I was diagnosed a few years ago and given Mirapex. I was finally able to sleep! Well that euphoria was short lived. About a year later, I had developed symptoms during the day. So another doctor put me on Requip. And again it was great at first, but now I have to take at least 2mg at night and I still have symptoms during the day. I recently read on this site about L-Theanine. I tried it and feel that it has helped slightly. My problem is that I no longer have health insurance and my prescription of Requip has run out!! I would love to not take any prescriptions and handle this naturally, but worry that I will suffer constantly. I can not even sit on the couch to watch TV, never mind go to a movie! And this is at all times during the day, not just the evening. I am looking for any suggestions on ways to relieve the symptoms without meds (since I can no longer get them). I appreciate any suggestions you can offer. I am so tired and frustrated with this disease.any suggestions?
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tiredofrls
- Posts: 6
- Joined: Tue Feb 15, 2005 3:00 pm
- Location: san diego
any suggestions?
Hi there! Unfortuantely I am not new to RLS. I have had it since childhood I was diagnosed a few years ago and given Mirapex. I was finally able to sleep! Well that euphoria was short lived. About a year later, I had developed symptoms during the day. So another doctor put me on Requip. And again it was great at first, but now I have to take at least 2mg at night and I still have symptoms during the day. I recently read on this site about L-Theanine. I tried it and feel that it has helped slightly. My problem is that I no longer have health insurance and my prescription of Requip has run out!! I would love to not take any prescriptions and handle this naturally, but worry that I will suffer constantly. I can not even sit on the couch to watch TV, never mind go to a movie! And this is at all times during the day, not just the evening. I am looking for any suggestions on ways to relieve the symptoms without meds (since I can no longer get them). I appreciate any suggestions you can offer. I am so tired and frustrated with this disease.
I was diagnosed a few years ago and given Mirapex. I was finally able to sleep! Well that euphoria was short lived. About a year later, I had developed symptoms during the day. So another doctor put me on Requip. And again it was great at first, but now I have to take at least 2mg at night and I still have symptoms during the day. I recently read on this site about L-Theanine. I tried it and feel that it has helped slightly. My problem is that I no longer have health insurance and my prescription of Requip has run out!! I would love to not take any prescriptions and handle this naturally, but worry that I will suffer constantly. I can not even sit on the couch to watch TV, never mind go to a movie! And this is at all times during the day, not just the evening. I am looking for any suggestions on ways to relieve the symptoms without meds (since I can no longer get them). I appreciate any suggestions you can offer. I am so tired and frustrated with this disease.-
IanFraughton
- Posts: 65
- Joined: Thu Feb 17, 2005 7:11 pm
- Location: Vernon, BC
- Contact:
I know
I hear Valerian Root is a sedative and apparently Saint John's Wort works well too though I havn't used either. Take as much calcium/magnesium as you afford in a day as that seems to help as well. I am on Trazodone which is a sedative/anti-depressant and it seems to helping me sleep and I just got Tylenol 3 without caffeine for the constant aches. We all have our own "formula" that gets us through the day, perhaps go to a health/herbal store and talk to them to see what remedies might help you. Bring some information if they have never heard of it and maybe they could come up with some ideas. Hope this has helped.
Peace
Peace
I call my pacing the "Waltz of the Damned". Anyone care to dance...?
Hi "Tired"
Welcome to the group.
The first place i'm going to point you to is Jill Gunzel's RLS Rebel site at www.rlsrebel.com. She has some wonderful suggestions on how to combat RLS when drugs are not available or you have chosen not to use drugs.
I have used the herb Valerian in conjunction with my other meds and have found that it has been quite effective in helping me go that extra step in trying to get everything to relax when i'm trying to combat my attacks. Valerian comes in varying strengths, and I have found the stronger the better, but as with everything, everyone is different, so you might want to check out your local healthfood store or pharmacy and see what's available. If in doubt about what strength, talk to the staff/pharmacist.
If you read around on the board you will find that a fair number of our members also take magnesium supplements; so by all means, check that avenue out as well.
Also, check out massage, cranio-sacral therapy and acupuncture. If you have a spa-bath/hot tub, or know someone who has one, use it ... i've found spa's absolutely wonderful when my legs have been playing up. Swimming is also another good way to combat an attack. Not necessarily doing laps, but just "walking" in the water using the resistance to give your legs a good workout can be helpful.
Hope this gives you something to work with.
Take it one step at a time, one day at a time, and most importantly, Stay Positive!!
Take care of you!
Welcome to the group.
The first place i'm going to point you to is Jill Gunzel's RLS Rebel site at www.rlsrebel.com. She has some wonderful suggestions on how to combat RLS when drugs are not available or you have chosen not to use drugs.
