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[Gaely]

I have had moderately severe RLS for about 3 years. For the first year I tried to manage it myself with muscle relaxants (semi effective) but for the past 2 years I have seen a movement specialist nuerologist and he put me on Requip which has worked well for me EXCEPT he keeps having to increase the dose. Although my symptoms are still at night I am afraid I will soon reach augmentation. Since I am Bipolar (pretty bad), I have to take meds that make RLS worse, one being seroquel 500mg and lithium 600mg. I am in the process of trying to eliminate caffeine, but I have had terrible insomnia,and have sleep deprivation symptoms during the day (this has been going on for a month), so cutting back the caffeine has been a slow process. Ironically, one of the psych drugs I am on is Klonopin 4mg which is used to treat RLS, but I have been on the Klonopin probably 10 years so I am not sure it is effective. RLS really stepped up with going on the seroquel. So do I go nuts with RLS or Bipolar diorder? What a choice!!! Anyway, I love horses---have one in my backyard and he keeps me distracted. I would give anything for a good night's sleep.
I really just wanted to say "hi"...guess I got a bit wordy. I am enjoying the discussion board.

[Polar Bear]

Hello Gaily and welcome to the discussion board.

It's good that you are getting some relief from the Requip and can tell you that augmentation is something that is probably at the back of most of our minds. I try to put that thought on a back burner to worry about it if and when it happens.

I feel for you in your battle with insomnia and know the long nights and the fatigue that it brings. Last week I slept two hours on the Wednesday night and my next sleep was a nap on Saturday afternoon. However, I believe that my original insomnia is now being exacerbated following starting on prednisone (steroid) for an unrelated condition.

Unfortunately I don't have any good suggestions with regard to the insomnia cos nothing at present is working for me. Indeed when it comes to pharmaceutical information in general there are others on the site who are much more knowledgeable than me, and I dare say they will be along before too long.

If you click on the link in my signature it will take you to the Mayo Clinic Algorithm which my GP doc has been happy to use to work with me. Also there is a book by Dr Buchfurer which is excellent and can be got from Amazon. Mine is full of post-its and markers.

Dr B will also respond very speedily to emails.
His address is: somno@verizon.net

Dr B also answers hundreds of letters on www.rlshelp.org

Just wanted to say hello, and don't be concerned about being wordy


Just wanted to say hello.

[badnights]

hmmm. Altho Klonopin/clonazepam has been and still is used by many ill-informed doctors to treat RLS, it actually does nothing for it. Having RLS in the middle of being doped out from a sleeping pill is not fun. But it can be useful as an insomnia treatment, once the RLS symptoms are taken care of.

I wish I knew the answer to the insomnia but I'll tell you something that probably won't help: at least part of my insomnia (difficulty falling asleep and maintaining sleep) was caused by an undiagnosed sleep-related breathing disorder. I've been using a CPAP machine for 3 weeks now and although I'm not all fixed yet, my sleeping has improved and I have more energy in the daytime. LikeI said, I wish I had real knowledge to offer, but that;s the only thing of potential use: you may have an undiagnosed breathing disorder.

PS Some people didn't want to believe I needed a CPAP because I have totally the wrong body type, but apparently I have a recently defined disorder (Upper Airway Resistance Syndrome) that can be thought of as the equivalent of sleep apnea for the skinny person.

[chefws]

The worst reaction I've ever had was to Seroquel. I so increased my RLS it was as though I was a puppet on a string controlled by someone with a seizure. It was one of the worst days of my life. To try to ward off the effects, I drank a pot of coffee, doubled the dose of Permax, even though it has ulled from the market.
Once I finally got to sleep, my wife was forced to say up due to all of the movement of my limbs in th bed.
Personally, I would try to find another medication to Serquel.
I wish you the best!

[ViewsAskew]

Hi Gaely,

That's such an unfair situation - they drugs to help one cause the other. We've had a few others in the same situation. There isn't an easy answer, as you already know.

There is a chapter in "Clinical Management of Restless Legs Syndrome" written by Hening, Buchfuhrer and Lee, on managing RLS with psychiatric disorders, including bipolar. It doesn't offer a magic bullet, but does give a few hints on how to potentially manage meds.

I was surprised to read in the chapter that Klonopin is usually a good med to use with bipolar as it's been shown to help make sleep more restful. Maybe it's helping some and it would be worse without it.

[SquirmingSusan]

Hi Gaely, welcome to the forum. It's rugged to have medical conditions that compete with each other. I wish I could make it easier for you. All I can say is take it as it comes. If you do augment on Requip, there are other options for treating RLS and you'll find something else that helps.

I have RLS, depression, and narcolepsy, and the meds are all at war with each other. My narcolepsy meds give me RLS rebound as they wear off as well as some wicked anxiety. Antidepressants can make RLS worse, but fortunately they don't bother me except for the first week or two on any given med. But at least I've reached a sort of balance with it all where I can function most days.

Hang in there.

[Gaely]

In the past month aside from the insomnia, I have been sleepwalking doing all sorts of bzarre things. Doc said it was the requip and I am now weaning off and he has put me on methdone. The jury is still out on that. The seroquel definitely makes RLS worse, but so do most of the antipsychotics. (which unfortunately I need). Once a doctor told me I had the choice between Unstable bipolar or rest lesg. And as unstable as I can get bipolar wise I told him I would take unstable bipolar over RLS in a minute. Which I guess goes to show how really awful RLS is. So have any of you tried methadone??? Would be interested in some feedback.Thanks

[SquirmingSusan]

Yes, many of us take or have taken methadone with good results. Just watch out for the constipation; that can be quite the issue with that drug. Otherwise, it can work very well with a minimum of side effects. I hope it works for you.

[ViewsAskew]

I took methadone for about 4 years - saved my life at the time. Eventually I needed something else and we found something to work.

[Gaely]

Yes, it is very hard to manage two major illiness at once when so many meds for bipolae tends to make resrless leg worst in particular seroquel and lithium. And both requip and methodone have the side effects of making mood disorders worse. but I rather, as I said before Have the mood disotder get worat and it can get pretty bad than take the chance of RLS gatting worse. That is how miserable RLS is to me. My neurologist has complete faitj in mehadone and many of your replies supported this. That was a HiUGE relief to me and ave me some hope. The insomia and sleepwalking was becoming rea; rissie to me. I did such bizarre things sleepingwalking, like I had this mood jouranl....about a 1/2 of a thick notebook and the other night in my sleep I buutered every single page and sprinled sugae on every single page. One night we have a calico cat and I colored all her white spots with magic marker so I had a grren red and blue cat!!! Hoepully the metadone will end these crazy ventures!!!!I am sleeping better om the metadone and no signes of RLS. Maybe hope
after all !!!!

[SquirmingSusan]

Gaely, you colored your cat and buttered your journal while you were on Requip?! Wow, that's just wild. I would love to see the drug companies add side effects like that to their official literature.

"Side effects include drowsiness, nausea, compulsive gambling, strange cravings for buttered and sugared paper, and coloring your cat in your sleep with magic markers..."

Seriously though, I hope you start getting some quality sleep now with the methadone!

[badnights]

and ... there's always hope!. Always!