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RLS or PLMB?
For years I have had daytime sleepiness everyday. I will go to bed around 10:30 pm and wake up on my own around 6:00 am. When I wake up I feel tired. My knees, hips and lower back hurt like I've been running all night. I finally convinced my sleep doctor, whom I see for apnea, of this and scheduled me a sleep study. It confirmed hypersomnia. Dr didn't call me but prescribed a medicine that was $600.00 a month, which my insurance denied. He tried two others which caused issues with urine flow. He told me that was my choices. I looked at the study results and it said I have 60 leg movements and hour but was of no concern. My primary doctor referred me to a sleep neurologist who said he didn't think I had RLS because my legs don't tingle or feel creepy crawly and because it happens at night. I had read about PBLM and asked if it could be that. He said he that he thought my hypersomnia was caused by my hip, back, and knee pain. He suggested that my primary physican prescribe me Ritalin , which he did but it didn't help. If I try to read or watch TV during the day I will surely fall asleep and feel sleep drunk when I wake up. I had been prescribed Gabepentin before and it didn't help and caused serious side effects. I recorded myself sleeping with an IPad and showed my primary doctor my leg movements and he was more concerned with my head and facial movements and had me tested for seizures which was negative. Also for years I have to wear a mouth guard to sleep because I would bite my tongue in my sleep. I have also taken Pramipexole which also cause leg stiffness and issues with urine flow. I pretty much get, got nothing for you.
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Good morning,
Do you experience a leg twitching or "jumping" every few seconds, up to 15 seconds? If so, that is PLMD. I was told not so much diagnosed, with RLS over 35 years ago by my GP. I began the series of medications to relieve symptoms associated with it, but I knew something wasn't clear, as augmentation would set in with no matter what prescription I was prescribed. Finally, a Mayo Sleep Specialist and Neurologist diagnosed me with PLMD about 2-3 years ago, and I profusely thanked her and knew she was listening to me, and to my symptoms. I take an opiate called buprenorphine, a small dose, .66 mg from a 2 mg tablet. It has made all the difference in the world, as I now can restfully sleep up to 3 hours without waking up, and when waking up to use the bathroom, or with dry mouth ( a side effect besides constipation) I return to sleep.
I would find another neurologist.
Also, get off the pramaipexole: that drug is wicked! So wicked is once you taper off and stop this drug, the PLMD or RLS returns with a vengeance, and makes your body in a worse state, tackling more episodes than before.
@vikkitennis
I have had lifelong insomnia and was diagnosed with PLMD a few years ago with 120 twitches an hour. I was prescribed gaberpentin, but didn't want to take it due to side effects.
I am now sleeping more than 7 hours a night for the last 7 months with a fairly new drug called Quviviq. I take 50mg a night as the research shows it to be more effective than the 25mg....I continue to wake once or twice a night but I am now able to get back to sleep. Magic!!!
The only downside is that ir costs me €100 a month ( I live in Ireland) and this is not covered by insurance. I need to ensure that I will be in bed for 8 hours as it has a half life of 8 hours, but I just don't take it if I can't guarantee that. I then revert to sleeping patterns similar to, but not as bad as, my previous insomnia. It's not addictive snd doesn't build up a tolerance.
I was diagnosed with RLS over 35 years ago when I had a sleep study. I took Requip for years but I stopped taking it. I am taking nothing now because of the side effects of the usual meds. The pulmonoligst and a sleep neurologist both said I got nothing for you. I live in the Peoria, Il area and there are few doctors that practice this. I do wake up frequently at night but have no problem going back to sleep. I sleep 7 to 7 1/2 hours at night but usually feel tired when I wake up. My knees hips and back hurt when I get up and after I move around it feels better. If I sit down or read I will fall asleep after a couple of hours. I was diagnosed with hypersomnia by a sleep study last year. It was noted in the study that I have 60 leg movements an hour but doesn't seem to concern anyone but me. I believe that the leg movements interfere with my sleep and are the cause my hypersomnia but can't convince anyone else.
@shakota. Hi shakota: I agree with vikkitennis: it doesn't sound like the neurologist you are seeing is doing right by you. I get the feeling that a lot of "so called sleep specialists" are mainly interested in treating sleep apnea. That was where the money has been for quite a while. Maybe, you need someone with more expertise and specific interest in treating RLS (or PLMD or both.)
