Restless Legs Syndrome

[typatterson]

hI. I am wondering if there are any folks out there who have the severe PLMD at 95 episodes per hour. If I don't take Provigil, I can easily sleep all day every day. I can't afford Provigil and am on shortterm disability, after being let go for the effects of sleep deprivation. It is incredibly frustrating. Are there any similar cases?

[smithy]

I have this condition but not as severe. My wife did a video of me one night - all the moving aggravation and anguish surprised me. Always exhausted. Dopamine Agonists like Modopar have helped the most without causing withdrawal problems that arise with some other drugs. Good luck. Smithy

[jmon]

I know that I am lucky to have health coverage. I take no medications except Requip for PLMD. It kills me to take it because except for this, I am a healthy middle-aged person. Requip is the third medication I've tried. I take them for a while, then they seem to lose their affect. I have found that cutting down on alcohol and caffeine have helped as well as mild exercise at night, a hot bath or shower and playing a computer game before bed - who knows why, maybe it just takes my mind off the leg jumping. I work as a graphic designer and on those days that I've suffered the night before with no or little sleep, I've had to lay my head on my desk for a 20 second snooze on more that one occasion. Does your local hospital have a sleep study unit? If they do, I'd go there and plead my case. Maybe they can use you as a case study in exchange for medication that will help. I feel your pain and just hope that someone figures out what the cause of this is so that some day i get the sleep I (we) need. Good luck.

[goldandsilver]

Hi Typatterson,
My husbsnd took Provigil for narcolepsy, not PLM RLS. I have both and take Mirapex 0.5 mg and 0.125 at bedtime. Used to take Klonopin with them but weaned off as I was falling asleep at the wheel..scary. I don't sleep well so I don't think I go into deep rem sleep. Sounds like you need a good neurologist and a sleep study dr. You might be sleeping but if your leg movements aren't controlled then you are not rested come morning. Do your legs hurt from thigh to feet when you wake up?? Mine did and my husband told me I moved my legs all night like I was riding a bike. Great!! I had a sleep study and even on medication my family doc prescribed for me i still had many awakenings per the sleep study. I thought I had only awakened about 3 times and the technition said I I had 59 awakenings. If you don't have insurance see if you qualify for state assisted health insurance?? Some areas have study groups for new medication for RLS and PLM. Find a good neurologist and sleep study doctor and qestion if there are any sleep study experiments being done for RLS and PLM where they even pay you to participate to be a test subject.
Good luck. I hope you find a way to get medical help and the right medication.
goldandsilver

[jmon]

Since my first response to the post, I have been going to an acupuncturist. First of all, my insurance company does not cover Requip anymore, so I discontinued taking it, but was prescribed Ropinerole, which is a generic. I have reduced my medication in the 8 months of acupuncture from 3 mg. to 1/2 mg a night. I am still bothered (like the past few days) when it is full moon, but the fact that I have been able to reduce the medication is a wonderful thing for me. I know that acupuncture might not work for everyone, anyway that's what I've read, but it seems to work for me. I started out going once a week, then twice a month and now I go once a month. The treatment, if anything, is relaxing and helps me feel great. I too had a sleep study done many years ago and had more than 300 episodes a night.
Wishing you the best.