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Restless Legs Syndrome

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restless legs

Hublot profile image
15 Replies

I’m coming to the end of my first week on gabapentin, it’s been very hard sleepless week, from coming off pramapexole and onto gabapentin, this last week I’ve been taking 1 tablet a couple of hours before bed, from tomorrow evening it’s 2 tablets before bed then the following week 3 tablets, are these tablets all to be taken at the same time together, the 1 then the 2 then the 3

I’m absolutely exhausted, I’m lucky if I’m getting three hours sleep this past week.

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Hublot profile image
Hublot
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15 Replies
Nikos64 profile image
Nikos64

I too was on pramipexole and was switched to gabapentin. I acknowledge that everyone is different. For me gabapentin was a useless drug. It made me dizzy and forgetful. My advice is to find some posts from Sue Johnson who details treatment options. Opioids offer the most relief and I’m on a strong opioid. But please consider them as your absolute LAST resort. Finally, please make sure you see a doctor that understands RLS. Few doctors do. Sleep specialists are your best bet.

I hope you feel better soon! I’ve been there and know how debilitating this affliction is.

Madlegs1 profile image
Madlegs1

Coming of Pramipexol takes weeks and months. Gabapentin takes at least 3 weeks to start being effective.

You will need to increase the dose gradually. Sue will elaborate.

Do NOT take any magnesium product within 3 hours of Gabapentin.

Good luck.

Joolsg profile image
Joolsg

A reminder to those going through dopamine agonist withdrawal that it is HELLISH and you'll get little to no sleep for weeks. This is the info sheet Johns Hopkins give to patients and I took a photo from a post on another forum.As you increase the gabapentin, it should ease off. It's why we suggest starting gabapentin or pregabalin 4 weeks before you drop the last dose of Pramipexole or Ropinirole.

Gabapentin takes 3 weeks at full dose to be effective.

What you're experiencing is normal withdrawal. It does get better. Every month away from Pramipexole , your dopamine receptors will continue to settle and hopefully heal.

Stay strong.

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Nikos64 profile image
Nikos64 in reply to Joolsg

Great post!!

Avart profile image
Avart in reply to Joolsg

Thank you for posting this! Can you post the other pages if available or provide a link to the forum where it was posted? It sounds like they are NOT promoting overlapping with Gabapentin?!??

Joolsg profile image
Joolsg in reply to Avart

Sadly, only the first page was posted. I honestly can't remember where I found it. I think via my sister's FaceBook account. She follows RLS groups on FB and alerts me to anything interesting. It was over 2 years ago.Johns Hopkins advocate a 3 week fast withdrawal from Ropinirole/Pramipexole with zero help from gabapentin/pregabalin/opioids then a 2 week brutal drug free period.

Only after that 2 weeks withdrawal do they then introduce different meds.

They believe that is the only way to see whether you can be free of meds. To ascertain your baseline RLS.

in reply to Joolsg

Hi Jools, how are YOU feeling. It’s nice to know how you’re doing too. I know RLS is under control, but last time we spoke you had to stop the immune modulator plus in another post you mentioned long Covid. Are the substances you’re taking; Symprove, Kimchi, Berberine…providing any relief from fatigue and general malaise?

Joolsg profile image
Joolsg in reply to

I'm actually doing very well thankyou.'m still off my B cell depleting MS drug. The Symprove and vitamins are definitely helping as I haven't had an MS attack since stopping the medication. I'm doing really well with RLS, so the sleep is helping my MS. And I can have catnaps whenever needed ( RLS never wakes me anymore!).

The Nattokinase, alpha lipoic acid, anti histamines and nightly lymphatic drainage massage are all helping the long Covid blocked sinuses. The pregabalin is keeping the heart palpitations below 100. So I'm doing well. Just hope I can avoid catching Covid again. I use Enovid ( a nasal spray from IsraePharm) which is supposed to prevent the virus entering the nasal passages.

in reply to Joolsg

Bravo! Good job! “Things that happen to you, happen for you.” Or something like that. Maybe no longer being able to use immunotherapy wasn’t such a bad thing? How much berberine do you take and when?

Is 100 your heart rate? I never heard a number attributed to palpitations? Very interesting about the nasal spray. I know the info you provided will help others in a similar situation.

Joolsg profile image
Joolsg in reply to

Actually berberine is the one thing I don't take. You could be right on immuno suppressants. As we age, our immune system dampens naturally, so hopefully my MS will be less active.My resting heart rate is 50 - 52. So anything above 65 is a shock to me. When I first had Covid, it shot up to 155 sitting down. Horrible. So when it shoots to 100 from 52 sitting down, I feel quite ill. Hopefully, as I try to clear out the virus, the HR will stabilise more and stay below 80.

Zedz profile image
Zedz

hang in there took a week or 2 for me. Take all at once

Hublot profile image
Hublot in reply to Zedz

Thank you for your positive reply if helps.

Linnnie profile image
Linnnie

I’m on gabapentin and I need to take it three or four hours before bed. They never discussed that with me so it was trial and error. If I forget to take it on time, I’m bothered by it while in bed until it kicks in. So now if I’m late taking it I just stay up later to hit that four hour mark.

“Gabapentin reaches its peak concentration in your body about 8 hours after you take it, Dr. Arora says. “But the action may start even within 2 hours after you take it.” It can take about 2 weeks for the full effects of gabapentin to kick in.”

Hublot profile image
Hublot in reply to Linnnie

Thank you, I’ve been taking it about 7pm will see how this works, so far this week has been a lot better, last week I sleept in spare room to give my other half a decent night sleep, this week it’s a bit half and half, hopefully getting there.

SueJohnson profile image
SueJohnson in reply to Linnnie

Gabapentin peak plasma 3 to 4 hours (Https://pubmed.ncbi.nlm.nih.gov/20818832), another said 3 hours. Mayo Updated Algorithm on RLS said 2 hours.

It is advised to take it 1 to 2 hours before bed.

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