Neupro and the insomnia side effect

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mudslide
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Joined: Sun Jun 08, 2014 7:23 am

Neupro and the insomnia side effect

Postby mudslide » Mon Oct 13, 2014 6:29 am

Hi folks -- I was very much helped by this forum a few months ago when I was coming off Mirapex. Now I'm back with a question about Neupro. After the Mirapex and a short time on oxycodone, I got pretty well grooved into methadone. I've been taking it for I guess two months now at least. But it was causing me major overheating when I exercised and random hot flashes at other times; also, if I had to take a relatively high (for me) dose, 10 mg, on any given night, I'd find myself nodding off at the computer or while reading the next afternoon. Not good for driving safety. So I now have a trial of 1-mg Neupro patches, which I put on in the morning. The first night, having worn the patch all day, I took 5 mg methadone and slept wonderfully with no RLS symptoms. Next night, the patch and 2.5 methadone, again no symptoms, but I woke up sometime very early in the morning and couldn't get back to sleep. Last night, the patch and zero methadone, perfect suppression of RLS, but complete inability to fall asleep. I finally removed the patch and took 5 mg methadone. I've been writing Dr. Buchfuhrer for advice -- wow, is he responsive and helpful! -- and he said today that about half the patients who have insomnia with Neupro eventually lose that side effect; half don't. So my question is, is there anyone out there who's gotten over the insomnia side effect with Neupro, and if so, can you tell me how long it took and what you did to cope until the insomnia faded out? It seems as if this could be my dream RLS drug (assuming no augmentation down the road), if only the insomnia doesn't persist.

ViewsAskew
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Re: Neupro and the insomnia side effect

Postby ViewsAskew » Mon Oct 13, 2014 8:37 am

Many of us have had similar issues with the insomnia - and not just with Neupro. When I first took pramiepxole, I'd fall asleep 90 minutes after taking it no matter where I was. After about a year, I started having insomnia issues with it. It seems that there is a lot of variability with these meds...and that things can change at a drop of a hat.

If your insomnia does not stop, consider adding some of the alpha delta ligands in - these are the gapapentin, pregabalin, etc. type drugs. Research is going on about these right now because so many of us have the insomnia problems when the WED/RLS is under control and these drugs almost always help us sleep. I never sleep better than when I take them. For me, though, they make me tired the next day. I haven't ever tried them for more than 3 to 4 weeks and the sleepiness didn't go away for me. But, it does for most people. And, maybe if I tried a really small dose, that wouldn't be an issue.

One thing to consider - if I remember correctly, you stopped the pramipexole because of augmentation, right? If I am remembering incorrectly, ignore the following :-). If you did augment, there is the possibility you will on Neupro. SUpposedly it's better. But there isn't data, yet, to prove that. All I know is that I augmented on it, so I know it can happen.

Since that's possible, consider working with your doctor to discuss the option of a holiday from it, say, one week out of every 4-8 weeks. That MIGHT be enough to prevent augmentation for a long, long time. I usually augment in less than a week. I was able to take pramipexole for two years by alternating with methadone every other day. I had to alternate that fast because I augment that fast. But, for someone who takes months, or even years, switching every month or two could be a magic bullet until they figure out how to stop augmentation altogether.
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.

Rustsmith
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Re: Neupro and the insomnia side effect

Postby Rustsmith » Mon Oct 13, 2014 11:40 am

Mudslide, I have been on the 2mg Neupro patch since early June. Continuing plain insomnia was still an issue, so my doctor increased my dose of gabapentin at night. That normally works, but there are still nights when I have breakthroughs and cannot get to sleep until after midnight. Even on those nights I still wake up around 4-5A when the gabapentin starts to wear off. My doctor allowed me to increase the gabapentin dose just a bit higher to combat the increased insomnia problems that I generally have during the spring and fall pollen seasons. Unfortunately, one of the less common side effects of gabapentin is a lowering of blood pressure. Mine was already rather low and the gabapentin dose I am currently taking has me grabbing things to steady myself anytime that I get up after sitting for a while. I have even passed out two times, so I don't feel that I can safely go any higher to treat the insomnia.
But on the good side, the Neupro is doing a lot better job of controlling my WED than what I was getting from pramipexole.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

mudslide
Posts: 37
Joined: Sun Jun 08, 2014 7:23 am

Re: Neupro and the insomnia side effect

Postby mudslide » Mon Oct 13, 2014 3:51 pm

ViewsAskew and Rustsmith, thank you both for your speedy and helpful answers. I had no idea that alpha delta ligands (whatever they are!) might help. I don't think I've ever taken one. ViewsAskew, you're right, I augmented on Mirapex -- how'd you remember, with all the people who post here?! -- but it took many years for that to happen, so I might be lucky with the Neupro. I really really hope I can get a handle on the insomnia, because otherwise it works like gangbusters. Yesterday I put on just half a patch, 0.5 mg, to see whether that would still help the RLS but eliminate the insomnia. No RLS last night, amazingly, with no added methadone, but still I lay awake. I wasn't as awake as the night before, but I wasn't asleep either. Finally had to peel off the patch and take methadone, eventually 10 mg, didn't get to sleep until 2:30 or 3. Crappiest night in a long time. Aaah, feels good to complain… But I know I'm lucky compared with many others -- there are drugs I can take to stop the symptoms, and normally I sleep well enough to function OK and feel OK. In a week I'm going on a trip to Iceland, so I'm going to quit experimenting until I get back. Then I'll see about getting some gabapentin, and if that's not effective, I can try alternating Mirapex and methadone. Thanks again.

ViewsAskew
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Re: Neupro and the insomnia side effect

Postby ViewsAskew » Mon Oct 13, 2014 10:27 pm

My guess is that gabapentin, pregabalin, or the other one (can't think of it!) will work. In the US, brand names are Neurontin, Lyrica, and .... something :-).

These drugs help with neuropathic pain and are often used for neuropathy. They also are used a lot for fybromyalgia. They are a specific class within the anti-seizure drugs.
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.

Rustsmith
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Posts: 4086
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Neupro and the insomnia side effect

Postby Rustsmith » Mon Oct 13, 2014 10:48 pm

The drug that Views could not remember is gabapentin enacarbil or Horizant.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

mudslide
Posts: 37
Joined: Sun Jun 08, 2014 7:23 am

Re: Neupro and the insomnia side effect

Postby mudslide » Tue Oct 14, 2014 12:59 am

Hoo boy -- I know Lyrica's expensive, so I expect Horizont and Neurontin are too. I paid a $173 copay for 30 1-mg Neupro patches. This could get pricey. I'm fortunate in that if it comes down to it, I could pay. Wonder how others manage. I wonder even more what happens if one is on an expensive combo like this and lands in the hospital, which bills the full price for any meds a patient takes. Or in the nursing home… but I won't go down that road right now, and anyway, it's a separate topic. At some point I should start a thread, because I do wonder if anyone's undertaken an RLS consciousness-raising initiative in nursing homes. Thanks again for your help, Ann and Steve.

ViewsAskew
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Posts: 15742
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Neupro and the insomnia side effect

Postby ViewsAskew » Tue Oct 14, 2014 4:24 am

Neurontin is not expensive - not like Lyrica.

But, you bring up a valid point. I was talking to my mom today. A woman she works with has a mother in a nursing home. $6500 a MONTH!!!!!!! And that does not include any medications or doctor's care.

I think I'll need to work until I'm 80....or start a government job so I get a pension!
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.


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