Hi All, So glad to find this board.
I'm a 33 yo male who was diagnosed about 5 months ago with RLS/PLMD that I inherited from my mom. I've been sleepy and exhausted my entire life and have a horrible time focusing and staying modivated due to exhaustion. It's to the point that it's threatening my business, my relationship with my G.F. and has drained all the fun out of my life. I no longer have the energy to do anything in the evenings or accomplish anything at my business. I feel like the walking dead as day after empty day drift by.
At first I thought I was ADHD and saw and ADHD specialist who put me on Ritalin and then Provigil which did indeed help for awhile, but still left me feeling exhausted by the end of the day. Eventually I realized that the ADHD drugs were only masking my daytime tiredness and sought out a sleep specialist.
My sleep doc is also a RLS sufferer and has a good understanding of what I'm going through. We did a sleep study and found out I had not only PLMD but also mild obstructive sleep apnea.
First he put me on Mirapex and said I should wait on the apnea treatment. It worked great for awhile at .375 before bed. Then I started waking up at 2:00 am. without being able to go back to sleep. Next I was waking up at 2:00 am but with horrible RLS.
I stopped the Mirapex and briefly tried Requip which caused horrible insomnia while trying to go to sleep.
Finally I tried Neurotin (Gabapentin) to 600mg before bed. Again it worked great for a few weeks (plus seemed to have an anti depressent effect) and still works on the RLS, but I'm no longer rested in the morning.
I'm going to try treating the apnea with CPAP and see if it helps, but I don't have much hope at this point.
When I was younger I could sort of power through the tiredness and had a pretty good life, but now it's just overwhelming. I've never been that bothered by the RLS itself, it's just the lack of restfull quality sleep that's complely ruining my life.
I've been doing quite a bit of research and found that iron uptake in the brain seems to be the most likely root cause of the problem. I'm a networking engineer by trade, so I'm always trying to troubleshoot the real cause of problems. It would seem to me that the RLS drugs even though they help are only masking the symptoms by artificially increasing the dopamine levels, not treating the iron uptake problem. Anyone know if any research is going into drugs that might treat the iron problem?
Also, I've heard that a new Neurotin like drug is coming out called Lyrica (Pregablin) that is effective at lower doses. Has anyone run a study on this for RLS/PLMD.
I'm really despirate for information at this point. Has anyone ever went on long term disability for RLS/PLMD. If things don't get better eventually I fear this might be my only choice.
Newly diagnosed - Can't Find A Treatment
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Adventuregeek
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ViewsAskew
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Hi Adventuregeek,
You're pretty darn up to date! The problem for primary RLS does indeed lie in the brain. The problem is with the amount and type of receptor cells. They are not formed quite right and there are not enough of them. This means not enough iron to the cells in the area, so the just don't work right.
Up until recently, no one did ANY research of consequence on RLS. The autopsies were really the first step in the right direction. That meant the we take hand me down drugs. None of them, including Requip which is the only FDA drug approved for RLS, was developed for RLS. That hasn't changed yet, but I hope it will soon, as more and more people become aware, including the medical community, about the true difficulties people face that have this disorder at a moderate or severe level.
The only thing that I know of that works directly on the problem itself is iron therapy. A small amount of people can take iron supplements and increase their ferritin levels and by doing so, eliminate RLS completely. And some others have the symptoms reduced. But eliminating them is a small amount - I think 15-20% but no promises as my brain is 'off' tonight.
The good news is that people who have received iron intravenously have had much better luck. Some people have remained drug free for several years. It is a dangerous process, though, as I understand it.
The Mayo Clinic is looking for volunteers as we speak. You have to stay there for a week the first time and then go back relatively frequently. If I were closer, I would do it without hesitating.
The best place to go for more info is the the RLS Foundation's conference. I learned so much last year it was incredible. To be able to talk with some of the country's top researchers was fabulous and enlightening. It also made me hopeful for the first time in a long time.
I am writing an article about RLS and relationships. Would you be willing to share info with me? Doesn't have to be public; I'm just want to know as much as I can about the difficulties people are having and how some people have overcome them before I finish it. It's not due until mid-August, but I would like to have responses by first of August. Just let me know one way or the other. Thanks.
Ann
You're pretty darn up to date! The problem for primary RLS does indeed lie in the brain. The problem is with the amount and type of receptor cells. They are not formed quite right and there are not enough of them. This means not enough iron to the cells in the area, so the just don't work right.
Up until recently, no one did ANY research of consequence on RLS. The autopsies were really the first step in the right direction. That meant the we take hand me down drugs. None of them, including Requip which is the only FDA drug approved for RLS, was developed for RLS. That hasn't changed yet, but I hope it will soon, as more and more people become aware, including the medical community, about the true difficulties people face that have this disorder at a moderate or severe level.
The only thing that I know of that works directly on the problem itself is iron therapy. A small amount of people can take iron supplements and increase their ferritin levels and by doing so, eliminate RLS completely. And some others have the symptoms reduced. But eliminating them is a small amount - I think 15-20% but no promises as my brain is 'off' tonight.
The good news is that people who have received iron intravenously have had much better luck. Some people have remained drug free for several years. It is a dangerous process, though, as I understand it.
The Mayo Clinic is looking for volunteers as we speak. You have to stay there for a week the first time and then go back relatively frequently. If I were closer, I would do it without hesitating.
The best place to go for more info is the the RLS Foundation's conference. I learned so much last year it was incredible. To be able to talk with some of the country's top researchers was fabulous and enlightening. It also made me hopeful for the first time in a long time.
I am writing an article about RLS and relationships. Would you be willing to share info with me? Doesn't have to be public; I'm just want to know as much as I can about the difficulties people are having and how some people have overcome them before I finish it. It's not due until mid-August, but I would like to have responses by first of August. Just let me know one way or the other. Thanks.
Ann