Improved-uptake gabapentin helps sleep in RLS - new study

[badnights]

Here's the beginning of the Medscape summary:

" Gabapentin enacarbil (GEn) improves both objective and subjective sleep disturbance among patients with primary restless legs syndrome (RLS), according to a study presented here at SLEEP 2010: Associated Professional Sleep Societies 24th Annual Meeting.

GEn is a modified version of gabapentin that increases uptake. Results suggested that receiving 1200 mg once daily produced improvements in both objective and subjective sleep quality measures when compared with placebo in patients with RLS."

The rest is at http://www.medscape.com/viewarticle/723 ... c=145169HZ

Even though gabapentin gave me the dangerous side effect of suicidal depression, I remember with longing the deep sleep I sometimes attained while on it. It's almost enough to make me want to go back to it.

[Polar Bear]

Ah... the bliss of a night's sleep - which is only a distant memory.

[doety]

I really don't understand. Of course I'm happy that they studied this and happy that people are getting this kind of sleep, but would like to know why I got so sick on it. Could it have been a coincidence....twice? Anyone on here who knows me might remember (what, a year ago?) I took it and was dizzy, throwing up. The doc had given me 300 mg. and asked if I would try it again at a lower dose (100). I did and I was keeping a diary, same thing happened, then it seemed to morph into vertigo. I want so much to find something besides Methadone to take. Just makes me wonder if I should try it again.

[Wayne]

I'm going to ask about next time at the doctor. The liquid is no better than the capsules. I think the dose is wrong as it was only a few drops, plus it leaves a bad taste in my mouth for hours afterward

[badnights]

doety, everyone reacts differently. I don't think you should try it again; you've tried it twice and it made you nauseous both times. It is very unlikely that your body's response to it will have changed.

Altho some people on this board have indicated that over time their bodies' response to meds changes, you've tried it twice with the same results. To try it again seems to me to be like beating your head against a brick wall.

[ViewsAskew]

If I had a penny for every time someone reacted contrary to how lots of other people react.....I'd have a LOT of pennies!

I completely agree with Beth - unless there was some weird interaction with the methadone (and it is possible), it sounds like this med and you are not made for each other.

Per wanting something besides the methadone, I have finally been successful. It took months and many trials, but it worked. So, please don't give up. But, I'm still taking an opioid, not another class of drugs.

For me, Dr B was correct. He's always maintained his patients have not had withdrawal issues on methadone. When I was taking it once a day, I wasn't too concerned. When I started taking a split dose, I got a bit more concerned. When one of our members went through withdrawal only taking it once a day, I was pretty sure it would happen to me. Other than a headache or two (and I get them frequently anyway), nothing. So, that was the good.

The bad was that nothing seemed to work or if it worked it caused unbearable side effects.

The third opioid we tried worked, but I needed a LOT of it and he didn't tell me I had to keep the dose down, but I could tell he would prefer I do that.

I realized that the tramadol was a drug that was made for me. I didn't "lose" anything like my happiness, my libido, or my brain power, nor did I "gain" anything like weight or nausea. But it wasn't enough.

So, I asked him if I could try taking the tramadol at the regular dosage and see if I could reduce the hydromorphone from 16-18 mg a night to less than 8 mg a night by taking them together.

It worked. In fact, it works amazingly well. I have found that if I stagger the doses, say 50 mg tramadol at 5 PM and 50 mg at 8 PM, I can get 5 to 5.5 hours relief out of 100 mg, where if I took 100 mg together, I'd only get 3/5 to 4 hours of relief. So, I stagger 50 mg tramadol every 2-3 hours throughout the night adding 2 mg hydromorphone starting at 10 or 11 PM, right before sleep (trying for 1-2 AM), then 1 more when during sleep. Amazingly, I tend to wake up right on cue to take my doses and rarely do I oversleep and get RLS.

I am more functional, my brain is clearer, I am remembering better, and am much less constipated. I actually have had a libido for the first time in like 6 years, I lost ten pounds, and just feel much better.

I'm not saying this is the right combo for you, Doety, or for anyone but me. And, eventually it may not work for me. But I was able to find something that worked. A few years ago, when I hit the methadone, I thought I was at the end of the road and I'd never find anything to help if it stopped working.

Now I not only found something, but I feel better than I did anytime while I was on the methadone.

