over, altho the luvo made me crabby and eventually caused brain fog, that was 15 years ago.

 

[helios]

My experience is like Jeffrez. When I first took Neurontin, I felt wonderful, like zero CFS. the effect only lasted about 10 days. I cant remember if I was on 300mg or 3x300mg. I then increased the dose, but it did not make a whole lot of difference, and I was wary of going up to big mg amounts even though I read where some people were on big dosages. For a while there I was going off and on the drug just to get that wondeful feeling of zero brain fog, confidence, motivation, improved cognition, desire, etc.
A few years later I read about the supposed new & improved version called Lyrica, and pestered my doctor to try it. Unfortunately it did not work for me like Neurontin did. It was however great for insomnia. When my script ran out I did not get any more though as it was expensive for me as I was getting it for non pain relief purposes.