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 I have never withdrawn from it completely but never had trouble reducing the dosage when possible.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?
 
You can actually get 25mg pregabalin tablets I know this because I couldn’t tolerate 75mg and asked for the lowest dose instead.
(In the end I stopped taking it regularly then stopped altogether because even at 25mg am and pm I had side effect of tremor)
 
I was just prescribed it for burning pain in feet. Just taken my first dose :eek:

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

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.
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I am on it and haven’t gained weight. I also take a much, much higher dosage then you were prescribed.
 
Hell..hath..no..fury... said:
Altered consciousness: its as though whatever level of consciousness
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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....

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

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

I put on a stone - in the first 6wks
:emoji_scream:

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.
 
InitialConditions said:
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.
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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.
 
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.
 
Moved posts
Jonathan Edwards said:
One reason for thinking this way is that flu-like symptoms can often be significantly relieved instantly by simple counter-stimuli. Overwhelming nausea can be relieved immediately by vomiting. A sense of oppressive heat can be relieved by a cold cloth on the forehead. I think these symptoms are ultimately neural and can be switched off in seconds, if only partially and temporarily, with other neural inputs. The same sort of thing applies to sleepiness and wakefulness (nucleus caeruleus and RAS).
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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.
 
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Arfmeister said:
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.
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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.
 
rapidboson said:
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.
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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
 
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