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Posted: Fri Apr 23, 2004 12:35 pm
My doctor recommended the "drug" Mirapex for me to take at night before bed. I usually take it around 7ish for a 10pm bedtime. I have found it to work in allowing me to sleep peacefully throughout the night.
Posted: Tue Apr 27, 2004 1:20 am
I take Mirapex also and it has worked well for me until recently. So it's back to the doctor to see if I need to increase the dose. I also take Neurotin because she didn't want to increase my Mirapex last time. I'm glad you have found something that works. Sleep well.
mirapex and cloazepam
Posted: Mon May 17, 2004 2:27 am
After running through all the meds from lepodova to psychoactive drugs and not get any relief, my doctor put me on mirapex about 2 hours before bedtime, and then 1mg of clonazapam at bedtime. The combination has been effective for about 5 good hours of sleep.
It has been working for about 3 years now.
Posted: Fri May 21, 2004 4:01 am
I've been taking .25 mg of Mirapex daily for about a year and half now, and have recently needed to increase the dose to .50 mg. Has anyone experienced or heard about any negative side effects at this dosage level?
Posted: Sat May 22, 2004 3:24 pm
I have suffered from RLS for 7 years. I was lucky enough to live near a hospital where one of the experts in the field works. Finding him was such a relief. Some medecines I have taken over the years have worked for a good period of time, and either lost their effectiveness or caused irritating side effects. I have used Sinement (timed release) which eventually lost its effect, mirapex (eventually it pushed the rls symptoms from the evening to the day), neurontin in addition with the mirapex (after awhile caused burning/tingling in my feet a good part of the day), clonidine (after awhile caused itching that kept me awake) and currently I am taking Requip with Ultram. Each of these medications helped me for months. Right now I am sleeping fine. I guess my message to people who are suffering is to not give up until you find the neurologist who is not only knowledgeable about RLS, but who will also take the time to modify dosages, blend the right medecines, but above all else will take your description of symptoms and complications seriously. There is help out there even if you have to knock on a lot of doors and be annoyingly persistent in your search. Definitely ignore those doctors who suggest it is because of stress, sleep hygiene or
somehow something you are doing wrong. There are effective medicines but you have to try them until you find the one that works. Until then, my heart goes out to you, and I will pray for you! Hang in there.
Posted: Sat Jun 05, 2004 12:37 pm
I am on 1.5 mg of mirapex a night and 1 mg of clonazapam and have had no obvious side effects over the 3 years I have been on it. The doctor added the clonazapam to increase the effect of the mirapex.
Posted: Tue Jun 15, 2004 2:15 am
I have been on Mirapex (1.0 mg) for about two years and haven't seen any side effects yet. I am also now on Neurontin which mainly seems to have made me gain weight. It's really hard to tell if it helps. But others are right. Keep looking until you find the right doctor and medicine. This site is a great help in supporting RLS sufferers. What a relief to talk to others who know what you are going through.
Posted: Thu Jun 17, 2004 3:41 am
I am new to this site and find it very informative and so very helpful to know how many other people understand what I've been going through for approximately 20 years. I've been taking Mirapex and Clonazepam for approximately 5 years. I go to a neurologist at Barnes Hospital in St. Louis, MO and he recently increased my dosages to 1 mg. Mirapex 2x daily and 2 mg. Clonazepam 1 x daily. This seems to work just fine right now. Unfortunatley every few years it seems that he has to "rework" my meds, but he's a great doctor and that's what it takes!! You just have to find a doctor who really listens and cares!! And they are out there. Unfortunately, too many medical personnel haven't even heard of RLS. For example, I recently had surgery and the anesthesologist kept giving me drugs prior to surgery to put me into twilight sleep. Everything he gave me made my legs go crazy. My husband kept telling him I had RLS--he didn't know what that was. He couldn't believe I wasn't sleepy--he couldn't believe my legs were kicking like crazy!! There were two emergency surgeries before mine and I ended up being in pre-op 5 hours. The nurse finally unhooked me from the IV and walked me for 1 1/2 hours. I had had so much medication my knees buckled, but we walked and walked. I think I could have walked all night!! I don't think they had ever seen anything like it!! Anyway, it has been suggested that I wear a medical bracelet or carry a medical card explaining my condition from now on. I joined the RLS foundation and it states what medications not to give me. Just a thought for anyone out there. Good luck to all of you and take care!!! Jan
Posted: Tue Jun 22, 2004 12:56 am
It looks like you are doing everything by the book (which is nonexistent) and you are right, it is a great fortune to have a knowledgeable sympathetic doctor.
