Pregabalin for post-ICU neuropathy

[Gooddaysunshine]

hello, I was wondering if anyone else has been prescribed this drug for neuropathic pain in hands and feet after a long ICU stay?

As I have been home 2.5 years but still have neuropathic pain (it is not getting worse but not greatly improving) my neurologist suggested I try this medication.

This I did a couple of days ago, but have just again suffered a sleepless night (hence the early morning post) of terrible nightmares, on a par with anything in my coma dreams.

I also feel fuzzy headed during the day. I know from internet searching that there are various warnings and controls around pregabalin.

Does anyone else have experience of being prescribed it for post-ICU neuropathy?

[Sepsur]

I took vitamin b1,b6 & b12 along with magnesium - this combination seemed to help.

I hope the pregabalin works for you - apparently it interrupts the ‘pain’ message getting to your brain.

[Gooddaysunshine in reply to Sepsur]

Thanks, if Pregabalin does not work I will try your vitamins suggestion.

[Sepsur in reply to Gooddaysunshine]

I’d always check with your docs - these were recommended by medical staff which I then chased up with my medical team

[downthemoor]

I've decided to suffer all the pains and discomfort I'm left with rather than take any more drugs having read my ICU notes showing all I was given leaving me with many issues. My heart is still struggling from stuff I was given(and cardiologist says I shouldn't have been given) I know this isn't helpful for you but in a way I feel at least I'm not constantly looking at more side effects. The same with sleep medication ...including melatonin . I'm going to give b12 a go for the fogginess...lots of good results for people with this . I'll keep you posted!

[Gooddaysunshine in reply to downthemoor]

Thanks, yes side effects are rife from our many ICU drugs. Pregabalin is making me really foggy headed.

I have a review with an NHS pharmacist in a few weeks’ time and will discuss whether to stay on it or not with them.

[BigH63]

Hi Gooddaysunshine.

I to have been suffering with Neuropraxia in my left arm since February when I was discharged. I prescribed Gabapentin and Tramadol for my pain but it really only scratched the surface I to like Downthemoor decided after two months that I was taking to many drugs and masking the pain is not good as you don’t know what other damage is happening, plus side affects.

I like Downthemoor also was given drugs for my heart and I’m looking to come off them asap, and sleeping pills are not good. I still have pain and numbness in that arm and this week going for another MRI to see what’s going on as my right arm is giving me pain. I am trying to be drug free this us the way forward for me, there are lots of other vitamins and homeopathic meds if needed.

Good luck with getting pain free.

[SJKK]

Hiya - I’ve been on pregabalin for 3 years to manage what I like to call ‘fire feet’. Thankfully I don’t seem to have any side effects and it makes my neuropathy tolerable. Sometimes it can take a few weeks for your body to adjust to a new med and side effects will eventually resolve. But definitely raise your concerns with your treating team if they don’t resolve - medication isn’t a ‘one size fits all’ thing - it’s about finding what works best for you.

[Misterpaulwood]

Tried pregabalin had the same issues, switched to gabapentin and everything is fine.No side effects, they help...

Paul at the Steampacket Inn Knottingley 👍

[Gooddaysunshine in reply to Misterpaulwood]

Thanks Paul, all in the melting pot for the next couple of weeks, but Gabapentin is noted for future discussions.

[Ta-thanx]

Hi My guess is they aren't for you and you should mention this to your doctor.

I wouldn't wish those types of dreams on to anyone.

[Gooddaysunshine in reply to Ta-thanx]

Thanks. Was at docs yesterday and we have cut down to very minimum dose to see if that is a compromise of numbing the pain somewhat but without the nightmares.

If there is no change I shall stop taking the tablets.

[charliesdad]

Hi Pregabalin is not administered that often, but my specialist recommended increasing the drug in 50mg steps until we got to 300mg morning and evening. What dose are you on?