Just have to get this out somehow

Post by **ViewsAskew** » Wed May 03, 2006 8:47 pm

If it feels like it's worse, I wouldn't take more than a few doses. Again, I'm not a doctor, but I can't recall anyone saying their RLS got worse with a DA - maybe the side effects made it impossible to take it, or it didn't help at a low dose, but not worse.

Em, hang in there. I feel so badly for you and wish I knew how to help. Please know that I am thinking of you. DO try to take solace in that the first few doses of the DAs can seem pretty bizarre. I didn't sleep at all the first night - weird dreams, strange feelings, lucid dreaming. Then , then next day I had tremors I'd not ever had before. I was terrified. By the third of fourth dose, most of that had cleared and I was doing better with it. They always, however, made me very, very tired. I could never take them in the daytime. Remind me, when you are feeling better, to tell you about my experience with sex, Mirapex, and falling asleep :oops:

.

ksxroads · Post by **ksxroads** » Wed May 03, 2006 9:11 pm

If she doesn't, Ann, I'm certain WAM will or I will! *BIG GRIN*

I took the Requip only at night. First night I slept beautifully and thought Thank you God.

I had been through a HORRID week of the dr prescribing a variety of medications. Each night following the first requip dose the mental and physical side affects worsened, however as Ann has mentioned the RLS sensations were gone. On all the DAs I experienced problems with insomnia, wierd irrational thinking, and during the day episodes of unconciously falling asleep... I would be up getting ready for work, fix breakfast sit down to watch a minute or two of the news and find myself waking up and an hour had passed.

Let me add my supportive thoughts and prayers to Ann's. We do know what you are going through, and I truly pray that you will find some relief soon. Hazel

Anonymous · Post by **Anonymous** » Wed May 03, 2006 9:20 pm

I should mention that I am experiencing as much restlessness in my left leg as usual, the drug hasn't seemed to affect that at all. So, maybe the starting dose just isn't large enough to make a difference? How much did you all have to take before noticing any improvement? Sprry I'm so high maintenance...

Post by **ViewsAskew** » Thu May 04, 2006 5:57 am

I can't answer that; I didn't have RLS much at all when I started on it - I had severe PLMD (kicking all night). So, I never knew if it worked in the beginning. Unfortunately, a low dose of the drug caused augmentation of my very mild RLS and I ended up with daily RLS within two weeks. The doctor told me to take it earlier, I did, and the RLS was gone. So, I guess, it worked the first dose. But it was working on the RLS IT had created. It was pretty fracked up, as they say on Battlestar Gallactica.

How much are you taking? .25 mg? Since the average dose is 1 to 2 mg, I would think you'd need to get to at least 1 mg, and preferably 2 (if it doesn't work sooner) to rule it out. That will take awhile it you titrate every 4 days, which might be fast in terms of causing side effects. Some people titrate only once a week to better avoid the side effects.

BTW, did you know that if you are not allergic to them, opioids really work for most of us? They just don't always work, but mostly they do. Ultram, Oxycontin, Vicoden - these are the best choices (in terms of being strong enough), as some of the others may not be strong enough. I wouldn't ever advocate taking a script not for you, or self-medicating from drugs leftover from another surgery or something, but just more information for you in case this doesn't work. Many of us have inadvertantly taken this class of drugs only to find it was the first time we felt OK. It's the class I take all the time.

Anonymous · Post by **Anonymous** » Thu May 04, 2006 1:48 pm

jan3213 · Post by **jan3213** » Fri May 05, 2006 12:49 am

Hi, it's Jan

Boy, you've been having a hard time. I really hope your doctor works with you in getting you on the right medication.

I just wanted to say one thing: Don't ever think you are "high maintenance" here. I've been a member almost two years, and I still need support, advice and to just vent every once in awhile. In fact, I almost wrote a post in the middle of the night---just to vent.

We all learn from one another, we all receive and give support here. So, please, don't ever feel like you need to apologize.... As the tag line on Becat's messages reads: "We're all in the same boat, Let's take turns rowing."

Jan

Post by **ViewsAskew** » Fri May 05, 2006 5:30 am

Em, ditto what Jan said.

You mentioned that the Klonopin helps your legs, I think. You know, it really doesn't make sense that it would help your legs and not your face if it's the same thing. I guess it could be that much worse - but the timing doesn't really make sense, either. . .

Seriously - write Dr Buchfurer - www.rlshelp.org. He really is good about responding and if anyone knows anything about this, it will be him. He's even chatted to Hazel's doctor after she brought in an email from him (her doctor approached him, asking for more information). We are all clueless and I already feel like I made your like miserable by even suggesting you try the Requip - especially since I flunked chemistry :wink:

.

Anonymous · Post by **Anonymous** » Fri May 05, 2006 2:06 pm

Anonymous · Post by **Anonymous** » Sat May 06, 2006 1:35 pm

Penguinrocks · Post by **Penguinrocks** » Sat May 06, 2006 2:58 pm

There is not even a need to ask EM.

OF COURSE you can stay and get all the support these wonderful people can give!!!!!

We ALL have to stick together!

Me? I'm having more and more tremors...?????????

I wonder if I have the wonderful combo of RLS/PLMD/Fibro/Essential Tremors OR Parkinson's onset.....

sigh

At any rate, PLEASE PLEASE stay and be part of our family!!!

Love Penguin

Post by **ViewsAskew** » Sat May 06, 2006 5:57 pm

Penguin - how's the LOA going? I hope you're getting some stress-relief, however worrying about tremors won't help relieve stress!

It could be any of those things. . .and none of them. It could be the stress combined with the meds. I'm sure you've already done this, but please see your doctor. And, I know this would be difficult to do, but consider a completely new doc. Sometimes someone new can see with a fresh perspective - it's not that your doc isn't wonderful, but when you're close to things, you can miss things. Of course, sometimes they can be complete %$#@$, too.

Em, it's a good group here and you're now part of it whether you want to be or not! So, hang around and enjoy

Post by **ViewsAskew** » Wed May 10, 2006 8:10 pm

Em, I just ran across this post on another RLS board. The poster says that his/her experience is primarily in the face:

http://www.wemove.org/ubb/ultimatebb.ph ... 1/602.html

Maybe you could post and ask some questions about that person's experience.

Anonymous · Post by **Anonymous** » Thu May 11, 2006 9:20 pm

becat · Post by **becat** » Thu May 11, 2006 9:31 pm

Hello to all
On this subject, EM, thought I'd tell you about my grandmother's RLS.
Yes, her legs hurt, HURT, her for some 65+ years every daggguummm day and night, but!
One of her biggest irks about "whatever" she had, which was severe RLS, was her scalp and her right ear. I mean everyday, all day. No she never knew what she had til I got dxed and got educated about RLS.
Poor thing, it made her nuts somedays.
So the real fact is that docs need to catch up with what we all know that RLS is a whole body issue.
Hugs to all
Lynne