Anti-convulsants - Pregabalin and Gabapentin

Anyone got any experience of withdrawing from pregabalin? I have been on 75mg for anxiety morning and night (150 a day) for four years. I am now severe and think the medication might be causing me more brain fog and fatigue. Plus I am not sure it is of any benefit anymore.

Conversely I am a little afraid that it may be masking my severity and sound sensitivity etc might increase without it. I plan to taper if it do it. Am hopefully starting pots meds soon and feel that I would prefer not to be on this too if possible.

 

I've been taking it for 4yrs for headaches. I have never withdrawn from it completely but never had trouble reducing the dosage when possible.

There should be a Pregabailn solution/drops as well. Maybe you can use that for smaller steps if necessary?

 

I was just prescribed it for burning pain in feet. Just taken my first dose

Been given 25mg - 1 at night for 2 wks, then 1 in morning also - so 50mg a day

Am most afraid of the weight gain/hunger being mainly house/bedbound its a real struggle keeping weight down. Dont want to face a choice of reducing my energy budget because i carrying around extra weight, or being in pain unable to sleep every night.

Would love to hear even one person say they on it & not gained weight, this is really worrying me.

 

I am on it and haven’t gained weight. I also take a much, much higher dosage then you were prescribed.

 

Joy.

Thank you Charles.

I hope some other people will also say the same

 

yes. I feel completely dissociated from myself, i cant feel any feelings. In some ways its pleasant as i feel no anxiety, but then its unhelpful, because things that i need to feel sufficient anxiety about to guide my behaviour, such as speaking to someone about something important but which would be a bit difficult... i now feel 'not bothered' about, I have become 'it'll be ok' in my thinking, about things that actually may not be ok if i dont do something about it.

i have lost all sense of urgency, until just before my evening dose when i suddenly snap back in & get disturbed by trhings & think 'right i'll get on with that first thing tomorrow'. but then by the time tomorrow comes i am drugged up again & i dont do it.

I feel like i smoked a massive joint, but without the giggling.

The brain fog is immense, PEM levels when well rested. My feet burn a little less but i am not functioning well.
plus....

We upped my dose every 2 wks... now on 75 twice a day.

I put on a stone - in the first 6wks


A STONE! 7 kilos

stayed stable over last 2wks but oh my, this is not good. But its only between the hours of 10pm & midnight that i even care... when my daytime dose wears off & before the 'bedtime' one kicks in.

I have a call scheduled with pharmacist next wk so will see what she says. She's also put me on a statin, which appears to be making the stoned feeling even worse!

 

Just an aside on Lyrica. I take 450 mg/day, and it helps immensely with the pervasive sensory sensitivities accompanying my presentation. It also helps some with the peripheral neuropathy.

Again, this is an N=1 case, and unlike a scuba diving denizen of the deep, I will not generalize. I just wanted to add my experience to the thread.

 

Can you expand on this? What symptoms specifically, and how does it help? I was prescribed this early in my illness but never took it.

 

Like many patients, I find myself unusually sensitive to sensory phenomena like light, touch, sound, etc. I also deal with extensive peripheral neuropathy in my face, eyes, hands, and feet.

I have found a reduction in these symptoms associated with Pregabalin usage.

 

This rather worrying-sounding report was the front page of today's METRO:

Why is Pregabalin found in a third of all drug-related deaths? | UK News | Metro News

Gabapentin is also mentioned, to a lesser extent.

 

A few years ago I was prescribed Lyrica but I don't recall exactly what for now. It was probably for peripheral neuropathy and probably to shut me up because my GP didn't believe I had it at the time. (That changed recently!)

I didn't get past first base. For three days I took half a 25mg tablet and I felt a bit more relaxed than usual but otherwise nothing much so I progressed to a whole tablet and almost immediately my anxiety level went through the roof. I stuck it out for a few days then went back to half a tablet for several more days but the anxiety remained. I tried a few more times on and off but the anxiety was always off the charts. I mentioned to my doctor that I had read a few horror stories about people becoming addicted and she had never heard about that.

Much later I came across a forum for people trying to come off it. These people were really desperate to be free of it and were having a huge amount of trouble weaning themselves off it. Some managed to get from very high doses down to 25mg but couldn't get any further. Their stories were heart-breaking to read. I felt relieved it hadn't suited me.

 

I am trapped on pregablin (75mg X2 daily) after five years. I went on it for 'anxiety' (actually ME related symptoms) and planned to be on it for a year. This was 2019. Then covid hit and my ME got much worse and I don't dare try to come off. My partner is also on it and she had a horrible time tapering from 300 to 150mg. And an major crash when she tried to taper beyond that a year or so ago (she has moderate ME).

I know it is affecting my brain fog. I would give anything to go off it for a month without side effects so I could know if I benefit from it or if (as I suspect) it is making things worse.

I do have a lot of neuropathy type symptoms though. Nothing diagnosed as yet.

Just another aspect of the hell I've trapped myself in.

 

https://twitter.com/user/status/1834249837652398571


Pregabalin

 

Moved posts

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 need to dive into the mechanism again, but for me Pregabalin’s effect or:
- indirectly lowering calcium input into the neurotransmitters immediately affects PEM symptoms - within an hour
- which would confirm that - in my case - certain ‘neuro-immune signaling’ can be temporary turned down within an 1 hour.

 

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.

 

That is a tricky question. My assumption it’s both. Also from talking to other patients taking the same 1x / week protocol.
(And e.g. Clonazepam does not do this to me)

Do you take it weekly or daily?

The whole topic of the Role of CNS / neurotransmitter targetting drugs in ME / PEM deserves a separate thread.
- and I don’t want to sidetrack this thread