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Restless Leg Syndrome

Sleep Health | Last Active: Apr 1, 2023 | Replies (268)

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@suecreader

I have run the gamut of medications for restless leg syndrome (RLS) over the past 25 years, and most of them worked for a period of time and then stopped working or 'rebounded' and created increased symptoms of RLS after a period of time. As I age, my restless leg severity increases exponentially also. I also have fibromyalgia and chronic fatigue (diagnosed by Fibromyalgia Department at Mayo) so when I don't get enough sleep, those issues, along with a back that has had cervical and lumbar surgeries, flare up and are more painful also. Requip worked for about nine years, and then I needed to increase dosage: at first every two-three months, and then it was every two weeks. Each time, I experienced nausea/vomiting, dizziness and sometimes fainting, and a severe headache the next morning. I have been seeing a Sleep Center doctor at Mayo, and she is great, but we have been struggling to find something that works more effectively than Gabapentin which creates issues with my memory . . . when I was taking a higher dose of 1200 mg daily, I was afraid I was developing dementia my thinking was so skewed. Lower doses, 600 mg work better. I recently asked about Neupro which I heard about from a friend who knew someone who had great success with it. However, it too has side effects; same as Requip with the nausea/vomiting, dizziness/fainting, and headache at first dose . . . . but memory issues are somewhat different. With Neupro, at numerous intervals during the day, it will feel like someone dropped a blank box in my brain, and when I try to recall something I know that I know, it just isn't there. It's been a month and a half of taking Neupro, and for a period of four years, I was getting 1 1/2 - 2 1/2 hours of sleep per night sometimes in 15-20 minute intervals with a 6-7 hour night every ten days to two weeks. Needless to say I was a walking zombie. I am wondering if anyone else is taking Neupro and what their experiences are?

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Replies to "I have run the gamut of medications for restless leg syndrome (RLS) over the past 25..."

Hi @suecreader you may have noticed that I moved your discussion on neupro and restless leg syndrome to this existing discussion on RLS that you have taken a part in.

Let's open this up to the group. @mamacita @degarden_girl @barbarn @ssbionicknee @nightwalker18 @gaylea1 have any of you tried this medication? Or have you explored taking it with your physician?

@suecreader Oh Sue, I am so very sorry for all you are going through with this awful syndrome. I too was on requip for a few months but went off it because I felt so ill.

Once I hit on Vit D and found it worked for me, I have not sought any other medications. It sounds like you are desperate for something that will help. I have absolutely no idea if Vit D will be helpful to you but it is a pretty benign medication and worth a try. I take 4000 IU at bedtime. I believe that up to 5000 IUs are considered totally safe and if you want to try more than that, you should probably talk to your MD about monitoring your Vit D.

Yes, RLS does seem to be a problem dumped on us older people. There must be something in our brain that begins to malfunction. I have wondered if hormone replacement therapy would ease RLS symptoms. This issue seems to strike women more than men.

I wish you success with Vit D. Wouldn't it be a wonderful miracle if it resolved your problem.