Uncontrolled rls

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Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Uncontrolled rls

Post by Skippy »

I took mirapex for many years but I'm glad to say I am off it now. However, I still can't find anything that really helps enough. I take 800 mg. gabapentin and hydrocodone 7.5 at bedtime. It helps for a few hours but then I'm awake the rest of the night. I have tried several different sleeping pills along with that but they all make the rls worse. Are all sleeping pills like that? I just don't know what else to try.

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Uncontrolled rls

Post by ViewsAskew »

Can you take more gabapentin? While 900 mg is the max single dose, maybe you need to take one dose around 7 PM (just guess when your symptoms start) and another right before bed, or when you first awaken.

Another option is to try one of the other similar drugs, specifically gabapentin encarbil. It's metabolized differently and works much better for some people.

Sleeping pills never make RLS better. They might help us sleep through mild symptoms, but mostly they overcome other wakefulness problems.

If gabapentin encarbil doesn't work, then you may have to consider opioids.

What does your doctor suggest?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: Uncontrolled rls

Post by Skippy »

Thank you for your reply. My insurance does not cover the encarbil. My Dr. will not prescribe opioids. I will ask Dr. when I go again, about taking more gabapentin. I would really like to find another Dr. but I don't know another one that would do any differently. My Dr. is a neuro but I don't think she is too concerned about rls. I think she doesn't like it that I won't take the mirapex any more. I had terrible augmentation with it, so at least I am not having daytime rls anymore. I think the idea of the sleeping pills is that once I get to sleep maybe they would keep me from waking.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Uncontrolled rls

Post by JimmyLegs44 »

Skippy wrote:I think she doesn't like it that I won't take the mirapex any more.

It's so frustrating that so many doctors are still so clueless about augmentation.

I am in a similar situation. I took Mirapex for many years, until last December when I was finally able to get off it. I've been taking Lyrica, which is in the same class as gabapentin and Horizant (gabapentin enacarbil). Like Horizant, it is more expensive than gabapentin, but supposedly better absorbed by the body and thus more effective. I've personally found it to be more effective than gabapentin. I'm now up to 7-8 hours of sleep per night, and up for an average of 45-60 minutes per night with RLS, which to me is acceptable.

My local doctor was reluctant to prescribe Lyrica for insurance reasons and cost, and therefore pushed gabapentin. Dr. Silber at Mayo was not so shy about prescribing it, and for me the cost is $40/month...well worth the increased cost for a better night's sleep. There was a time I paid $60-70/month for Mirapex, before it went generic. Who knows, if my local doctor wasn't so reluctant to prescribe Lyrica, it might have saved me a trip to Mayo (not to mention countless nights in agony in my several failed Mirapex withdrawal attempts).

Finally, look into non-pharmaceutical options if you haven't already. Many have had success with Kratom and marijuana. A few have had success with Seratame and acupuncture. The list is lengthy, and the trick is finding something that works for you long-term.
The best way out is always through. - Robert Frost

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: Uncontrolled rls

Post by Skippy »

Hi JimmyLegs44,
Do you take only the Lyrica? I don't think Kratom or mm are available in South MS.
Thank you.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Uncontrolled rls

Post by JimmyLegs44 »

Yes, currently the only prescription medication I take is Lyrica (300 mg). I also take Seratame, although I don't know if it's helping anymore. I plan on stopping this in a couple of months, to see if it makes a difference. I tried acupuncture during the Mirapex withdrawal, and this helped initially, but eventually the withdrawal symptoms were too severe. I plan on trying this again at some point.
The best way out is always through. - Robert Frost

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: Uncontrolled rls

Post by Skippy »

Is there a list of medications used for rls in the order of what works best for most people?? I understand that nothing works the same for everyone, but...just hoping.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Uncontrolled rls

Post by JimmyLegs44 »

Probably the best source is the book "Clinical Management of Restless Legs Syndrome", 2nd edition, by Lee, Buchfuhrer, Allen, and Hening. You can get it on Amazon.
The best way out is always through. - Robert Frost

Skippy
Posts: 27
Joined: Mon Feb 08, 2016 4:14 pm

Re: Uncontrolled rls

Post by Skippy »

Thank you, I ordered it.

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