My symptoms are so different from "textbook" that I never suspected I had RLS. What convinced me RLS was an applicable diagnosis was because my symptoms occur only when I am asleep or sleepy. My RLS presents as an unbearable pain that builds in intensity. It feels like I need to twitch or jerk, but I can't.
When I have a run of many bad RLS nights in a row, my legs remain achy in the daytime. The RLS episodes are discrete and definitely painful, while this residual aching is more generalized, but thoroughly unpleasant.
I've read a range of RLS symptoms described on this forum, making me wonder if these variations are from our individual responses to the same neurological phenomenon or if some of us actually have slightly different disorders.
Although frankly the label is less important to me than getting successful treatment. "Whatever the label" the cause of my symptoms is neurological and it has something to do with me being in a state of sleep or sleepiness. And, my "guy" (an expert committed to treating RLS) has successfully treated me.
Like vikkitennis, I take buprenorphine and it costs about $75 for a three month supply (prescribed as Suboxone) using a GoodRx coupon. I had to endure the gamut of ineffectual drugs first, however--but my neurologist didn't throw up his hands after gabapentin, pregabalin, and IV iron didn't work. He never prescribed pramaipexole for because he realizes (like vikkitennis attests) it is a really bad drug.
I believe The RLS Foundation can help you find a neurologist with special interest in RLS and/or PLMD. Google their website. Depending where you live, possibly going to a Mayo RLS specialist could be a worthwhile step. People on this forum have had good RLS care at Mayo. Personally, I have to go to a nearby state to connect (via telemedicine) with my RLS expert. I credit seeking out a really good doctor as the reason I have had really great success controlling my RLS (suppressing symptoms to NONE for over a month at a time).
There are other factors that contribute to sleep--such as age. I am old and no longer sleep like someone younger even with RLS controlled. But, in my opinion, (whatever your age) having a leg-jerk every minute, all night long, can't possibly be of "no concern" when you wake without feeling rested. It does sound like "no concern" is a cop-out for that neurologist having no idea how to treat you.
Your situation sounds unique and I hope you will continue to share your story--letting us know what steps you take and if you have a better outcome with different treatment.
Wishing you the best!
@leemoore13
Hi Lemoore13,
Thank you for your reply to my post, involving the PLMD.
Gosh, I do not know about the medication mentioned, Quiviviq.
It appears you have had success with it, and I am happy for you. I will ask Mayo’s Sleep Specialist about it, and once again, I thank you for sharing this medication with me.
Vikkitennis
Yes, I play tennis, and I love the game!
@shakota
Hi Shakota,
Wow, it appears the medical staff you are seeing, are dismissing you with a wave of their hand, and tell you to live with it, and there is nothing else to do.
I would seek help in the Chicago area, Cleveland has a very good medical center as well. If you have a teaching hospital nearby, with neurological care, I would seek them out. I know in today’s age, you need to wait a long while for an appointment. You didn’t list your age, but I worry about as you do age, ignoring the help you need. I am 71, and I fear when I am 80-85, what my life will be with this dreadful ailment.
There are bands approved by the government to wrap around your legs. You can research this.
This is the beauty of our country, you are able to visit a number of doctors for help. Like you, I didn’t take any medication, almost two years ago, as I thought it was a pinched nerve. The PLMD kept my husband up. One drug I wouldn’t advocate is methadone. A neurologist from the Barrow Institute placed me on methadone, 10 mg, and the panic attacks were frightening!
After one month, I quit that, and him.
Please keep all of us updated on your journey.
@vikkitennis It's actually a different kind of drug to other sleep meds. It stops you staying awake instead of pushing you to go to sleep. It has been a miracle for me. My children said they always thought i might die from no sleep, but I have a new lease of life at 70. None of the doctors or the pharmacists were familiar with it, but my doctor now prescribes it for others suffering from insomnia because it's not addictive and doesn't build tolerance. Like every drug, it won't work for everyone, but my daughter also finds it fantastic. Good luck!
@vikkitennis I don't have insomnia I have Hypersomnia which is the opposite. I sleep at night but I think the PLMD interups my sleep. Also when I wake up my legs, knees, hips, and lower back hurt and I still feel tired. Unfortunately the "experts" don't think this is probable and after trying anew men's they say I got nothing for you.