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Requip for Dystonia?

ConnieD
159 posts
Sep 12, 2007
10:54 AM
My primary doc wants me to start Requip to maybe help with my foot dystonia and improve my 'quality of life' while we continue trying to get my underlying neurological condition figured out. Have any of you had any help/calming of dystonia using Requip?

Thanks,
Connie

diane33
7 posts
Sep 12, 2007
11:34 AM
Requip is an Excellant drug but makes you very very tired for about two hours after you have taken it. It will make you fall asleep which of course is dangerous.
Good Luck.
Arun
6 posts
Sep 12, 2007
8:03 PM
Requip is an agonist as far as PD is concerned. I've also heard it being used for RLS - restless leg syndrome - but not for Dystonia!!

Good luck anyway

Arun

michelle
55 posts
Sep 12, 2007
9:44 PM
Connie - have you ever taken any drugs targeted for PD? If I remember correctly, you do not have a definitive dx yet, or am I confusing you with Chris? My memory is never very good. Anyway, it seems like a good idea to try it as a dx tool. When I was looking for a dx, they put me on sinemet. I have slight dystonia in my left foot. It fixed everything and helped confirm a pd dx. Then I tried requip. It made me really tired. So, I switched to mirapex. Mirapex works well for me. Now I take amantadine as well. Anyway, I do not have severe dystonia and I am not an expert, but it may help with dx. Good luck.
ConnieD
161 posts
Sep 13, 2007
2:53 PM
Thank you everyone!

Michelle, you are right I do not have a dx. I saw my primary doc last month and I thought we agreed I would get the MS neuro doc to send him my records and we would review them before he referred me to a movement neuro doc at a hospital clinic outside my insurance network. Sadly, I met with my primary doc yesterday and we went through my records and yes, the MS neuro doc and the test results indicate I have central nervous system dysfuction that the MS doc says is movement 'related'. But when I asked about a doc at the hospital clinic, my primary doc backed down saying I've seen SO many docs now this past year it looks like I'm 'doctor shopping' and he wants me to wait till the 1st of the year before he refers me to yet another doc (of course I can't get into this other clinic without a referral). All he said was he was saddened that I couldn't find a neuro doc to take me more seriously- he knows me and has been my doc now for almost 5 years and he feels that if they knew me better they would know I do not fit the 'anxiety/stress ridden' patient profile.

He said he had hoped the Lyrica was going to work for my 'foot cramps' but I told him it wasn't and my 'cramps' are now in my hands and neck as well. He suggested we try Requip as it's good for RLS and perhaps that's 'more' of my problem than anything- although my description of my cramps and other symptoms (tremors, etc.) don't match RLS either. I mentioned again maybe PD and he again dismissed it as I don't have the 'typical' symptoms and I'm 'too young'.

I'm tired of feeling this way- my toes so tight and sore, and my hands are starting to feel that way too. I know Requip is used for PD, but it's prescribed much differently than how it is for RLS, but maybe something will happen while I'm taking it that will help my primary doc start believing maybe I'm right with my thoughts about PD.... sigh, maybe not as I read that Requip can also worsen symptoms if not used properly.

This dystonia by far has been more bothersome than any of my other symptoms- so right now, I want to- feel I must, try this. Maybe it's time to start the anti-depressants again because after yesterday I feel like crying - he was SO ready to refer me to a new doc last month and now he's saying wait 3-4 more months... sometimes you just feel SO defeated! This sucks, but what do I do?! I have to keep hope and stay patient.

Take Care ((hugs)) Connie

michelle
57 posts
Sep 13, 2007
8:25 PM
Connie - I'm so sorry. That seems totally unfair. They agree that you have a central nervous system problem and they agree you need a movement specialist, but you should wait for 3 months to try again? I'm really sorry about that. It's depressing enough to be dx'd with PD or MS or whatever, but I can't imagine how bad it is to feel like this and not have a dx. Hang in there - lots of people support you. Michelle
diane33
10 posts
Sep 14, 2007
4:10 AM
Connie,
Do you have to get referred By your Doctor? It that the type of Medical Insurance you Have?? If not find a good Doctor and go to them.
In all our Misery if we don't like what one is saying(or not) we just move on as we can go to anyone.
It is sometimes time consumming but heck it is our lives and bodies this overpaid overcharged Medical service it charging us all for.
Diane.

