Any luck with a sleep study?

Please share your experiences, successes, and failures in using non-drug therapies for WED/RLS (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
bjoyful
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Re: Any luck with a sleep study?

Postby bjoyful » Sat Jan 05, 2019 8:25 pm

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.

stjohnh
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Re: Any luck with a sleep study?

Postby stjohnh » Sat Jan 05, 2019 9:18 pm

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.
Blessings,
Holland

badnights
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Re: Any luck with a sleep study?

Postby badnights » Thu Jan 10, 2019 6:55 am

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 of 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.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

BarryO
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Re: Any luck with a sleep study?

Postby BarryO » Fri Feb 08, 2019 5:18 pm

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

Polar Bear
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Re: Any luck with a sleep study?

Postby Polar Bear » Fri Feb 08, 2019 8:31 pm

It's wonderful to hear the positivity in your post and to hear that you are now sleeping so much better.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

BarryO
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Joined: Wed Mar 07, 2018 5:29 pm

Re: Any luck with a sleep study?

Postby BarryO » Fri Feb 08, 2019 9:38 pm

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

MonkNYC
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Joined: Thu Sep 12, 2019 5:01 pm

Re: Any luck with a sleep study?

Postby MonkNYC » Sat Sep 14, 2019 8:37 pm

I, too, am new to this board. I have read these posts with great interest and thought I would share my own experiences with sleep studies. I've been wearing a Fitbit for the last few years and was startled by the differences between what I thought I'd been asleep and what Fitbit said. (Some nights it said I was awake for an hour or two in the middle of the night when I hadn't been.) And I was tired all the time. My GP sent me to an expensive, well-regarded sleep specialist who sent me off with an at-home one-night sleep apnea test. Result: sleep apnea not my problem. Sent me off with an at-home three-night "EEG" (I use the term loosely, he didn't) test. Result: confirmed what Fitbit was saying, that I got no deep sleep and half the REM sleep I needed. He threw up his hands, because he was only equipped to handle apnea, but did enroll me in an on-line, six-week behavioral modification therapy course for sleep. Result: discovered I don't have insomnia, because I didn't have trouble falling asleep and the course said nothing about flopping legs. I believed I had RLS, but it was never officially diagnosed. Meanwhile, I also have essential tremor and epilepsy. Not having seen a neurologist in more years than I care to admit, I went to one, who prescribed Gabapentin. That stopped the flopping legs and made sleep easier. She sent me to an epilepsy specialist, one who also knowledgeable about RLS. He ordered an in-hospital sleep study. That night I got the best night of sleep I'd had in months. I was afraid it would turn out the whole thing was in my head. But it confirmed all the previous studies and my Fitbit. I'm now officially diagnosed. He also checked my ferritin levels, which were 40, and talked to me about the value of raising that. The 900 mg of Gabapentin was helping for awhile, but lately the old problems are back.

stjohnh
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Re: Any luck with a sleep study?

Postby stjohnh » Sat Sep 14, 2019 9:25 pm

Welcome MonkNYC to the RLS community. It sounds like you don't have RLS but only PLMS (periodic leg movements of sleep). It is closely related to RLS and mostly the treatment is the same.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do (ferritin test) to check for low iron only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

badnights
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Re: Any luck with a sleep study?

Postby badnights » Sun Sep 15, 2019 6:33 am

MonkNYC wrote: I believed I had RLS, but it was never officially diagnosed. Meanwhile, I also have essential tremor and epilepsy. Not having seen a neurologist in more years than I care to admit, I went to one, who prescribed Gabapentin. That stopped the flopping legs and made sleep easier. She sent me to an epilepsy specialist, one who also knowledgeable about RLS. He ordered an in-hospital sleep study. That night I got the best night of sleep I'd had in months. I was afraid it would turn out the whole thing was in my head. But it confirmed all the previous studies and my Fitbit. I'm now officially diagnosed. He also checked my ferritin levels, which were 40, and talked to me about the value of raising that. The 900 mg of Gabapentin was helping for awhile, but lately the old problems are back.
It sucks to have WED/RLS but it sure is nice to have official corroboration of what you knew for a long time! It's wonderful that you're now dealing with someone who has educated himself (at least somewhat) on the disease. He's right about the iron. WED/RLS is essentially a dysfunction of the systems that bring iron from the blood into the brain, so our brains are low on iron. There's no way to just inject our brains with iron but if we take enough orally or intravenously, that helps raise the levels in our brain cells.

Getting intravenous iron would be easy if your serum ferritin was less than 20 but with the right doctor (one knowledgeable about WED/RLS and especially the document Holland linked to) it should be possible to get infusions with ferritin of 40. It's not so easy if your ferritin is above 100, unless you've had infusions before.

You can alternatively take oral iron (it's best to first get your doctor to confirm that you're not in danger of iron overload). You could try one or two pills of 325 mg ferrous sulfate or fumarate daily, taken on an empty stomach wtih vitamin C to aid absorption. You might want to google iron absorption to find out what foods interfere with iron absorption.

It's possible that raising your ferritin over 100 will help so much you won't need medication anymore. You should make raising your ferritin your Number One priority.

PLMD is periodic movement of limbs disorder, characterized by regular, repeated involuntary movements of the legs. WED/RLS is also characterized by restless movements that disrupt sleep, according to many of us who have it, and some clinical doctors who specialize in it have agreed with us (although the medical literature, by contrast, suggests that the sensory and motor abnormalities of WED/RLS happen only during wakefulness). People with WED/RLS often have periodic limb movements in sleep (PLMS) as well. You can tell if you have RLS/WED if:
you feel an urge to move that's focussed in your legs (& maybe arms), often accompanied by bizarre yucky awful abnormal sensations or perhaps pain,
that's worse late in the day (evening and early night),
that's triggered by resting (sitting or lying down and relaxing mentally), and
that's relieved by movement but will come back when you stop moving.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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