Requip - Not a Promising Start

robysue wrote:Maddie,

I am so sorry you're having even more problems. However 3--4 hours of sleep without waking up is 3--4 hours of sleep without waking up. To heck with realizing you woke up on your back if that 3--4 hours of sleep FELT good. Maybe your idea of taking the Requip earlier than the recommended 1 to 2 hours before bed will make it more tolerable.

I would agree, but for the fact that while I may not realize I wake up, there seems to be proof that when I sleep on my back, the ventilator, at its current settings that work great on my side, CANNOT maintain my breathing. I shouldn't sleep on my back no matter what...

I could always sit up all night!!

Madalot wrote: As far as some of the side effects, I guess this is another case where they don't believe me. He said that typically, Requip puts you to sleep, NOT keeps you awake. "Trouble Sleeping" was in the list of side effects that should be reported to the physician immediately, but whatever.

He also said that the other side effect can't be from the Requip and that I should call my primary doctor about it. I don't know -- maybe it IS just a coincidence, but it's a little too coincidental that the day after starting this medication, I start bleeding from my rear end (sorry -- probably TMI).

He said he would speak with MY doctor and ask him and get back to me.

It may not be the Requip but the interaction it is doing with the rest of your meds or vice versa?

robysue wrote:I so identify BlackSpinner: For years I've more or less ignored my (moderate) migraine pain even as it became chronic because the pain was easier to deal with than meds. Unfortunately, it's hard to teach when you feel like you might fall over due to vertigo and the vertigo turns out to be migraine-related. The search for a migraine med that I can tolerate remains active: The NP is having me discontinue the depakote after a few days of weaning due to its playing havoc with the insomnia and triggering mood and anger problems. *sigh*

Yes - the ergot turned me into the nastiest zombie this side of Hell and one of the pain meds gave me the most beautiful hallucinations/dreams ever. The day I caught my self wishing for a migraine so I could take them, I flushed them down the toilet.

BlackSpinner wrote:

Madalot wrote: As far as some of the side effects, I guess this is another case where they don't believe me. He said that typically, Requip puts you to sleep, NOT keeps you awake. "Trouble Sleeping" was in the list of side effects that should be reported to the physician immediately, but whatever.

He also said that the other side effect can't be from the Requip and that I should call my primary doctor about it. I don't know -- maybe it IS just a coincidence, but it's a little too coincidental that the day after starting this medication, I start bleeding from my rear end (sorry -- probably TMI).

He said he would speak with MY doctor and ask him and get back to me.

It may not be the Requip but the interaction it is doing with the rest of your meds or vice versa?

Well, this was a good idea so I went to three different websites to check drug interactions and couldn't find any.

I really don't know whether to take it or not tonight. Naturally, that doctor never called me back, so I'm on my own with this I guess. I'm really not sure I should based on this, uh, other problem I'm having. If I knew for sure it wasn't the Requip, I'd take it.

Madalot wrote: He also said that the other side effect can't be from the Requip and that I should call my primary doctor about it. I don't know -- maybe it IS just a coincidence, but it's a little too
Well, this was a good idea so I went to three different websites to check drug interactions and couldn't find any.

I really don't know whether to take it or not tonight. Naturally, that doctor never called me back, so I'm on my own with this I guess. I'm really not sure I should based on this, uh, other problem I'm having. If I knew for sure it wasn't the Requip, I'd take it.

Really sorry to hear this, Maddie, and I can sympathize with the uncertainty about taking it. Don't you just love it when they tell you some side effect CANNOT be from the med in question?? I have been through that one more than a few times and in my mind ( non-physician that I am) if I experience something unpleasant when I take something and it goes away when I stop taking that something, it WAS a side effect! I like to call that the "duh" effect.
I am guessing you found nothing in your reading about Requip related to the other problem you are having.

Jeanette

newhosehead wrote:

Madalot wrote: He also said that the other side effect can't be from the Requip and that I should call my primary doctor about it. I don't know -- maybe it IS just a coincidence, but it's a little too
Well, this was a good idea so I went to three different websites to check drug interactions and couldn't find any.

I really don't know whether to take it or not tonight. Naturally, that doctor never called me back, so I'm on my own with this I guess. I'm really not sure I should based on this, uh, other problem I'm having. If I knew for sure it wasn't the Requip, I'd take it.