I hope you find something that works as well for you, Doety. It's been too long that you've needed it.

[badnights]

oh wow, Ann, a happy story!

I am going to remember your combo. I might need to combine my hydromorphone with something, because I have a pretty continual background daytime RLS now, and it's been getting worse steadily since 3 weeks after I started the HM in Feb/Mar. I am taking my first night dose earlier and earlier it seems. (I take it in 2 batches; at first because I wanted it to last longer into the morning, but now because I want it to start sooner in the evening!)

I dread telling my neuro about this... he thought he was out of ideas if the HM didn't work, so I'll have to tell him he still has a few more things to try

[doety]

I've never heard of either one of those -- so that in itself gives me hope. My doc pretty much said we had run through the list. I will definitely bring this us. If you feel like writing, I'd love to know what they are and how you came up with this -- I know they're not RLS drugs, although since when did that matter at all. I guess I have heard about Tramadol and thought it was like a weak Methadone.
I filed for divorce on Friday, so I'm sure this stuff all works together. I know when we would fight, my blood sugar went soaring.
A note to Zach: I know this isn't in the right place, but I'm too tired to move it. You once said something about having a bad night, after a series of bad nights, and just taking a Methadone pill in the a.m. to get some extra sleep. I've done that about three times (over a year) and it feels like a miracle. Last time I got six hours sleep and woke up feeling like a kid -- I got on my bike and flew up the hills, felt good all day long. I've been so afraid of becoming a dope fiend that I couldn't let myself do that, but turns out, it's a present from time to time.
Hope, once more. thanks everyone

[chefws]

I hope to have such luck someday. Presently, about every 4-5 dose of the 10mg Methadone has me projectile vomit it out within 5-15 min. The Methadone does control the RLS, but when I'm on it, my head always feel full of pressure, kind of like a full skull sinus pressure.
And the stuff doesn't make me sleepy at all. I have decided to cut the 10mg TID (Three times a day?) to 5 mg for daytime, 10mg for bed, along with the 2mg Xanax I was taking for 12 years.
The death rate of mixing of the Methadone and Xanax has me concerned, but what the hell, I've gotten suicidal on the Methadone anyway.
Love to all that suffer with this Deviled condition.

[ViewsAskew]

Doety - if I forgot to PM you, PM me, OK? I'm trying to get to bed early so I can make a 10 AM appointment and don't want to get wrapped up a response that I'll enjoy doing more than going to bed - until tomorrow morning when I'm exhausted. What was I thinking????

Quickly tramadol/Ultram is definitely on the RLS list and so is hydromorphone. Hydromorphone is a strong opioid that scares the pants off my doctor when Dr B prescribed it, so she fired me as a patient. I also tried 3 other opioids (I was down to only one left when this one worked), so I bet you've got more options.

Dr B indicated that mixing opioids is NOT something that RLS doctors have any experience with. He was completely open with me that we were in uncharted waters. I wonder if working with a pain doctor might not be helpful, as they at least aren't freaked out by these drugs.

I was shocked at how well these worked together. Taking it alone, I'd never get to sleep again if I only had Tramadol. And, taking it alone, I was needing 16-18 mg of hydromorphone in a 12 hour period (the max per day is 20 mg for RLS). But, I only need to add 4-6 mg of it to the tramadol. Some synergy is there that works well....for me.

After trying several that didn't work, it's nice to be reminded that sometimes things do work out well. I still have some nights where the RLS just doesn't respond like it should and I am up all night. But, that's only 3-5 nights a month, not multiple times a week or every night. That's a pretty good thing.

[ViewsAskew]

oh wow, Ann, a happy story!

I am going to remember your combo. I might need to combine my hydromorphone with something, because I have a pretty continual background daytime RLS now, and it's been getting worse steadily since 3 weeks after I started the HM in Feb/Mar. I am taking my first night dose earlier and earlier it seems. (I take it in 2 batches; at first because I wanted it to last longer into the morning, but now because I want it to start sooner in the evening!)

I dread telling my neuro about this... he thought he was out of ideas if the HM didn't work, so I'll have to tell him he still has a few more things to try

I hate hearing that your RLS is worsening while on something like hydromorphone. Mine always worsened on methadone, yet that is considered rare. I hope yours doesn't continue to do that.

And I hope that isn't in my future, but I know better than to assume anything with RLS.

I totally understand the dread about telling the neuro about it...