Klonopin, anyone?
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klonopin, mirapex and iron
Ann,
Am so sorry the iron has not helped you. So far, so good for me.
I first was on carbidopa/levadopa 8 years ago. It helped for a few months until I had rebound effect and was worse than ever. After popping out of bed several times (once cutting my arm on a bedside glass and needing 34 stitches in emergency room at 3AM), my doctor referred me to the sleep clinic at Swedish hospital in Seattle. I had sleep tests two nights in a row and then 1/2 of the day after second night. Tests proved conclusively that I had RLS and PLMD (periodic limb movement disorder).
That was 5-6 years ago and I have been on Mirapex since. It gave me fairly good relief but my new "drug cocktail" has been miraculous to date.
Good luck in your search for relief.
Mary in Lyle, Washington
Am so sorry the iron has not helped you. So far, so good for me.
I first was on carbidopa/levadopa 8 years ago. It helped for a few months until I had rebound effect and was worse than ever. After popping out of bed several times (once cutting my arm on a bedside glass and needing 34 stitches in emergency room at 3AM), my doctor referred me to the sleep clinic at Swedish hospital in Seattle. I had sleep tests two nights in a row and then 1/2 of the day after second night. Tests proved conclusively that I had RLS and PLMD (periodic limb movement disorder).
That was 5-6 years ago and I have been on Mirapex since. It gave me fairly good relief but my new "drug cocktail" has been miraculous to date.
Good luck in your search for relief.
Mary in Lyle, Washington
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Mary, are you keeping up with your ferritin level? Just curious what yours are. I figure that it would take several years to get mine too high given how long it takes to increase it, but it can be dangerous to have it too high.
It's great the the combo you're on works so well. Many people have had good luck using Mirapex for many years. That's probably why it or Requip are now the first drugs recommended to try once RLS becomes daily and disturbing to a person's ability to get to sleep. I'm always happy for those that find something that works. It gives me hope that I, too, will eventually find something that works.
Ann
It's great the the combo you're on works so well. Many people have had good luck using Mirapex for many years. That's probably why it or Requip are now the first drugs recommended to try once RLS becomes daily and disturbing to a person's ability to get to sleep. I'm always happy for those that find something that works. It gives me hope that I, too, will eventually find something that works.
Ann
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Ann,
I am under Dr's watchful care now. I go for blood draws on regular basis.
For the first two weeks after leaving hospital, my blood was checked weekly. I go again next week (after 3-week interval). Then at end of March I have followup endoscopy to see if ulcers have healed. Given the care I have had with this hospital and group of doctors, I am optomistic about my prognosis.
Thank you.
Mary
I am under Dr's watchful care now. I go for blood draws on regular basis.
For the first two weeks after leaving hospital, my blood was checked weekly. I go again next week (after 3-week interval). Then at end of March I have followup endoscopy to see if ulcers have healed. Given the care I have had with this hospital and group of doctors, I am optomistic about my prognosis.
Thank you.
Mary
Hi All
Hi, I was on mirapex .25mg and it would work for about 2 hours then I had the worse case of jerking ever where it would wake me. It never waked me before. Anyway I called my doctor yesterday and he said quit taking the mirapex and prescribed Klonopin for me. I think I am taking .5 of it. But I am curious, I slept like a baby last night didn't even have to get up and go potty from my IC, but my husband said I was talking in my sleep. Has anyone had this happen before from it?
Jan Can't wait to sleep!
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Glad to hear that Klonipin might not be so evil afterall
I have been on Klonipin for two years taking .5mg (1-2 tabs) each night before sleep. I only occasionally needed the second pill (mostly during the first week of my birth control pills). I tried to wean myself off because I'm in one of those moods where I'd like to try the natural approach to things (NOT -well almost). I did get off my blood pressure medicine, but I guess Klonipin is going to be my friend for a long time. I haven't had any problems with Klonipin and being in a fog or overtiredness in the am. I actually even felt more alert and productive during the day because I was sleeping through the night (what a concept!). My hope is for me to get re-prescribed the med and then try to experiment with the chrio and accupuncture and being gluten free, but for now this is my life and I have to quit being in denial and accept my Klonipin and my acute RLS for what it is (a pain in my rear, no legs - LOL).
NOT ONLY DO I TAKE METHADONE, I ALSO TAKE KLONOPIN
I HAVE BEEN ON KLONOPIN FOR 2 YRS, IT WORKS GREAT FOR ME, I HAVE TO BE CAREFUL OR I GET SLEEPY, BUT I KNOW ONE THING I RAN OUT AND FOR 3 DAYS STRAIGHT I COULDNT SLEEP, I STARTED THINKING MY HUSBAND WAS GOING TO KILL ME, I THOUGHT I WAS GOING TO DIE, HE HAD TO TAKE ME TO THE ER AND 1 SHOT OF KLONOPIN AND IT WAS LIKE WAKING UP FROM A DREAM, NEVER AGAIN HAVE I RAN OUT, IN ALL OF THIS THE POINT IS TO PLS TAKE LIKE YOU SHOULD, OVERTAKING MEDS LIKE I HAVE DONE IN THE PAST IS THE WORST THING IN THE WORLD, IF YOU HAVE SOMETHING BAD ENOUGH I PROMISE YOU WON'T LET YOURSELF RUN OUT OF MEDS BY OVERTAKING THEM, I AM SO GLAD I CAN FUNCTION NORMALLY, BUT IF I'M OUT OF MEDS I AM LIKE NIGHT AND DAY, I FEEL LIKE,LOOK LIKE AND ACT LIKE A CRAZY PERSON
Klonopin
I have been taking Klonopin for about 2 years now. In that time, I've had to double my dose, but it works pretty well for me. I do still have to get up at least once a night for the bathroom, but I probably would do that anyway. You do have to be careful when you get up, because the drug really makes you dizzy and disoriented. A couple of weeks ago, I actually walked straight into the closed bathroom door--what a "wake up call"! I plan on taking it as long as it works for me. I'm sure my body is addicted to it, but if it's either that or lying awake twitching, I'll choose the drug anytime.