Last Edited on 14-Sep-2007 4:11 AM

ConnieD
162 posts
Sep 14, 2007
11:57 AM
Thanks Michelle and Diane! It is SO wonderful to know that people here care- it's why I love coming to this board.

I had a long talk with my husband last night and he suggested I try to get into the clinic without a referral. I called the clinic this morning and they were dead set that I have a referral. I mentioned that my primary doc wants me to wait another 3-4 months trying this new med first and she told me it will take me that long to get to see a new doc there with a referral and if I had to, to go to just any family doc and demand a referral from him/her so that I could speed up the wait.

So, I was planning on doing that when my husband called- my physical therapist who's been working with my back and leg since my back surgery called. She wants to see me tonight. She had mentioned last month that I needed to get into this clinic but that she was hesitant on referring me as she wasn't a physician, nor was she able to confirm any of my symptoms other than believing me when I told her about the dystonia, my swallowing issues, and other things. She left a message for me to bring a brief symptom list and that she had information to share with me and that she was sorry it had taken her so long.

Whoopee- sounds like she may be referring me to this new clinic soon! All I will have to do is go get some of my records from my primary doc... and I'll put the heat on him again that I'll be waiting months to get into this clinic so he needs to put a referral in for me now too!

My symptoms list is 1 1/2 pages long- I tried to be brief, describe in detail the symptom, when it first started and how frequently it occurs. Also I tried to include pretty much all my symptoms as some date back several years and have just resurfaced. Too long a list- should I condense it more? Also, should I put on the list my daily migraines that suddenly stopped in 1998 and I've had only 1 or 2 per year since, if that- is that a good thing to list?

Thanks again! Now I'm all excited and hopeful again- yay!! Have a great weekend!

((hugs)) Connie

gem
118 posts
Sep 24, 2007
2:42 PM
Connie, beware of taking Requip for the dystonia! the other's are right, it will put you to sleep, it did me for two hours unexpectedly, at my old job, and now i am not there anymore. ( got fired 2yrs later for that old infringement since they had no other) My friend does take it for her RLS, ( she has got MS) but a very low dose. I took 5 mg every 4 hrs, and it made me sometimes very in-coherent, but always sleepy, I Even would fall asleep standing, or in the middle of a conversation, and made no sense when I woke up and tried to p/u the conversation, I was talking as if my dreams during my 'nap' really happened, but nobody knew it but me, the conversation was all out of context. At that previous job, after I fell asleep, I awoke 30 min before my quit time, said something unintelligble, and drove home, never recalling this, till they told me 2 days later. Of course I asked them why they let me sleep, not one has a good answer--some 'friends' fairweather ones for sure I later found out .
Anyway, I , for one, am better off out of that place with people and bosses like then, not a compassionate bone in any of them, and it was a medical diagnostic place. even gave me an mri for free to see if I had a tumor before my dx. I think they would have been nicer if it was terminal, but it's not.

Like I and all here have warned, take care with Requip, it
doesn't help with dystonia

dab810
79 posts
Sep 24, 2007
4:52 PM
Connie I have followed your posts for sometime and it appears you may be getting close to a diagnosis. I think of you when I recall my retired MD who had a sign in his office" maximum 2 complaints per visit".... he didn't like to be overwhelmed with symptoms, just the current complaints...no history. Your case is so complex, I hope you don't get the "run around " again. I truly hope you get a favourable diagnosis. All the best to you and your family. Dave
robert
13 posts
Sep 24, 2007
4:54 PM
OK then, if requip doesn't help, what DOES help with cramping and dystonia?

According to Michelle, she has had success with Amantadine and Mirapex fortunately.

I already heard about drinking tonic water, which does help somewhat when you're home.

Anyone else have any suggestions?

dab810
80 posts
Sep 24, 2007
5:00 PM
Robert, My neuro recently recommended Vitamin E along with tonic water for cramps.. I haven t picked up any yet but it might help... worth a try. Dave
gem
121 posts
Oct 30, 2007
4:17 AM
Robert, my mom once told me to eat lots of foods with potassium in them ( re: banana's or grapes) Said she'd read that it helps lotw; I haven't tried it coz I don't like banana's and don't eat grapes, or much other fresh fruit. Raisin's I will eat, but don't know if they have the same amt of potassium.

~~* gem *~~