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Periodic Limb Movement Disorder
Sleep Health | Last Active: Apr 30, 2023 | Replies (50)Comment receiving replies
Thank you for all of the detailed information. I've had PLMD and RLS since I was about 14. I can handle the RLS it's the PLMD that I am constantly fighting. The twitching during the day but mostly at night. The acking and pain in them is unbearable sometimes. I've been on every medication possible until my body doesn't respond to it. I finally did an EEG which came up fine and sleep study. The sleep study came up that I have severe PLMD and RLS and to take 1200 MG of Gabapentin and 600 MG of Mirapex. I work in finance and theres on way I could function that. My doctor never went over my my sleep study he just said over the phone what I told you. I'm wondering how severe is it? What do the PLMD arousal number mean. Will this keep getting worse? I have to take mirapex throughout the day because insurance doesn't like to cover time release. When I was on different insurance they covered Nuepro patches. Those worked so well. My doctor at the time referred me to Seattle doctors after 6 months of seeing him. No one in Seattle specialist in PLMD. Are there other people out there going through what I am? Are there different medications that help better so I don't have off time. Any help would be appreciated. Thank you
Replies to "Thank you for all of the detailed information. I've had PLMD and RLS since I was..."
Not sure about PLMD but I have a real battle with RLS. I'll be good for 8-10 days then it will keep me up all night. After going sleepless for about 38 hours RLS symptoms hard to control for next 2 days. Only thing that has ever given me any relief is methedone. I also use the nuepro but not sure it does anything. Biggest draw back with Meth is getting it is a major pain in the ass. Very few Dr will take Rx over for specialist. In my case that means traveling 4 hrs Rd trip to specialist once per month to pick up written Rx. Drs will not mail and my eye sight won't allow me to drive so it creates a real issue. Gava p did zero... Good luck but look into meth it may give you some relief.
Look at Myoclonus Dystonia disorder. Like me, you may need another diagnosis. Suggtest EEG and an MRI. Zone in on brian tumor and slow release of magnesium from the brain barrier. You and I have something exotic that Docs in the know have to bone up on. Some don,t have the time. I see mine in a week. I will post back. We don't dream about twitches we have lighting bolts all day long when we get drowsy. So what do we do? Keep looking and asking questions. Maybe some one will believe us and not try to treat us with you have an urge to move at night crap.
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@krissyelkins07 -- @kanaazpereira mentioned low iron levels may be related to the PLMD condition. I did find some treatment information and it was mentioned along with other nonpharmacology therapy.
UpToDate - Treatment of restless legs syndrome and periodic limb movement disorder in adults
-- https://www.uptodate.com/contents/treatment-of-restless-legs-syndrome-and-periodic-limb-movement-disorder-in-adults?topicRef=4892&source=see_link
Have you made any lifestyle changes in your diet to see if they help? I did see that caffeine-containing products such as chocolate, coffee, tea, and soft drinks should be avoided. Also, many antidepressants can cause a worsening of PLMD in many patients and should be reviewed, discussed and replaced by your doctor. This was mentioned in the Cleveland Clinic PLMD information here:
-- https://my.clevelandclinic.org/health/diseases/14177-periodic-limb-movement-disorder-plmd-in-adults/management-and-treatment