Anti-convulsants - Pregabalin and Gabapentin

[JemPD]

As an anecdote: I always have wondered why taking a high dosage of Pregabalin 1x/week (at night) is able to lower all my ME-symptoms immediately within 1 hour - for about 12-15 hours.
- this includes PEM symptoms flu-like symptoms, brain fog, fatigue, orthostatic intolerance, insomnia, etc
(I am very severe so It’s nothing earth-shaking, but still makes a big difference)

I have seen the same effect of pregabalin or gabapentin. I am wondering though if it's just a higher dose making you feel good/high and masking symptoms or whether it's actually temporarily "healing" the symptoms.

Interesting because Gabapentin 700 late afternoon & 1200 at night (for something else), makes me feel 'better than i have done all day' in terms of flu-like sensetions - ie bodily. But the fog, the drunkeness effect is terrible, very intense. & it also makes me think i can do things i cant actually do. Pacing is much harder to do now i'm on it. I do all kinds of things during the evening/night that i wonder how i could have been so stupid the next day!

 

[Arfmeister]

Interesting because Pacing is much harder to do now i'm on it. I do all kinds of things during the evening/night that i wonder how i could have been so stupid the next day!

Yes, that’s why I never take it during the day.
Best to take it 1 hour before sleep. Don’t get active.

 

[JemPD]

Yes thanks that makes sense but I can’t take it at that time unfortunately because the pain relief takes 3hrs to kick in so I have to take it 9pm,

like I said it makes me feel drunk making pacing or indeed any sensible decision/self discipline, very difficult and given just reading/ listening to a story is often too much exertion, it’s pretty challenging when both foggy & stoned!

it’s does impact the pain though (not ME/CFS related) without which sleep would be impossible

 

[Kiristar]

I was prescribed this for central pain following major abdominal surgery (which also progressed my ME to severe long stor)

I got a great deal of alleviation of my ME symptoms, especially if skin tingling, improved sleep early on and mood lift too. But I've not had problems pacing myself on it in the way I have had on lda and ldn which I both find very activating.

I always thought the benefit was because it suppressed the central nervous system.

I did however find I kept needing more for the same benefit so stabilised at 125 twice a day as I did want to increase any more. At that I lost my sleep benefits. With hindsight I wish I had stayed low and tried to cycle on and off but I was in a bad way with pain at the time.

Fastforward and it still works but the downside is I am pretty sure I am now addicted . One time I tried to reduce by the 25mg still unaware of it's reputation I got major rebound,.my ME relapsed and quickly had to restart. If I miss a dose I get major symptoms returning within 24hrs.

So I think it's still helping but wish I'd been better informed about its addictive properties. that said I'd probably have done exactly the same thing - at the time it was a absolute lifeline and like a miracle med as I was in extreme pain and literally all other medication did not work.

So I kind of alternate between feeling it's just the right med for me and I did what I needed to do, and wishing I had stayed on a lower dose and cycled it or was stable enough to reduce gradually but at the end of the day so far as I can tell it works very well for me. It was a definite life saver when I started as nothing else had worked or helped so I am very grateful for that being at severe grade.

So I am too nervous to try to reduce the dose to validate if it's still helping as significantly. I've thought about trying to titer my dose down a bit using the liquid but I've just never been stable enough to have a conversation about it with my Dr.