Requip - Not a Promising Start

Madalot wrote:Interesting that they have beds that do that though...

Yep, the do! And they are just mattress pads, basically, so there is not the expense of a whole new bed. Might be worth looking into, if you think it might help. I think any DME that has hospital beds would also have them. I think they were called something like "alternating air pressure mattress pad".

jbn3boys wrote:

Madalot wrote:Interesting that they have beds that do that though...

Yep, the do! And they are just mattress pads, basically, so there is not the expense of a whole new bed. Might be worth looking into, if you think it might help. I think any DME that has hospital beds would also have them. I think they were called something like "alternating air pressure mattress pad".

I will put this on the list of possible things to try down the road if need be.

As far as my Primary Care is concerned, I don't disagree. I've got a week to figure out how to broach it with him. If he says he won't act as a coordinator, I can't dump him because there are no other Primary Care docs in the city (closest to my house) that will take me on. Several of them turned me down flat because of my neuromuscular disease -- my last PCP (he moved out of the area) said that many of the doctors in the city are afraid of a patient with a condition they don't understand -- that's me, the enigma.

Hubby picked up the Mirapex prescription and the dose is half of what Requip was and stays at that for a week without increasing. I'll start it tonight and hope for the best. Please keep your fingers crossed that I don't have any "unpleasant" (that's being very polite) side effects from it.

I know I've asked this a dozen times, but I'll ask it again -- are we having fun yet? I'd really like to know if this is supposed to be fun for me. I say this as I desperately need to sleep, can barely keep my eyes open, but WANT to stay awake since it's getting so late in the day.

Madalot wrote:Hubby picked up the Mirapex prescription and the dose is half of what Requip was and stays at that for a week without increasing. I'll start it tonight and hope for the best. Please keep your fingers crossed that I don't have any "unpleasant" (that's being very polite) side effects from it.

I know I've asked this a dozen times, but I'll ask it again -- are we having fun yet? I'd really like to know if this is supposed to be fun for me. I say this as I desperately need to sleep, can barely keep my eyes open, but WANT to stay awake since it's getting so late in the day.

I really feel for you, Maddie! I sure wish I could offer some help or at least some hope. I do feel as though I understand being an enigma, although not to the extreme that you are. I don't have doctors turning me down, I just have them not listening to me, not understanding me, and not believing me, mixed with the fact that things that "should" work for me, don't. Yep, fun isn't it? NOT!

What dose of Mirapex are you starting at? I think I started at 0.125, if I remember right. I'm now up to 0.375. I'm still not sure just how much it is helping, since we changed so many things at once, and are continuing to change things. Overall, my AHI has improved, and I've had days of feeling pretty "normal", but they are not consistent by any means. Sometimes I just long to be "normal"--whatever that means!

madalot,

No advice, but lots of {{{hugs}}} and best wishes for the trial dose of Mirapex tonight.

jbn3boys wrote:What dose of Mirapex are you starting at? I think I started at 0.125, if I remember right. I'm now up to 0.375. I'm still not sure just how much it is helping, since we changed so many things at once, and are continuing to change things. Overall, my AHI has improved, and I've had days of feeling pretty "normal", but they are not consistent by any means. Sometimes I just long to be "normal"--whatever that means!

This is my starting dose on Mirapex as well. The Requip dosage was 0.25 and we were supposed to be doubling after two days, then doubling again after four days. With Mirapex, he's leaving me at 0.125 for a week, then doubling and leaving there for another week, assuming I don't have any problems with it.

I wouldn't worry about doing any of this if I was just waking up, but not suffering any ill effects from it. The daytime fatigue is bad enough, but it's getting so beyond that it's not funny.

I'm beginning to realize that while I may have been really ticked off about the sleep study (and the resulting tennis balls recommendation), I AM beginning to see the logic behind it. I'm complaining about waking up so much and excessive daytime fatigue. They determined that IF I sleep supine, I have SERIOUS trouble, so they assumed that as a likely possibility and went from there. And my denial of sleeping supine was met with fairly typical suspicion.

