Sleep Problems due to Requip/Misdiagnosis?

[Summer]

I have been taking .5 requip (.25 didn't work) for about 2 mos now. I couldn't stay up past 9 prior to taking Requip. After Requip, randomly, I was waking up in the beginning of me taking this medication at 3am. Now, I can't stay up past 10, but w/requip lately I have been waking up at 2:30 pm every night, and can't go back to sleep. I have gone from 10-hr requirement of sleep and being tired all day (which is why I went for a sleep study to begin with) to getting about 5 hrs. of sleep a day, and not being able to sleep and having that very moody going crazy feeling because I know I am not well rested, but unable to maintain sleep! Anyone experience this with requip?
On that note, my legs never hurt prior to my diagnosis. I am confused as to why I was diagnosed w/RLS except for the fact that my legs moved 430 times a nite, seen in the sleep study. I was waking up 220 times a nite (not fully realizing). NOW that I am taking requip, with me starting to have lack of sleep problems, my legs ache all the time, mildly.
Unfortunately, my dr. does not have much advice past the requip prescription and to do a narcolepsy sleep study-BUT the requip has solved the full time sleepiness problem . Does anyone have a clue or advice on the effects of requip or maybe a similar situation concerning diagnosis?

[KBear]

If you are not experiencing the uncontrollable urge to move your legs then I would question the RLS diagnoses, tell your doctor that this is not what you are experiencing. Nighttime leg movements does not equal RLS.

However if you do have RLS then I would suggest taking a copy of the Mayo Clinic Algorithm show it to your doctor and ask for something other than Requip. You shouldn't continue to put up those side effects.

The algorithm is attached in signature line below.

[Summer]

Thanks. That gives me more confidence in the direction I need to take.

[ViewsAskew]

Summer, for some reason the leg aching thing is something we've seen on this forum several times. In all cases, the people have switched drugs and the aching stopped. So, this may not be the drug for you.

Did the doc say that you have RLS? Or PLMD? (Or something else.) If it's for PLMD primarily (jerking of the limbs at night, which awaken you, preventing sleep), Mirapex would be a good one to try next. Same if you also have RLS. If he did not record a LOT of PLMs (periodic limb movements), then I wonder why he gave you this drug.

[Summer]

Thank you so much. Yes, I thought from my own research that I match PLMD more closely, though diagnosed with RLS. It could be the Drs. exp. or lack of. Thank you SO much for the medication recommendation and the other info concerning the side effects. I will definately ask my Dr. about this medicine you suggested. Thanks again.

[ViewsAskew]

Not really my recommendation - I'm not a doc! - it's what the Algorithm indicates. It's in the same class and works well for PLMD, according to the literature.

Sleep docs in particular seem to confuse periodic limb movement disorder and RLS. At least to what we think here. But, no one really knows if they are separate disorders or what. Except that a lot of people have limb movements and don't have RLS. And a lot of those people aren't bothered by the limb movements.

Just keep a close eye for any changes. These drugs do have some side effects, and one of them can be a paradox where things get worse. I've never heard of that one happening with PLMD, only with RLS, so maybe it can't happen in your case. BUt, just in case. . .now at least you know to be aware and let us know if anything changes.

[crystina]

I had the same problem with Requip and Mirapex. My doctor added Ambien with Mirapex. I slept for exactly 7 hours and woke up without being droggy. Of course I begain losing benefits of both medications about 2 weeks ago. Doctors don't know why yet. But before then, Mirapex and Ambien were wonderful combinations.

[Pairodocs]

I had exactly the same problem. Taking Requip (2mg) at 7 pm, I can't stay awake after 9 pm, but I'm wide awake at 1 am. My primary care doctor's solution, a sleeping pill. First Lunesta which worked about 6 of 7 nights, but then insurance cut that off. So next Ambien CR, that works about 5 of 7 nights.

My other problem is I'm augmenting on Requip, it's regularly starting at 3 pm, and I have a 60 -90 minute commute at 4:30. So the doc said he was fine with prescribing Hydrocodon to get me through the commute, one a day to take in the afternoon. That seems to work, except the symptoms started at 10 am today. I don't want to take the Requip earlier because it makes me so nauseous and I get hot flashes that it would interfere with my concentration at work.

I've taken him the Algorithm, asked to be switched, but he's had good luck with Requip in other patients and doesn't want to do that. I'm going to a neurologist next week at his recommendation, because of a tingling in my neck. I'm going to ask the neurologist about the RLS too, hopefully he will be up enough on it to recommend a change in medication. I just can't see taking one medication for the problem, and then 2 other medications for the side-effects.