I have used the herb Valerian in conjunction with my other meds and have found that it has been quite effective in helping me go that extra step in trying to get everything to relax when i'm trying to combat my attacks. Valerian comes in varying strengths, and I have found the stronger the better, but as with everything, everyone is different, so you might want to check out your local healthfood store or pharmacy and see what's available. If in doubt about what strength, talk to the staff/pharmacist.
If you read around on the board you will find that a fair number of our members also take magnesium supplements; so by all means, check that avenue out as well.
Also, check out massage, cranio-sacral therapy and acupuncture. If you have a spa-bath/hot tub, or know someone who has one, use it ... i've found spa's absolutely wonderful when my legs have been playing up. Swimming is also another good way to combat an attack. Not necessarily doing laps, but just "walking" in the water using the resistance to give your legs a good workout can be helpful.
Hope this gives you something to work with.
Take it one step at a time, one day at a time, and most importantly, Stay Positive!!
Take care of you!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
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Guest
tiredofrls,
Aren't we all
I have not really had luck with prescription meds. I have found a combination of things that seem to help me. I have been taking a magnesium supplement, wearing a knee brace and relaxing in a jacuzzi. This combination seems to work better than any I've tried. On really rough nights, I prop my legs up with pillows and wrap them in a heating pad. This seems to help a lot! Anything is worth a shot, huh? Wish you luck! If you come up with something that works better, let us know!
Chirpee
Aren't we all
I have not really had luck with prescription meds. I have found a combination of things that seem to help me. I have been taking a magnesium supplement, wearing a knee brace and relaxing in a jacuzzi. This combination seems to work better than any I've tried. On really rough nights, I prop my legs up with pillows and wrap them in a heating pad. This seems to help a lot! Anything is worth a shot, huh? Wish you luck! If you come up with something that works better, let us know!
Chirpee
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tiredofrls
- Posts: 6
- Joined: Tue Feb 15, 2005 3:00 pm
- Location: san diego
Thanks!
I am coming off of my worst night ever! I literally think that I got a total of 30 minutes rest. Boy this should be an interesting day! Thanks for the suggestions. I will definately be trying them. I have thought about acupuncture, and think that will be my first route (as well as the supplements). I will keep everyone posted on how it works. I appreciate the feedback. As sorry as I feel for all of you, it is nice (for lack of a better word) to know I am not alone. I often feel very misunderstood. Thanks again!
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paigeleigh2
- Posts: 2
- Joined: Fri Mar 11, 2005 5:41 pm
- Location: currently in Modesto
- Contact:
I'm coming off Klonipin and RLS BAD!!
Reading your message brought tears to my eyes. I sent you a PM but wanted to write you a reply on here as well. I too have been having the worst nights of my life. I tried to wean myself off of Klonipin (taking 3/4 for ten days, then half for ten days, and then a quarter for ten days which is where I'm at now) because my prescription ran out and I'm traveling as a nurse in CA and don't have a local neuro (and of course my neuro in TX won't call in any for me). Anyway, I have good nights and bad, but have found that when I'm on the first week of my birth control pills my RLS is in full force and there's no sleep for me! After a small breakdown yesterday, I decided to take a whole pill last night (I have 15 left) and see a neurologist. I figure that I can work with him to get myself weaned off these meds, start with baseline lab work to see if my iron, folate, B vitamins, calcium or magnesium are low. Then I can find a good chiropracture, accupuncturist and a nutritionist to get the mind & body connection working for me so I can do this (be off benzos) for good. Wish me luck, because I need it!!
Hi Tired. . .
I know you're looking for suggestions other than perscription, but I wanted to let you know that once you get insurance and back with a good doctor you might want to try the requip again. I take 1 mg in the afternoon and 2 mg at night to keep mine away during the day and in the evening. This works pretty good for me . . . for now. Still have some pain but my legs don't kick like they did. I can at least sit for a while and sleep better than without the requip. Now I just need to figure out how to get GOOD DEEP sleep so I can stop remembering so many of my nightmares/dreams!
It's a process!
Take Care,
Audrey
I know you're looking for suggestions other than perscription, but I wanted to let you know that once you get insurance and back with a good doctor you might want to try the requip again. I take 1 mg in the afternoon and 2 mg at night to keep mine away during the day and in the evening. This works pretty good for me . . . for now. Still have some pain but my legs don't kick like they did. I can at least sit for a while and sleep better than without the requip. Now I just need to figure out how to get GOOD DEEP sleep so I can stop remembering so many of my nightmares/dreams!
It's a process!
Take Care,
Audrey