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Re: Any luck with a sleep study?

Posted: Sat Jan 05, 2019 8:25 pm
by bjoyful
I have just recently joined this discussion board. I've suffered with RLS for over 12 years. I did have the sleep study a year ago this month...and yes it is working. I literally detest having to use it but it has helped immensely. I'm on the c-pap and oxygen. I also take gabapentin twice a day and 1mg. requip . I did start magnesium a week ago...taking it at night. I believe it has also helped. As of the past week I've not had restless legs. But I stay busy....cannot take naps ....legs will not allow me to so I don't. I only get approx. 6 hours of sleep at night but do fine. Doctor says that may be all my body needs.

Re: Any luck with a sleep study?

Posted: Sat Jan 05, 2019 9:18 pm
by stjohnh
bjoyful wrote:I have just recently joined this discussion board. I've suffered with RLS for over 12 years. I did have the sleep study a year ago this month...and yes it is working. I literally detest having to use it but it has helped immensely. I'm on the c-pap and oxygen. I also take gabapentin twice a day and 1mg. requip . I did start magnesium a week ago...taking it at night. I believe it has also helped. As of the past week I've not had restless legs. But I stay busy....cannot take naps ....legs will not allow me to so I don't. I only get approx. 6 hours of sleep at night but do fine. Doctor says that may be all my body needs.


bjoyful, Welcome to the RLS community. You will find lots of people with compassion, understanding and lots of knowledge and experience here. I'm glad you found us.

RLS has two separate problems that initially seem related. First is the obvious one; jumpy legs (urge to move). When it finally gets bad enough to interrupt sleep is when most people with RLS go to see a doctor. Initially controlling the urge to move (usually with ropinerole (Requip) or pramipexole (Mirapex) is enough for the person to get to sleep. As the disease progresses, the SECOND problem begins to emerge: INSOMNIA. This occurs regardless of how well the urge to move is controlled, and dopamine agonists (like Requip and pramipexole) help this only minimally.

The medicines that seem to help some with sleep for people with RLS are gabapentin and medical marijuana (THC). Ordinary sleeping pills (prescription or over the counter) don't seem to help most people with RLS.

If you live where medical marijuana is legal, I would suggest getting some "edibles" and trying them. 10 mg of THC taken an hour or so before bedtime is a good starting place.

PS I love your user name.

Re: Any luck with a sleep study?

Posted: Thu Jan 10, 2019 6:55 am
by badnights
Hi bjoyful. Your dose of Requip/ropinirole is already the maximum recommended for WED/RLS (though Parkinson's patients can go much higher). There are two things for you to be aware of : one is that you may need iron, which may improve your symtoms and enable you to lower your dose of Requip. The other is that sustained use of dopamine agonists like Requip for RLS/WED will usually (in most people) actually make the disease worse over time. This worsening of WED/RLS that is caused by the drug that is supposed to help is called augmentation.

There are a number of informative pamphlets on augmentation published by the RLS Foundation (see the link below my signature), as well as numerous discussions on this board. Please learn as much as you can about it, because if it ever begins to happen to you, you need to be prepared - and your doctor should be prepared as well. Believe it or not, most doctors still don;t know much - or anything - about augmentation and will often tell you to increase your dose, when that will just make things worse. The only way to deal with augmentation is to stop taking the offending medication (meaning, usually, that you need to take a different class or medication or a combination of medications to control the WED/RLS symptoms).

As for the iron, there is a blood test - for ferritin concentration - that can give some indication of whether you need iron. You (and your doctor) should realize that the problem is low iron stores in our brains, not our blood, so there is no direct way of measuring that. Ferritin is an iron storage protein, and if its concentration in the blood is less than 100 in a person who has WED/RLS, that probably means their brain iron is low. To try to correct that, you would supplement with oral (or intravenous) iron, as long as there are no contraindications.

It sucks not to be able to nap, and if you feel like napping, that means you;re probably not getting enough sleep.

Re: Any luck with a sleep study?

Posted: Fri Feb 08, 2019 5:18 pm
by BarryO
It happens that my RLS specialist was a sleep specialist first; an MD/PhD. I was biased against sleep studies and related specialists, but was swayed by the simple logic she gave: RLS isn't the primary issue, sleep is. RLS is one of the things we need to get rid of to get you to a good night sleep. I was desperate to get a good night sleep, having gone many weeks with less than 3 hours sleep a night. So it made sense. We got me on a CPAP, and worked through a different mix of meds, and I'm much improved now.

It took time for me to get used to my CPAP. Hated anything attached to my face. Plus my vanity didn't allow for a snorkel coming from my face while laying beside my wife in bed. Fast forward: I'm used to it now and even become Pavlovian about it. Putting it on symbolized sleep, and I get through the wake/sleep threshold pretty fast now. I wake up feeling "oxygenated," with vitality I lost years ago.

I'd been taking Clonazepam as needed for decades, but stopped it. My doctor said recent studies have shown Clonazepam to be a contributor to dementia, so I stopped that too. Whether the studies are right or not, I don't need the possibility of dementia I'm the mix.

So, my thoughts: Get a good sleep specialist, work thru the CPAP negatives, and consider an alternative to Clonazepam. You may not need it anyways, once you get your RLS to be tolerable and get your sleep back.

All the best...
Barry

Re: Any luck with a sleep study?

Posted: Fri Feb 08, 2019 8:31 pm
by Polar Bear
It's wonderful to hear the positivity in your post and to hear that you are now sleeping so much better.

Re: Any luck with a sleep study?

Posted: Fri Feb 08, 2019 9:38 pm
by BarryO
BarryO wrote:It happens that my RLS specialist was a sleep specialist first; an MD/PhD. I was biased against sleep studies and related specialists, but was swayed by the simple logic she gave: RLS isn't the primary issue, sleep is. RLS is one of the things we need to get rid of to get you to a good night sleep. I was desperate to get a good night sleep, having gone many weeks with less than 3 hours sleep a night. So it made sense. We got me on a CPAP, and worked through a different mix of meds, and I'm much improved now.

It took time for me to get used to my CPAP. Hated anything attached to my face. Plus my vanity didn't allow for a snorkel coming from my face while laying beside my wife in bed. Fast forward: I'm used to it now and even become Pavlovian about it. Putting it on symbolized sleep, and I get through the wake/sleep threshold pretty fast now. I wake up feeling "oxygenated," with vitality I lost years ago.

I'd been taking Clonazepam as needed for decades, but stopped it. My doctor said recent studies are indicating Clonazepam could contribute to dementia, so I stopped that too. Whether the studies are right or not, I don't need the possibility of dementia I'm the mix.

So, my thoughts: Get a good sleep specialist, work thru the CPAP negatives, and consider an alternative to Clonazepam. You may not need it anyways, once you get your RLS to be tolerable and get your sleep back.

All the best...
Barry