Really sorry to hear this, Maddie, and I can sympathize with the uncertainty about taking it. Don't you just love it when they tell you some side effect CANNOT be from the med in question?? I have been through that one more than a few times and in my mind ( non-physician that I am) if I experience something unpleasant when I take something and it goes away when I stop taking that something, it WAS a side effect! I like to call that the "duh" effect.
I am guessing you found nothing in your reading about Requip related to the other problem you are having.

Jeanette

Thanks, Jeanette. The doctor never called me back yesterday (big surprise there). I really didn't know what to do last night, but my husband was pretty adamant about NOT taking it to see if the "problem" stopped. It was still going strong when I went to bed (lovely) but had stopped as of this morning. I'll see how I do through the day and if it doesn't come back, I think it's safe to say it WAS the medication.

In my internet search, I found ONE reference to Requip causing this type of problem, but that's it. But I DID find the one reference.

What's interesting is I was so tired last night and feeling so awful, I fell asleep (on my side) at 10:30 and I didn't move at all until 4:45 this morning. It was great, except I was in so much pain when I woke up I could barely move and moaned enough that I woke up my husband!

It's looking more and more likely that I'm going to have to deal with the awakenings and resulting daytime fatigue. No matter what we try to do to fix it, other problems surface.

Hi Maddy, it is interesting and kind of nice to see you slept for 6hrs straight so we don't know if it's possible that the Requip kicked in(even though you didn't take it last night)? Does your husband witness your PLMs? I've also heard that Mirapex is relatively problem-free for most people. What type of pain are you experiencing? I'm sure you've checked out your mattress, pillows, etc? How is that "other" problem? Do you have a hx of that or is it just out of the blue? It's so hard having to advocate for ourselves or our loved ones, isn't it? Sending you good thoughts.

Thanks, Dori. The "other" problem is MUCH better today, although I still feel a bit yucky overall.

As far as the pain....

Back when I first started having breathing issues at night, I found that sleeping on my left side was better. I have found that I almost always start on my left side and if I wake up, I'll turn to my right side some, but usually am just way more comfortable sleeping on my left side.

The problem I have is that in 2001, I had a muscle biopsy on my left thigh. Even though all my doctors say it's not possible, my left thigh has bothered me, on and off, ever since. I'm guessing that sleeping on my left side so much has caused that thigh muscle to be aggravated even more (my neurologist referred to it as pressure pain) and if I stay on it like I did last night (6+ hours without moving), I'm in agony when I wake up.

So, maybe the awakenings are a blessing in disguise, even though I suffer for it during the day.

No easy answers.

Maddy, you just can't seem to catch a break. I've used Requip with no side effects. Never used Mirapex. I'm currently on gabapentin, which seems to work pretty well. The gabapentin keeps my leg movements at bay 24 hours a day, which neither Requip nor Sinemet ever did.

Robespierre wrote:Maddy, you just can't seem to catch a break. I've used Requip with no side effects. Never used Mirapex. I'm currently on gabapentin, which seems to work pretty well. The gabapentin keeps my leg movements at bay 24 hours a day, which neither Requip nor Sinemet ever did.

LOL -- I kind of feel that way too. I'm irritated that the doctor never called me back yesterday and I've been completely left hanging with no medical input as to what I should do. It seems reasonable to me that the "other" problem is much better today after NOT taking Requip last night. Still could be a coincidence, but even if it is, it doesn't change the fact that within an hour after taking it the other night, I felt totally drugged out and was jumping out of my skin, unable to sleep. It irritates me as well that other doctor said trouble sleeping wasn't possible, despite my seeing it myself in the side effects (which I did NOT look at until AFTER I had the reaction). I'm not taking anymore Requip at this point.

I take Gabapentin myself, 600mg nightly that was prescribed for the muscle pain in my legs.

In truth, I'm not sure how much the leg movements are really impacting my situation. Perhaps some, but I still have concerns about how they weren't addressing that at all until I got nasty about the supine sleep statements.

I finally gave in for the first time today and got in bed, hooked up to everything for my nap. I slept from 12:30 - 2:00, then dozed back off until the phone woke me up around 3:00. And to make my point (mainly for my doctor who obviously still won't believe me), I started out on my left side, woke up at 2:00 STILL on my left side and stayed there until I got up at 3:00. Never once, while sleeping for almost 2.5 hours, did I move off my left side, let alone turn onto my back.

