Positive Response with Pregabalin

[silkusmaximus]

I read the "Don’t Light the Fuse of Restless Legs" article, like many here - and decided to do something about getting off of Ropinirole.

I'm 43, diagnosed when I was about 28 or so, started on Pramipexole then onto Ropinorole about 6 years ago.

Both medications worked fine for the RLS symptoms but the insomnia became unbearable - I tried Gabapentin a few years back and the side effects were horrific - after around 7 days I felt like I was constantly out of breath - it dropped my oxygen levels substantially.

I assumed that that mean that Pregabalin would affect me the similarly so stayed away from it until around 2 months ago. Started on a low dose, 100mg, worked for around a week then I seemed to adapt and the positive effects subsided. So I went up to 200mg and now I'm on 300mg and have stayed on this dose and no side affects whatsoever and my sleeping has improved so much I'm a different person. It's literally changed my life.

Most importantly I have managed to taper my Ropinorole from 0.75mg down to 0.30mg with no sensation in my feet. The awful rebound insomnia has much improved and I'm really hopeful that I can ditch the Ropinirole for good by Christmas. That drug would knock me out for sure but the insomnia that followed ruined me totally, I would wake up at around 4am wide awake, feeling like I'd had 10 mins sleep then be up the rest of the night unless I took something else to knock me out.

The reason I'm writing this though is to let you know that if you did try Gabapentin and it didn't work out for you - do give Pregabilin a try - they do not work the same way! I just wish I knew this and hadn't wasted the last 3 years or so but I was too worried it would affect me the way Gabapentin did. I would actually say that it's probably better to try Pregabalin first even if the Dr. tells you the reverse - from my limited knowledge I think Gabapentin has more serious side effects.

I will post updates occasionally though and if you suffer from chronic insomnia as well as RLS, they're not two separate conditions, this is what took me so long to understand so I'm hoping that this saves at least one other person from making the same mistake.

Anthony

[Madlegs1]

Thank you for the update.

Important for others to know.

👍🍀

[SueJohnson]

That's great! so pleased for you.

[amrob123]

Your experience of pregabalin / gabapentin is very interesting. Thanks for sharing.

I'm not sure that gabapentin has more serious side effects than pregabalin though. I think that individual responses vary quite significantly. Plus, gabapentin tends to be used far more in pediatric populations than pregabalin which suggests that the side effects are lesser,

I'm happy for your success with the new regimen.

[Retro_bob]

hello

im also a long time RLS sufferer (25ys or more) not had it extreme like some but felt bad enough at times. i also went from gabapentin to pregabalin and before that pramipexole, the first two worked for a while before losing effectivness (and luckily i got of prami pretty quick but even then had unpleasant withdrawal effects, even from just 0.25gms)

anyway ive been on Pregabalin for 18 months or more now 300mg just at night, not fully stopped it but takes the edge of and if needs be I take 1 over the counter paracetamol and codeine pain killer.

loath to up the Pregabalin dose until i really need too but that combination general does the trick for a reasonable nights sleep

[ucdailoi-no-1]

Ive started on Pregabalin (amended to Gabepentin) about a week ago. The insomnia is terrible. I will fall asleep sitting up, go to bed sleep for an hour then awake again. That goes on all night.

I am awoken by painful feet or the need to move them. I go down to my workshop and tinker. The walk down the 15 stairs helps for a while, then it starts all over again.

I am up to 800mg a day so far

[silkusmaximus in reply to ucdailoi-no-1]

Are you still on a dopamine agonist?

[ucdailoi-no-1 in reply to silkusmaximus]

No.. I think that might have added to the problem as my GP stopped them completely. I went cold turkey. That led to hallucinations and all sorts of bizarre night/day feelings.

[silkusmaximus in reply to ucdailoi-no-1]

That's crazy your GP did that. I know they don't really know what they're doing with RLS and medication but even their basic training tells them to taper off.

To put into perspective. I'm on Pregabalin @ 300mg and I've spent 2 months reducing my Ropinirole from 0.75mg down to 0.25mg (that dose last night for the first time.)

Possibly slower than I need to but I've been on this stuff for over a decade and my brain has adapted to it. I would maybe take off 0.10mg every week at the most. Don't rush it. Also, the two drugs don't conflict with each other so don't worry about "doubling up" as such.

[SueJohnson in reply to ucdailoi-no-1]

800 mg is way past the 600 mg absolute maximum for pregabalin. Are you sure you don't mean 80 mg? If not go back down. Are you still off sifrol cold turkey. If so those withdrawal symptoms are probably from that. Pregabalin should help you sleep not cause insomnia. And if your doctor put you on that much pregabalin you need to switch doctors.

[ucdailoi-no-1 in reply to SueJohnson]

Sorry Sue... I meant Gapentin. I have hardly 'been with it' since the sudden change from Sifrol to now Gapentin. The dreadful period of not sleeping, hallucinating and zombie state I have been in didnt look like changing. Last night, faced with another dreadful night I took 5mg of Diazapam just so I would not wake every hour and it worked. I hope to have reset the whole pattern.. In fact after getting up this morning, I went back and slept for another hour..

Now back to the Gapentin.. My GP tells me it is safe up to 1800mg a day. I am currently on around 800 a day... Surely I should be noticing some benefit? I ask because as I just mentioned, I have been on a terrible trip and am becoming desperate to see some sign of change..

I see my GP tomorrow, is there anything I should be mentioning to him as a way to help move things forward for myself.. I get the impression that he doesnt know much outside the accepted standard..

[SueJohnson in reply to ucdailoi-no-1]

Yes Gabapentin is safe up to 3600 mg but after 1800 you would switch over to pregabalin.

You just came off a DA cold turkey so that is why your symptoms are so bad. Gabapentin takes 3 weeks to be fully effective and won't help much until you have been off sifrol and your symptoms have settled which may take awhile since you came off it cold turkey. After that you can increase it by 100 mg every couple of days until it controls your symptoms.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you are taking more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

[ucdailoi-no-1 in reply to SueJohnson]

Thank you, Sue... You have given me something the medical profession has not done, and that is confidence..

[Yorkie111]

Thanks for suggesting that RLS and insomnia are not necessarily two separate conditions. I am hoping when I am off pramipexole and on pregablin that the insomnia will get better. The odd thing for me is even when I get very little sleep for several nights running, I am not tired during the day.