The fact that my pulmo agreed to change the focus and contact my neurologist, even though she still wasn't 100% convinced that I don't sleep supine, is a good thing -- and she gets a point for that.

The fact that it's taking me this long to "get it" is yet another indicator of how bad the situation is becoming. I can't focus enough to understand something like this more quickly.

robysue wrote:madalot,

No advice, but lots of {{{hugs}}} and best wishes for the trial dose of Mirapex tonight.

Greatly appreciated. I will deal with most of the side effects, but if the "other" one happens again, I'm done again. Let's hope it doesn't happen again, especially in a slightly different medication at a lower dose...

They're compression devices that prevent Deep Vein Thrombosis by squeezing the legs to increase blood flow in lower extremities, especially after surgery. I seem to remember someone suggesting a video of you sleeping which would answer the question, does she or doesn't she sleep supine? Any chance of doing that? We're all trying so hard to come up anything that might help you. Good luck with the Mirapex.

DoriC wrote:They're compression devices that prevent Deep Vein Thrombosis by squeezing the legs to increase blood flow in lower extremities, especially after surgery. I seem to remember someone suggesting a video of you sleeping which would answer the question, does she or doesn't she sleep supine? Any chance of doing that? We're all trying so hard to come up anything that might help you. Good luck with the Mirapex.

You are so right, Dori -- about the compression devices AND the fact that everyone is trying to come up with ideas to help. I do appreciate it - more than I am able to express, especially now that I am sinking so fast into this abyss of fatigue and overall feeling lousy.

I had investigated getting a video camera but bagged it when we decided on the sleep study. I may need to revisit that, but -- my neurologist seems to have let go of the idea about my sleeping supine, so I may not need to prove that. But it's an idea to keep in mind.

I'll be taking the Mirapex soon and hoping that I at least can sleep with it. I'll let you know...

Got my fingers crossed on the Mirapex.

((( mad )))

I pray you slept well last night, and have a bit more energy for today!

Took my first dose of Mirapex last night. I had similar weird feelings -- jumpiness, palpitations and just overall feeling yucky, but it was more tolerable so I stayed in bed and eventually fell asleep. Sleep wise, nothing was different, but I didn't expect it to be. The alarm went off at 6:30 and my husband, knowing how tired I have been, offered to get up and "referee" the kids if I wanted to stay in bed. I took him up on it and slept, on and off, until 10, when I just had to use the bathroom.

So far, no sign of the "other" side effect, so I am cautiously optimistic that Mirapex, lower dosage and slower titration, might work out better. Because of the way we're doing this, however, I don't expect to see any results, sleep or leg movement wise, for a while. Being able to tolerate the medication is all we're worried about right now.

I still feel horrible overall and I've only been up for 2.5 hours and am already getting that sleepy feeling like I need a nap.

So, we'll see.

They recently renamed RLS to Wittmaack-Ekbom Syndrome....though I think I'll stick with RLS.

But, basically it can affect more than just legs....

My primary didn't get that PLMD is different than RLS, so it wasn't until I was seeing a neurologist that I could get something for RLS. Though I pretty much don't hide the need to move my legs anymore, so it was pretty obvious that I likely had RLS...I think he's the only doctor that had ever asked by the something is crawling on or under my skin sensation.

I think I remember it was mainly my legs when I was younger, but I had been noticing it the last few years in my arms. I may have had it in my arms too back then, I'm not sure. Probably didn't think as much about it, because I've always worn short sleeves....but wearing shorts has been a more recent development.

Anyways... I originally started on Mirapex, but I couldn't sleep for the first few hours and was miserable too.

I started with .25mg for a week and then went up to .5mg.

I'm now on Ropirole (Requip)....started on .25mg for 3 days, and then .5mg for 3 days, and then .75mg for 3 days, and now 1mg....

At least it doesn't seem to be interfering with my sleep, of which I've been doing a lot since I got a spinal tap last Thursday....

The Dreamer.