Poll: Have you been helped from gabapentin or pregabalin?

[stefanosstef]

My psychiatrist really insists that gabapentin will help me with neuroinflammation symptoms.Honestly he seems stubborn about it.I've got zero benefits, tried it for a couple of months at 600mg + 1200mg, he said it needs more time initially (after 20-30 days that we talked), then he said to up the dosage to 2500mg total.

I don't get it.Searching here I found gabapentin to help only a small minority out of a small sample, I haven't seen it in any protocol or study about me/cfs exept for pain management, which is the only symptom that I don't have (exept for migraines).

My neurologist said that I should quit it, that it makes no sense, the 1800mg is already high dosage and that 2 weeks are enough to judge it.He supported pramipexole or galantamine since I told him that they were successful in treating neuroinflammation symptoms.He didn't know of such use but he had no objections since both are drugs that are considered reasonably safe.
He said that he does not consider himself an expert on me/cfs, my country doesn't have one, but he says that he has seen it several times and that he believes he knows the disease.Very low ego and quite informative.
He told me a couple of things I didn't know, that my high CPK may be from me/cfs and that I shouldn't stay many hours with no food and eat something before going to bed.He was right, I haven't realized since then, when I stay without food for hours I get quite worse which improves greatly 10 minutes after eating.

I am hoping to get a picture from a bigger sample in here, about your experiences with gabapentin/pregabalin.Share your experiences if you have tried it.

 

[zzz]

Listen to your neurologist. There is no drug that works for everyone with ME/CFS, and gabapentin works for only a relatively small minority of people with this disease. Giving gabapentin a try can be worthwhile, but your neurologist is right - two weeks is plenty of time to see if it works. And the dose that you're on is rather high. Gabapentin can be addicting, especially at higher doses, and many people have suffered withdrawal effects when trying to go off it after being on a high dose for a while. After two weeks on a high dose with no results, there is essentially no chance that it is suddenly going to start helping you in a meaningful way, but there is a real risk of getting addicted to it if you continue it long term.

Getting a small sample of responses from people here is probably of limited use. The key is whether the drug works for you or not.

 

[stefanosstef]

The problem is the psychiatrist is a top professor in my country in psychopharmacology and the neurologist is just a good neurologist in my town.But I don't feel gabapentin is going to suddenly do something, when it has done absolutely nothing so far.Galantamine worked right away, on the 2nd day.
Family support is an issue now as they blindly trust the psychiatrist's opinion like it is a gospel and me trying to get well and take something effective am becoming someone who quits his treatment and doesn't really want to get well.Only I know how much am I fighting with this and how much strength I am forced to have psychologically, because I have no other option.I am alone in this.

 

[valentinelynx]

Gabapentin an pregabalin only help a small percentage of people with fibromyalgia. That Lyrica (pregabalin) was approved for FM gives doctors too much confidence that it must help. If I recall the numbers were something like half the people got 20% improvement. I wouldn't trust my memory for the numbers, but I do know it was a pathetic response. These drugs don't even help people with nerve pain from nerve root compression much, in my experience (working in a pain clinic). Where they do best is for diabetic neuropathy. Unfortunately diabetics are also the most likely to get side effects such as limb edema. And, if you don't even have pain, I don't see the point.

 

[dr. Arf]

It helps me sleep b
400 mg. Before sleep.
WakE up groggy, but you have deeper sleep, possibly in combo with sleeping pill.

 

[Springbok1988]

I take it for sleep. I normally wake up regularly throughout the night but I don’t when on gabapentin.

 

[Dubitat]

Gabapentin is commonly used for sleep in CFS and similar disorders. Lower doses can be used at night because tolerance builds differently when it isn't taken all day.

However, if your doctor is well respected, recommends this, and you're already a few weeks into a trial then it might be worth giving it a few more weeks before drawing any conclusions. It can take a month or two for your systems to stabilize and for the full therapeutic effects of the drug to manifest.

If I was in your position, I would mark my calendar for 2 months after the first dose and wait until then to evaluate the effectiveness. Many of these drugs require time to fully manifest their benefits (if any)

 

[Alvin2]

If you take enough Pregabalin or Gabapentin then you will stop complaining. That is perhaps the goal of the psychiatrist.
I don't know if those preposterous doses have even been tested in humans in a clinical trial and may not even be safe to consume.

 

[katabasis]

For me, gabapentin has been indispensable for treating the worst of my ME/CFS symptoms, though it doesn't seem to have any effect on the disease process per se. During PEM I would become incredibly irritable, hypersensitive (i.e. hyperacusis, etc.), and anxious. It only took me a couple days to judge the efficacy of gabapentin in reducing these symptoms. I also have SFN, which causes neuropathic pain for which gabapentin is known to be pretty effective.

I actually take a pretty low dose - most recently, I've managed on only 100-200 mg per day, as needed, usually at night, but there have been times where it's been 200-300 mg three times per day (600-900 mg total). I find that if I keep the dosage low it is more effective. I also take memantine, which should theoretically be synergistic with gabapentin's effects.

I think that you've used it for long enough to safely judge how effective it is for neuroinflammation. As you state, there are other options for treating this. I'd also look into memantine, huperzine A, and tropisetron (if you can find it). If it were me, I'd also drop that psychiatrist, but I have a low tolerance for know-it-all doctors.

 

[vision blue]

I dd t k ow about thus thread til @Pyrrhus mentioned it so I had started a new thread this morning witg a poll abd saying following:

‘Note first: please feel free to take the poll even if you have never tried gabapentin (or have but dont' have a comment)>

I have used a cream form of gapapentin but I suspect oral would be the same (if i could tolerate), so curious to hear about others experience. I found mine to be very notable. I take at bedtime and it causes me to sleep through the night with no awakenings from noise, electric sensations, dreams, etc. In addition, I realize only after it wore off (about 1 pm the next day). that I was free of many of my usual aches and pains. I also was not bothered by noise as much (though still sounded loud) and sort of felt "high", in a good way.

Note I'm talking about gapapentin the big pharma drug, not GABA, the neurotransmitter. In fact, studies apparently have found gabapentin does not alter GABA levels. According to the latest entry on wikipedia, it reduces activity in "a subset of calcium channels". Yes, i know wikipedia not a great source, but there's about a dozen pubmed searches i have to do that are ahead of this one. Until recently though, i remember reading knowing really knows how gabapentin works.

The reason i asked for it was because of the misfiring nerves i get that make me feel like i've been shocked with a defibrillator or someone is using my head in a slingshot or pinball machine. It did help with that overnight, but then came the positive side effects as well.

an interesting tidbit (again, just from wikipedia) is that only 30-40 percent experience significant relief which is why I added the quick poll. Also interesting, they claim studies have not found any addictive quality (dependence yes) because it supposedly produces no "reward". Certainly not true for me.

i'm only using it occasionally - i save for emergencies - because i am concerned that anything that makes me feel that good i will quickly adapt to and i will need more and more and more just to get some relief and then at that point i'll have a full blown dependence and won't ever be able to get off it (whilst no longer experiencing the benefits having long ago adapted/habituated to its positive benefits.

Curious what experience has been like for others”