Madalot wrote:My neurologist feels that taking Requip for the leg movements is a sensible thing to try and I started it tonight. This is NOT starting out well in that within an hour of taking it, I was having hot/cold flashes (back and forth driving me crazy), increased thigh pain on my left side (my preferred sleeping side), and weird chest pain. But worst of all -- I can't sleep. I tried for over an hour, but got out of bed and gave up.

Finally there is something in your complex situation that I know something about!

If I take my Requip without food, I experience nausea, hot/cold flashes, and room spinning dizziness. It's so bad that I have to lie completely still with my eyes closed and not move, but also can't sleep. The first time it happened, I also vomited for several hours. It was kind of like after a drinking binge without the drinking--just miserable. I was so shocked the first time that I though I had food poisoning or the flu, but my doc said that is a very common side effect and that taking it with food is not an option. It only happens if I take the meds on an empty stomach, but it happens without fail. I try to have a bit of yoghurt or a piece of toast, even a soda cracker washed down with half a glass of milk. I've forced myself to eat a bit of whatever there is, even if I hate it, because the alternative is so miserable.

I also had to start off with a really small dose and work my way up. How much are you taking?


r

Rebecca R wrote:

Madalot wrote:My neurologist feels that taking Requip for the leg movements is a sensible thing to try and I started it tonight. This is NOT starting out well in that within an hour of taking it, I was having hot/cold flashes (back and forth driving me crazy), increased thigh pain on my left side (my preferred sleeping side), and weird chest pain. But worst of all -- I can't sleep. I tried for over an hour, but got out of bed and gave up.

Finally there is something in your complex situation that I know something about!

If I take my Requip without food, I experience nausea, hot/cold flashes, and room spinning dizziness. It's so bad that I have to lie completely still with my eyes closed and not move, but also can't sleep. The first time it happened, I also vomited for several hours. It was kind of like after a drinking binge without the drinking--just miserable. I was so shocked the first time that I though I had food poisoning or the flu, but my doc said that is a very common side effect and that taking it with food is not an option. It only happens if I take the meds on an empty stomach, but it happens without fail. I try to have a bit of yoghurt or a piece of toast, even a soda cracker washed down with half a glass of milk. I've forced myself to eat a bit of whatever there is, even if I hate it, because the alternative is so miserable.

I also had to start off with a really small dose and work my way up. How much are you taking?

I appreciate your sharing this information, Rebecca. I don't think you have any clue how validating it is, for me, to hear that somebody else had problems with Requip. The way that doctor spoke to me (not MY doctor, but the one that called on his behalf) had me believing that I am truly insane.

I didn't take the Requip on an empty stomach. I had a snack right before I took it.

The dizziness, hot/cold flashes, nausea and restlessness -- I could have dealt with that and would have kept taking it, hoping to acclimate, but that bleeding problem worried me, so I never took a second dose. Despite that doctor's absolute insistence that Requip COULD NOT have caused the bleeding, it has completely stopped. Too bad nobody has bothered to call me back, as promised, so I could advise them of that fact and that I have stopped taking the medication.

I am not being difficult, lying, in denial or any of the other things that have been implied in the last couple weeks. I do NOT feel well on so many levels. I wake up 4-10 times per night and am so tired during the day that I require serious sleep during the day (that after sleeping anywhere from 6-12 hours the night before). And the best they can give me is to stay off my back, which I already do as a matter of comfort, but they think I'm lying about that and treat me like a child that just can't possibly understand or know any better.

These people are making it too hard for me. I've been saying for MONTHS that IF the settings on the vent are the best that we can do, I'll learn to live with the resulting problems. I don't like it, but reality is reality. But they're NOT saying that, but telling me to sew tennis balls in my PJ's and just stay off my back. Then when I insist I already do stay off my back and ask about the leg movements, they agree to try a medication for that (to pacify me I guess) but then ignore me when I report significant and potentially serious side effects.

I quit. It isn't worth the aggravation they put me through. Being able to breathe at night just isn't worth this. I think I'd rather just suffocate.

But I really do appreciate your saying that Rebecca. It gives me a bit of a boost -- I'm not crazy, they just aren't listening.

Madalot wrote:
I appreciate your sharing this information, Rebecca. I don't think you have any clue how validating it is, for me, to hear that somebody else had problems with Requip. The way that doctor spoke to me (not MY doctor, but the one that called on his behalf) had me believing that I am truly insane.

It reminds me of the many times I heard "Just take a hot bath before bed" "or "There's nothing wrong with your sleep." I wish doctors knew exactly how wrong they are when they act like people are insane! They should have to be subjected to similar treatment as part of their training....