[KBear]

It really burns me up that a doctor would refuse to switch your meds because other patients have done well on Requip, you are obviously not doing well on the Requip. IS HE GETTING A KICK BACK FROM THE DRUG COMPANY FOR EACH REQUIP RX OR SOMETHING?

Here's hoping the neurologist is more reasonable and knowledgable.

[ViewsAskew]

My other problem is I'm augmenting on Requip, it's regularly starting at 3 pm, and I have a 60 -90 minute commute at 4:30. So the doc said he was fine with prescribing Hydrocodon to get me through the commute, one a day to take in the afternoon.

I just can't see taking one medication for the problem, and then 2 other medications for the side-effects.

Pair, it isn't just that taking one med to counter another (though I agree that it nuts at times), but that augmentation is NOT something to screw around with. Period. Yes, if it's moderate, some docs do think taking more of the SAME med for awhile is OK, but more and more the thinking is that this causes problems.

I can't prove anything, and it hasn't happened to many people that I know of, but my RLS is PERMANENTLY worsened because I augmented for too long and my doc didn't take me off of the meds. Period. There are at least three others I know of with similar situation.

So, to me, if you are augmenting, your doc needs to take you off of it.

Oh, hate to say it, but it was a neuro who let me augment for close to 2 years. So, while I hope that the neuro will help, I have seen too much on this board to believe it's always the case.

[Summer]

I am really glad to see that I am not losing my mind or this is not my imagination. Another interesting point you bring up- the tingling of the neck. About 6 weeks ago, my index fingers began to tingle and they still aren't right. I've not discussed this with my sleep dr., however I have discussed it with my primary care, who thought it was a direct result of some excising I had been doing. Now wondering if this is all somehow related?
Thanks again for all your feedback. I have an appt. very soon, and will accumulate all this information I am receiving to bring to him.

[Pairodocs]

I went to the neurologist last Friday, it didn't help much. He switched my noratryptiline for shingles neuralgia (PHN) to gabapentin, but said to keep taking the Requip for RLS. He was checking me for perhipheral neuropathy, I have an intermittent tingling in my neck on the right side and major hand pain that doesn't seem to be totally arthritis in both hands. The carpal tunnel test wasn't positive. So next it's a cervical MRI and if that shows nothing, a redo of the CT test.

I had hoped that the gabapentin would help with the RLS augmentation, but here it is 6:00p and it's starting again, although that is later than it was starting a week ago. He gave me 600 mg of the gabapentin, said start with half a pill for a week and go to whole pill if that didn't help.

My primary care said come back to him after the neurologist had a decision on the PN, I'm hoping he will then be reasonable about going to another drug if I'm still augmenting. If not, it's time to find a specialist.

I took the gabapentin at night, the next morning I woke with a horrible headache. Not as bad this morning. I can't tell if the nausea today is the gabapentin or I'm getting sick.

Oh, and I read it causes weight gain. Not something I want since I've worked really hard to loose weight to help my arthritis, and it's going really slowly. Does anyone else have experience with side effects of gabapentin.

[Summer]

I just went to the Dr. less than a week ago, to try and change my meds because of my worsening of symtons/no more relief from meds, and did bring up my tingling fingers. He didn't even think the fingers were related. He completely changed my treatment plan, though, from just Requip, to Miraplex and Ambian(when sleep is desparately needed- both thanks to all of your advice) and folic acid "just in case" and iron (my iron levels were borderline before, so he decided to prescribe some just in case). For all of you, and I know this is on a different topic, who are having mood disorders from lack of sleep, the relief of Ambien 3 nights in a row has been NIGHT AND DAY in my moods. Thank God for sleep. I feel back to myself finally after months and months of broken sleep.

I hope this little info will help you with your nerve situation. I will let you know if my nerve situation has changed with this new therapy. It is always important to keep investigating. I did go to my Dr. armed with the recent knowldege I acquired from this RLS board just in case he didn't have a viable solution during my appointment. I actually presented this information to my Dr. after I was finished talking to him (after he established less than satisfying relief) . I had cut and paste copied dialogue (no tracking info), and then finally he gave me what I felt I needed, after this. I now think that Drs. will only minimally let us know what we need to know (ie. minimal treatment/step at a time) and will only let us know more if we present them with information (as I did) to get faster relief.

I'll let you know how this goes (crossing my fingers!)

[Sojourner]

P, I experienced a low grade headache (almost like a mild sinus headache) as well as some ringing in the ears when I started neurontin. The headache may not have been as severe as you describe. The good news is that over time, the headaches and ringing in the ears dissappeared. I found that taking a Claritin tablet help my headache quite a bit. Best of luck.