Pregabalin - hallucinations! Has anyone else experienced them?

[hoooray]

Has anyone also got any tips or med suggestions for weight gain? Thank you

[Joolsg]

Pregabalin caused dizziness, nausea, double vision, leg swelling & weight gain for me but most of these reduced after 3months.

I never suffered hallucinations but it is listed as a rare side effect

bmcpharmacoltoxicol.biomedc...

I suspect it isn’t that rare because most people and doctors fail to report side effects. Report it via the Yellow Card scheme in the UK.

yellowcard.mhra.gov.uk/

I stopped pregabalin in November 2020 after 3 years as I didn’t think it was helpful & I think it was causing augmentation ( RLS had started on my arms again) and I was also on Oxycontin.

I have lost a little weight since coming off pregabalin but have to admit the other 4kg was caused by lockdown boredom!

What dose are you on & at what time do you take it?

[hoooray in reply to Joolsg]

Hi, thanks for your great reply, sorry it's taken so long to reply. I've only just started Pregabalin having been on Gabapentin for a fair amount of time. My Doctor and surgery pharmacist want me to increase the amount of Tramadol, but I'm insisting upon keeping with zapain as it doesn't make me 'stoned'!

My doctor prescribed 600mg a day, the first night I had really vivid dreams and woke up to hallucinations (pink fairies dancing in front of me!!!). Had I been warned I might not have been so alarmed! I have since spoken with the dr and have the 300mg and 25mg and am getting myself up to 600mg a day gradually.

I also wasn't expecting the serious hunger pain, the desire to eat was just so overwhelming and still is. I make up little boxes of salad to deal with that so that I don't put on too much weight, I have however noticed some water retention - I will talk to my pharmacist to see what I can do about it.

Moving on - I have just spoken with the surgery pharmacist who seems to think that I can simply move onto 300mg x 2 daily with painkillers (currently zapain as I really dont like tramadol).

Here's another question. How is everyone managing to cope with tramadol without feeling drowsy and the dry mouth in the morning - any suggestions, thanks!

[Joolsg in reply to hoooray]

600mg of pregabalin is twice the maximum recommended dose so I’m not surprised you were hallucinating!

I suggest you slowly reduce down to 300mg and only take it at night. The side effects will then occur while you’re asleep and won’t last too long in the morning after you’ve woken up.

Zapain is codeine with paracetamol but maybe you could switch to plain codeine phosphate to avoid stomach issues caused by paracetamol.

[hoooray in reply to Joolsg]

Hi. I had a telephone conversation with a different GP yesterday who was super surprised that I'd been prescribed 600mg. So currently I'm taking 300mg at night (finally getting some sleep), and increments of 100mg during the day - with the aim of eventually taking 600mg a day (we'll see!).

I used to take codeine without the paracetamol years ago, however having moved back to UK my GP prescribed Zapain and tramadol. It has been worrying me for sometime that the huge amount of paracetamol is not good for me (liver etc...). Thank you for telling me about codeine phosphate, I'll look into it and have a chat with my dr.

Have a great Christmas!

[Munroist in reply to Joolsg]

Hi Joolsg, I'm a little confused by your comments on pregabalin dosing. I was prescribed it myself and was on 300mg a day which my doctor described as a lowish dose. At the time I understood that the maximum was about 900mg a day. I am sure I've seen other posts from contributors such as Manerva which also indicate that 900mg is an acceptable dose, if high. I've just checked the NHS website and they say "The usual dose of pregabalin is between 150mg and 600mg a day split into 2 or 3 separate doses." which doesn't align with what you are saying. People should always get recommendation from a health professional rather than relying on forums no matter how well informed, but I'm concerned that this message is not accurate. If I'm wrong I apologise in advance.

[Joolsg in reply to Munroist]

I understand your reluctance to accept any advice other than from doctors and neurologists. However, if we relied on their professional advice here in the UK, we’d be in a terrible position.

Doctors have prescribed 12mg of Ropinirole to patients on here and have told them there’s no such thing as Augmentation. They also tell patients to stop Ropinirole and pramipexole cold turkey which can be fatal. I have yet to meet a GP or neurologist who is very knowledgeable about RLS. My own GP thought RLS was leg pains caused by ‘old age’ & my neurologist prescribed Amitriptyline which sent my RLS into overdrive.

I try to rely on research papers and medical textbooks written by RLS experts in the USA . Clinical Management of RLS by Dr. Buchfuhrer et al refers to an average dose of 305 mg of pregabalin for RLS (p.197)

Dr Buchfuhrer advised me to take pregabalin only at night to avoid daytime dizziness and double vision and sedation.

However, if you wish to rely only on ‘professional’ advice, this is the wrong forum for you.

I will continue to advise RLS sufferers to avoid anti depressants and anti histamines as well even though most neurologists in the UK keep prescribing them as a solution to our disease.

All the advice I have received on here from knowledgeable RLS sufferers has been far superior to any help or advice I have ever received from a doctor or neurologist. Without it, I would still be suffering horrendous augmentation on Ropinirole.

Pregabalin is prescribed off licence for RLS in the UK - and doctors are not familiar with RLS so tend to prescribe doses they might prescribe for nerve pain.

sciencedaily.com/releases/2...

900 mg is the average dose for Gabapentin- a similar alpha2delta ligand.

Merry Christmas Munroist.

[hoooray in reply to Joolsg]

Hi, blimey - I understand. Talking through things with those who understand really does help. I have now found this forum so helpful.

[Munroist in reply to Joolsg]

Hi Joolsg, thanks for the response. I like to use all the sources of information available to me and the question was really about trying to reconcile conflicting views I've seen on this forum as well as in the medical establishment.

You mention many other drugs in your reply but my question was only about pregabalin. I don't recommend unquestioning acceptance of what doctors say, in fact the opposite but it it doesn't mean they are always wrong either.

Unfortunately I can't find any of the other posts where dosages higher than 300mg are mentioned but I haven't gone through them all. I may have pregabalin and gabapentin mixed up although I don't think so. I also believe that that there are may be different ranges of dose depending on the issue the pregabalin is prescribed for as you say so maybe that's what I've seen.

[Munroist in reply to Munroist]

And .. having done a quick scan of various dosage regimes and recommendations I agree that 300mg seems to be the average, not a low dose, with 600mg being mentioned but not recommended due to side effects and minimal if any improvement in effect. Sorry to have questioned that .. I genuinely though it was different but I should have checked first.

[Joolsg in reply to Munroist]

That’s not a problem. I hope you have a restful day & a peaceful RLS free night.

Seasons greetings.

[WideBody in reply to Munroist]

Munroist, I think you are confusing Pregabalin and Gabapentin. Gabapentin absorbs poorly and I started at 900mg and went to 1800mg (6 * 300mg Pills).

This got to be too much.

Pregabalin absorbs better, I take two 150mg. (I am big person) one at 2pm and 1 at 6pm. It helps. 300mg, is a LOT! I can't imagine 600mg of pregabalin, let alone the very first night!

Some of the worst advise I have been given have been from Doctors and Neurologists. I stick with papers from the experts, mainly 3 web sites in the U.S. John Hopkins Restless Leg Foundation, Mayo Clinic and Dr. Buchfurer. Find the papers, read them, print them off take them to your GP and tell them this is what you want to do. Then my doctor was better able to help me. We have a much better relationship now.

[hoooray in reply to WideBody]

Brilliant - become your own advocate... My docs on the whole do not seem to know a lot.