Hitting the brick wall

[careerSquirrel]

Hi RLS survivors

My Pregabalin honeymoon is over! I am now waking up constantly in the night and whilst I don’t have RLS 🙏 I am experiencing pain in my hip and back.

I also have Fibromyalgia so I guess I can thank it for reminding me

I guess my question to you all is “do I increase my Pregabalin dosage to 150mg?”

I realise many of you are on much higher dosage but I don’t want to remain on meds forever and thought if I kept it low, I could wean myself off.

I now, however, don’t notice any benefit of taking it.

Still taking iron supplements and waiting for sleep clinic to get back to me.

[SueJohnson]

Yes I would increase the pregabalin although the hip and back pain probably won't be improved. I( would see your doctor for that and after that is sorted out you can slowly reduce the pregabalin to what you are on now. In fact if increasing it by 25 to 50 mg doesn't help, you can immediately drop back to what you are on now without having to wean off it.

[Joolsg]

Yes I would increase. Then monitor the results.

Withdrawal from pregabalin ,if done very slowly, doesn't result in horrendous symptoms like with dopamine agonists.I reduced from 150mg a few years ago and reduced by 6.25mg every 2 weeks (probably too slow but I didn't want withdrawal symptoms). I had no withdrawal symptoms.

[Moonwalker1967]

I had to increase as well. No other option. I am now on 200 mg.

[careerSquirrel in reply to Moonwalker1967]

Thank you for reply.

Did you increase slowly? Is this medication something that is going to keep increasing? I’m really scared.

I slept from 11.30-4.26am -woke briefly and went back to sleep until 8am. When I wake I HAVE to get up and move. I cannot just toss and turn!! Does this sound familiar??

[SueJohnson in reply to careerSquirrel]

You don't have to keep increasing it. Once you find what works for you it may be years before you have to increase it and then just by 25 mg and that is probably because one is getting older and RLS tends to get worse as we age.

[Moonwalker1967]

Hi,Yes, my neurologist told me to increase slowly, which I did. I have a lot of side effects, like balance issues, twitching toes and grinding teeth. Not to forget hairloss!

I often kick myself awake and yes, need to get up to walk or eat a chocolate bar, to get my mind of it.

I hope the above helps.

PS: I sleep alone.

[Munroist]

It would be great to get off meds and manage RLS differently, but for some people that's not an option, or maybe it's too difficult to find the combination of dietary and other changes required.

Pregabalin might help you at higher doses and I don't think you have anything to lose by trying it as its not difficult in my experience to come back off it again and has no lasting effects as far as I'm aware. If the side effects of pregabalin are too much or if it doesn't work then you can come back off it again.

If it works at high doses then you can make a choice about better sleep vs the side effects if any. I quite understand the reluctance to stay on it or any medication, but if it helped me sleep (which it didn't seem to even at 300mg) I would say the balance was probably worth it.

[careerSquirrel in reply to Munroist]

Thank you Munroist