hey all, klonapin worked really well for me too in 87 when i first was told i had rls. But I got addicted to it. It was the pitts comming of it but it works good I think if you take it right.I have a friend now who was put on it for anxiety!!!!! I say what ever works for you go for it. It is a drag being up night after night~~~~~~~~~~~~~~~Lyndarae
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I am on Klonopin as well and have been for about 2 months. I still feel the need to supplement it with tylenol#4 of hydrocodone in the evening only of course. This course of treatment is not authorized by my neorologist of primary care phjysician. I had to resort to online doctors that review your medical records and are sympathetic to pain and will prescribe what you need to get the relief you deserve. I also am 31 and just finished nursing school. I plan to use this course of treatment until I move with my family to California where I believe medical marijuana (perhaps in conjunction with Klonopin) or by itself will be my "magic bullet" to cure this neuropathic pain I experience on a daily basis due to my primary RLS. Please everyone, persevere; and seek the treatment you deserve.
Hi, Just found this site. I hope I can find some help and get a grip on my situation. AND I hope that the fact that the last post was in February doesn't mean that this board is inactive. It would be great to have some folks who know what this is like. OK, me.
I remember VERY clearly when I first starting taking klonopin--August of 1988. The doctor said I would have to give up alcohol, and I didn't think I could do that. BUT, after the first night on the meds--ohmygawd, I finally knew what good sleep was. It was wonderful. He also told me I had to have a "drug vacation" for 3 weeks/2x a year. I said ok. I tried it once. It was AGONY. I was barely able to function. Felt like I was dying. I think I was taking 1.5 mg at the time. I have not tried getting off the drug every since. But I haven't increased my dosage. I have been taking 1.25 mg for many years. I tried not taking it one night recently and I was a mess the next day. But it seems like the efficacy should have worn off after a few years. Obviously it hasn't. I want off this stuff--for my liver's sake. I am wondering if there are any longitudinal studies. Also, I HATE being drug dependant. It scare the ___ out of me to think of what would happen if I didn't have access to this drug.
HELP?
Jill in AZ
I remember VERY clearly when I first starting taking klonopin--August of 1988. The doctor said I would have to give up alcohol, and I didn't think I could do that. BUT, after the first night on the meds--ohmygawd, I finally knew what good sleep was. It was wonderful. He also told me I had to have a "drug vacation" for 3 weeks/2x a year. I said ok. I tried it once. It was AGONY. I was barely able to function. Felt like I was dying. I think I was taking 1.5 mg at the time. I have not tried getting off the drug every since. But I haven't increased my dosage. I have been taking 1.25 mg for many years. I tried not taking it one night recently and I was a mess the next day. But it seems like the efficacy should have worn off after a few years. Obviously it hasn't. I want off this stuff--for my liver's sake. I am wondering if there are any longitudinal studies. Also, I HATE being drug dependant. It scare the ___ out of me to think of what would happen if I didn't have access to this drug.
HELP?
Jill in AZ
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Jill, I personally have come to believe that the benzos are very dangerous if not used correctly, and I don't think most docs know how to use them so people do not get dependent. Now that I know how hard it is to get off of them from first-hand experience, I think no one should take them daily for more than a few weeks. Drug holidays should be 4 weeks! It's the only way not to become dependent. Some people do not have a hard time tapering off of them, but Klonopin is one of the harder ones to quit and some people are sick for a long time during and after withdrawal, even if they use a slow-taper method. I'd be happy to share with you what I'm doing to get off and what I've learned.
FYI, the board is active, it's just this thread hasn't been used in a while. Glad to have you here. There are lots of other good threads - hope you have fun browsing them.
Ann
FYI, the board is active, it's just this thread hasn't been used in a while. Glad to have you here. There are lots of other good threads - hope you have fun browsing them.
Ann
meds
I'm new to these on-line boards so I hope I am doing this right. I am 43 and my RLS has gotten progressively worse for the last 4 years. I have tried quinine, elavil, restoril, flexoril, and neurontin and none of them worked. My husband doesn't want me telling anyone but I have been self-medicating with his hydrocodone. (He has chronic back pain) I read somewhere that hydrocodone is sometimes prescribed so I tried that and was able to sleep through the night, although my husband says he still feels like he has just put roll of quarters in a vibrating bed!, and the best part of hydrocodone is no daytime drowsiness. I'm sure you all have rode the roller coaster of fatigue from no sleep or the next-day stupor of muscle relaxors or sedatives.
My primary care physician sent me to a nuerologist who prescribed Requip. this is my second day of Requip and no opoids; the first night I got no sleep and had daytime symptoms accompanied by pain in my knees, ankles and calves. Last night I took half a soma-I slept, but was in pain and groggy all day.
Will the queazy feeling from the requip go away soon? Do any of you experience daytime fatigue from Requip?
Why can't we be presribed very low dose stimulants to get through our work day and housework?
My primary care physician sent me to a nuerologist who prescribed Requip. this is my second day of Requip and no opoids; the first night I got no sleep and had daytime symptoms accompanied by pain in my knees, ankles and calves. Last night I took half a soma-I slept, but was in pain and groggy all day.
Will the queazy feeling from the requip go away soon? Do any of you experience daytime fatigue from Requip?
Why can't we be presribed very low dose stimulants to get through our work day and housework?