Surgery for us RLS patient must be quite a special event as you so colorfully describe.
. It definitely has to be discussed at length with the surgeon, the attending physician, the anesthesiologists as well as with the nurses. Prior to surgery before they dope one up!
I have seen somewhere a write-up what every RLS/PLM patuints should carry which explain things in an emergency. I shall try to find it.
RLS & Surgery
Posted: Tue Jun 22, 2004 4:22 am
Sounds like you had one helluva adventure with your surgery!
Jumpy is right, there is a document about surgery and RLS, right here on this site.
Below is a link to the pdf document put out by the Foundation. It's Called "Special Considerations of the Surgical Team: When a patient has RLS".
This brief publication is intended for medical professionals. Contents include:
Primary RLS Features
Substances that may be useful to treat RLS
Substances that should NOT be given to RLS patients
If you ever have to go in for surgery again, make sure you have a copy of this with you!
Mirapex (Un)Availability in Australia
Posted: Tue Jun 22, 2004 4:39 am
Have received an email this morning from a fellow Aussie chronic RLS sufferer who resides in Sydney.
Pramipexole, or Mirapex/Sifrol as it's more commonly know in the US/UK is not available in Australia.
Back in April he received an email from the manufacturers of Mirapex/Sifrol which went a little like this, and i quote....
Thank you for your email regarding the availability of pramipexole.
Pramipexole is not marketed in Australia and is not likely to be marketed in the forseeable future.
Please find following a list of international pharmacies from which you may be able to obtain this product.
Senior Medical Affairs Officer
Boehringher Ingleham Pty Limited"
In his email to me today he went on to say that he has found a Neuro in Sydney who is willing to set up a communication line with a supplier in New Zealand. It will be more expensive to get it from NZ than Canada (which was an option we were both exploring), but it's the best they can do at the moment as he must get off the Sinemet ASAP.
His new Neuro also told him that Boehringer Ingelheim had decided not to release pramipexole in Australia even after they obtained the necessary approvals
BUT they will allow Pfizer to market it here instead and it could be available in a year's time!!!
Twelve months...or more...is a loooong time to wait for my fellow Aussie RLS sufferers!!! Not Fair!!!
I'll get off my soapbox now
RLS and surgery
Posted: Wed Jun 23, 2004 2:19 am
This is to Nadia and Jumpyowl. I just saw your reply to my post regarding my recent adventure prior to my surgery. Nadia, thanks for the link to the phamplet. I printed a copy and will be sure to keep one JUST IN CASE!! Don't want to go through that again!!! And Jumpyowl (by the way, LOVE the name!), I'd appreciate any info you could find for me. I'm sure there are others who would benefit from what you could find, also. You just don't realize how much of your life RLS affects, do you? Thanks again!!
Nadia beat me to it!
Posted: Wed Jun 23, 2004 3:24 pm
Hi, Jan: I am glad Nadia found (she is so much better organized than I am) the link I was going to look up for you. So you already have it.
But I keep searching and any time I find something of common interest I post it in agreement with your last sentence in your post:
You just don't realize how much of your life RLS affects, do you?
Yes, we do! This is why we all try to do what we can to learn from and teach each other. As Becat, the artist, says, "we're all in the same boat. let's take turns rowing."
RLS Medical Alert Card
Posted: Thu Jun 24, 2004 9:45 am
In amongst the myriad of information and tips on the Southern California RLS Support Group is a FREE Downloadable RLS Medical Alert Card.
The link to their index page is below and if you scroll through the Table of Contents, Item 16 is the link to the RLS Medical Alert Card.
The card has valuable information about drugs to be avoided for RLS patients and there is also space to add the drugs you are currently taking as well as room for any other medical problems you may be suffering from.
Well worth taking a look!
RLS and surgery
Posted: Fri Jun 25, 2004 1:32 am
I TOLD you I'd learn a lot from you! Thank you so much. I've already printed the medical alert card!! Once again, I'm so glad I found this site!!! I notice with interest that Compazine is listed. After my gall bladder surgery (I don't think I mentioned what type of surgery I had, not that anyone probably cares--ha!), I have been nauseated. My doctor gave me Compazine, and, you can guess, my legs went crazy. I called my pharmasist and he told me that anyone on Parkinson's medication (which, of course, Mirapex is) should NOT take Compazine, I called my doc and went off the Compazine. I just suffer, but I am getting better. If I had had this card, we would have known. I think my pharmasist should have known anyway. Oh well. Maybe not. Anyway, thanks!