FWIW my doctor didn't even bat an eye when I reported those symptoms.

I didn't take the Requip on an empty stomach. I had a snack right before I took it.

Darn. I was hoping that might be the answer. The Requip does work for my limb movements--proven by a sleep study. It wears off very early in the morning though.

The dizziness, hot/cold flashes, nausea and restlessness -- I could have dealt with that and would have kept taking it, hoping to acclimate, but that bleeding problem worried me, so I never took a second dose. Despite that doctor's absolute insistence that Requip COULD NOT have caused the bleeding, it has completely stopped. Too bad nobody has bothered to call me back, as promised, so I could advise them of that fact and that I have stopped taking the medication.

Please check with your own doctor about that symptom! I didn't have that side effect.

I am not being difficult, lying, in denial or any of the other things that have been implied in the last couple weeks. I do NOT feel well on so many levels. I wake up 4-10 times per night and am so tired during the day that I require serious sleep during the day (that after sleeping anywhere from 6-12 hours the night before). And the best they can give me is to stay off my back, which I already do as a matter of comfort, but they think I'm lying about that and treat me like a child that just can't possibly understand or know any better.

These people are making it too hard for me. I've been saying for MONTHS that IF the settings on the vent are the best that we can do, I'll learn to live with the resulting problems. I don't like it, but reality is reality. But they're NOT saying that, but telling me to sew tennis balls in my PJ's and just stay off my back. Then when I insist I already do stay off my back and ask about the leg movements, they agree to try a medication for that (to pacify me I guess) but then ignore me when I report significant and potentially serious side effects.

They are the ones who don't understand and don't know better.

I quit. It isn't worth the aggravation they put me through. Being able to breathe at night just isn't worth this. I think I'd rather just suffocate.

I hope you are just frustrated (as anyone would be) and don't really mean that.

But I really do appreciate your saying that Rebecca. It gives me a bit of a boost -- I'm not crazy, they just aren't listening.

No, they aren't listening. But we are.


r

Maddy, I really do understand how much it means to be heard and validated. After all the back and forth we had these last few weeks with doubts,second opinions, family discussions and lots of tears, what really meant the most to me yesterday was our surgeon simply saying "I know this is very hard for you and I wish I could make it easier". No medical person had ever acknowledged my pain before, so even though we're sort of back to square one(although I think I'm seeing a little improvement?), I'm in a better place emotionally because I know he cares and isn't giving up on us and I feel encouraged to be more patient for awhile longer. Don't know if it makes any sense but what's most offensive to me is that no one got back to you with some direction about a serious side effect to your meds. Even if they had no definite answer you wouldn't be feeling so abandoned. Whoever said you can't catch a break is right. I wish I could come there and help you but I'd probably have to stand in line behind all the others here. Stay strong!

I had a "discussion" with my husband today and he made the mistake of asking me if I WANTED to attend a family function next weekend.

I went off the deep end saying that it's not a matter of "wanting" to do anything -- it's a matter of feeling too tired and too sick to do anything. I started screaming at him (I feel bad for it, but...) that I WANT to go to all functions, I WANT to go grocery shopping, I WANT to drive myself to doctor appointments, I WANT to work, I WANT to cook and bake, I WANT to do all the paperwork cluttering my desk, I WANT to go out to dinner with him -- but I feel too lousy to do any of it.

Yes, the kids were gone today and he offered to take me out to dinner, something I love to do. That would have been such a treat -- dinner out without the kids. I said I didn't feel up to it and promptly fell asleep in my recliner -- again.

I really had such high hopes in November of 2009 after my titration study, thinking that using a cpap/bipap machine would give me a boost of strength and solve an issue to make me feel like living again. Not only has that NOT happened, I'm more tired and feeling worse than when I started all this.

The only reason I've not given up is because I cannot breathe when I lay down. I feel it. It's uncomfortable and it's scary. The machine DOES make that better and I can usually breathe. I told my husband this morning that if not for the kids being up (I heard them) I think I could have stayed in bed all day and slept all day. So, I get up every day...but the price I'm paying in daytime fatigue -- it's not worth it. I'm turning into a vegetable and it's no way to live.

And yeah, I am pissed beyond all belief at my neurologist. I am going to give him the benefit of the doubt and say that he turned my call over to a colleague and is assuming everything is under control and has no idea that I got left hanging. If I don't do that, I'd have to dump him and frankly, I've got nowhere else to go for my neuromuscular disease.