rls under control but i still cant sleep

[kickin' and screamin']

I HAVE FOUND ULTRAM FOR MY RLS BUT MY INSOMNIA IS STRONGER THEN EVER DOCTOR HAS HAD ME TRY, ROZERIM, AMBIAN, AMBIAN CR
I HAVE EVEN TRIED OVER THE COUNTER MELTONIN AND STILL I CANT GO TO SLEEP. AND IF AND WHENE I DO FALL ASLEEP I JUST WAKE UP AN HOUR OR TWO LATER.

IF ANYONE KNOWS SOMETHING THAT WILL HELP ME I WOULD BE VERY GREATFUL. PAUL IN CALIFORNIA[/b]

[jan3213]

You sound exactly like me, Paul. Even when my RLS is under control, I can never stay asleep. I usually have no problem falling asleep, but often wake up with a couple of hours and am up for another 3-4 hours.

I hope you find some help. I hope I do, too.

Jan

[Pairodocs]

I've been lurking on the site to see if anyone has the same problem. I've had RLS since childhood although I just put a name to it 2 years ago. My primary put me on Requip last June, but had to go up to 2 mg to get any result. So it's take Requip at 7 pm because symptoms started at 8, can't stay awake by 9:30pm, but at 2 am I'm wide awake. I've been on sick leave for another problem for several months, but have to start work on Monday again, which means up at 4:30a for a 90 minute commute and not home until 6:30p. I'm dreading having to do it again on only 4.5 hours sleep.
Is this a problem with other drugs besides Requip? or would perhaps another medication help? It doesn't sound like sleep medications do much good.

Deb

[ctravel12]

Hi Deb I am sorry that you are being sleep deprived. Have you talked to your dr and maybe changing your meds? I am not in the medical field so cannot offer any of that advise.

I am on clonazapem and mirapex and so far is doing good. I used to take requip but did not agree with me.

Please keep us posted on how you are doing and hope that you get the much needed sleep that you need.

I do not know if this is any help, but will be here for support anytime.

[Pairodocs]

Thanks Charlene. Yes knowing there is a supportive community out there does help. Reading on this and other websites, it sounds like the early morning wakeup is a problem for several of the suggested drugs. I guess I'm in a fact finding mode now trying to decide if I want to move up my June yearly checkup to discuss changing medication. I'd like to go in with my own suggestion of what to try. It seems like I'm on so many medications that it's hard to sort out the side effects. Diovan HCT for high blood pressure, Nortryptiline for shingles neuralgia, Synthroid for hypothyroidism, intermittent Percocet or Vicodin for post surgical pain after THR, Celebrex for osteoarthrtitis. All of them are important enough that I can't discontinue to see if they are the cause. Makes you wonder how a pharmacist can even sort them all out.
Deb

[SquirmingSusan]

Hi Deb, welcome to the forum. It seems like such a balancing act with the RLS meds. We either have extreme daytime sleepiness from the meds, or can't sleep at all.

I know, for myself, that the Vicodin I take for the RLS symptoms doesn't make me the slightest bit sleepy. If anything, I feel good because I'm getting pain relief and don't want to waste my pain-free time of day on sleep... To get to sleep I take 2 - 2mg. Lunestas, and that will usually put me out until morning. I space them about an hour apart. Sometimes I take a melatonin and half a Unisom, (which is not the same sleep drug as Benedryl which totally aggravates my RLS), but which still can bother my RLS if I take too much.

I used to take Valium every night for chronic vertigo, and that kept the RLS in check, but caused a bit of daytime drowsiness. It did help with sleep, though. Neurontin really made me sleepy the next day, and it didn't work for the RLS, so I quit taking that.

It seems like with my current regimen I sleep well about every other night. I guess that's better than nothing!

Somewhere out there is the right combination of meds. You just need to keep on plugging along until you find what works. Maybe you could ask your doctor about Clonidine, a blood pressure med that helps some people with RLS?

There's also a short acting sleeping pill called Sonata which you can take if you only have a couple hours left to sleep. I took that last winter and it worked great. I felt good when I woke up.

Good luck, Deb!

Susan

[ViewsAskew]

Paul, Ultram has an "awakening" effect for many who take it - they can't take it at night.

Deb, I haven't heard of any of your meds worsening RLS, but that doesn't mean that for you they aren't . If you need all those things, your best bet is something strong enough to knock out the RLS, regardless of whether one of your meds might be contributing.

[D4]

Paul, have you tried Neurontin (gabapentin)? It knocks me out like a brick. But I have a can't wake up on my own and it is known for having a 'hangover' effect of daytime sleepiness/grogginess.

Neurontin was too much for me, but it might help you sleep the whole night.

[Pairodocs]

Thanks for all your suggestions. I have been wondering about the Clonidine but it doesn't look like too many people take it for RLS. A doctor at an urgent care center discovered my high blood pressure and put me on it until I could get back home to see my primary. Since I was on an out of state job detail, I was on it for 2 months. I think it helped a bit but don't really remember much. My RLS wasn't formally diagnosed then (my previous doctor wouldn't listen), so I wasn't thinking about it in terms of medication, was just taking a lot of hot baths. My primary said it was an odd choice and switched me to Diovan HCT which has been effective for HPB. But I'm wondering if I could try the Clonidine again and maybe have it do double duty for HPB and RLS. But I'm also going to ask about a sleep aid to have on hand. I was falling asleep at work before my hypothyroid was diagnosed, and being a "slacker" is a pretty hard reputation to beat. I can't have that happening again because I'm awake from 2 am on. The Sonata sounds like it might do the trick.
I'll keep you posted.

[Pairodocs]

Long time since I last posted, (ref March 07post). My primary wouldn't even consider using Clonidine for both RLS and BP. But I've really gotten a lot healthier through exercise (now that I can after a THR). Everything but triglycerides is below normal now including BP (well still on the Diovan). So I'm hoping to be able to get off Diovan soon.

I just posted on Neurontin on another thread. It too is being prescribed for something else (PHN and pheripheral neuropathy) but I'm hoping will help with RLS. I really really want to get off Requip, am augmenting seriously but can't get the primary to consider it. I think I'm in the severe category, have it everyday, can't sleep with it, etc. He's referenced having other patients on Requip, but I'm wondering if I'm the worse, so he doesn't have much experience with someone at this level. He wants to see me again after the neurolgist diagnoses, so I'm going to have to have a very forceful discussion with him if I'm ever to get off this stuff.

[ctravel12]

Hi Deb It is good to see you post again, but so sorry that you are having a difficult time with your dr. Some of them just cannot see the picture. Let them walk in your shoes for a day, week or whatever and see if their tune changes. I bet it would.

I was on Requip last year and augmented really bad. I had rls 24/7 for most of last year and finally got to see a neurologist who has knowledge of rls; one thing being is that he does have rls and understands what we are going through. Can you find another dr that has knowledge about rls? I know they are far and few between so hope that you are able to. Your quality of life is very important. I think these drs forget that we are paying their wages.

Deb, is their a rls support group in your area that you could go to? That may be where you can get some help and info on drs that have rls knowledge.

Please keep us posted on how you are doing and if you are sleeping better.

Sending good thoughts your way and lots of hugs.
((((((((((((((((hugs))))))))))))))))))

[Pairodocs]

Hi Charlene.
It is frustrating that he won't address the Requip, but he did give me Ambien CR for sleeping, that works about 5 of 7 nights and says he has no problem with giving me the hydrocodon for the afternoons. Problem with switching to someone else is that he is really good for everything else. He is willing to refer to specialists and is very easy to deal with for emergency appts, refilling prescripts, etc. My husband and I had a long frustrating search for a good primary care that was willing to work with us, they were either too young and lible to leave town (and arrogant) or were so well established that they had closed practices. My husband trusts and listens to him, and that means a lot as his family is the type to ignore doctors advice and don't want to think about health problems (and his father was a pharmacist, go figure). The RLS is the only problem I have with him.

I'm hoping once the hand pain and numbness are dealt with by the neurologist, that I can talk with him about the RLS. I'd be happy just using the gabapentin if it weren't for the constant headaches I've had during the 10 days on it. I don't know if I could handle the higher dose that it sounds is required for RLS (I'm at 600 mg at night) if the headaches were worse. I told my primary that the neurologist had switched the noratryptiline (for PHN) to gabapentin, and he made a face, said a lot of people get wiped out on it, so I'm gathering he hasn't had good experience with it. But he didn't say to not take it.

[mackjergens]

According to information on RLS most Blood pressure meds can make RLS worse, so you should read the rls info about meds that make rls worse.

As for Clonidine(catapres) I take it for high blood pressure, you have to take it twice aday. When the dr discovered I had high blood pressure, I had read all the rls info on the web and had read where clonidine was one blood pressure med that does NOT increase rls, so I talk to my Dr and explained about b/p meds and rls, and we decided for me it would be best to take Clonidine. I do not think it helps my rls but it does NOT increase it, and it controls my b/p.

I suggest that everyone read all the RLS info they can and that you print off the list of meds/foods/etc that are known to increase rls in some. I keep the list with me at all times so when I have to have a med for another problem I make sure its not a med known to make rls worse. There are usually more than one med you can take for a medical problem, so its to our advantage to KNOWN and stay away from the meds that can increase our rls.

www.rlshelp.org has a very good listing of meds that can affect RLS. Of course it does not mean that these meds will affect all people who have rls, but for me its not worth trying, for fear of it increasing my rls.

[Sojourner]

Thought I would chime in. Only thing that help me sleep was Klonopin and then after a couple years it had a paradoxical effect and made me less sleepy. I took Clonodine for RLS with good results until a bout with extremely low blood pressure (mine is generally quite low to begin with). Clondine didn't help with the sleep, though. I have tried all the prescription sleeping pills with very little luck. I am on 1200 mgs. neurontin and that does not phase me with respect to sleepiness. Also alternate vicodin/ultram. With some oddities, the neurontin/vicodin/ultram helps with rls but particularly PLMD. I occassionally have periods of reasonable sleep but more often than not brief periods of not particularly restrorative sleep. Currently am in the midst of a major sleep slump--say that 5 times fast. So, don't know if it is me, the meds, or a combination. I wish all the other insomniacs (for whatever reason) on this board a good night's rest.

[ngarde]

that sounds like a nightmare!! must drive you crazy! i always sleep like a log but am still exhausted when i wake up. does anyone know if RLS affects your tiredness even when you are sleeping 'fine'