Mirapex?

[KTinTexas]

The PA at my sleep doctor now says to try Mirapex because I move around so much at night. I'm concerned about adding this medicine. Have others had good experience with this?

[zonker]

The PA at my sleep doctor now says to try Mirapex because I move around so much at night. I'm concerned about adding this medicine. Have others had good experience with this?

while waiting for someone with experience to show up, see this thread for some info-

viewtopic.php?f=1&t=174600&p=1287926&hi ... x#p1287926

i found it by putting the word "mirapex" in the forum search box. there were 615 hits returned.

if this particular thread i linked to doesn't help, maybe one of the others will.

good luck!

[kteague]

Wondering a bit about your background - forgive me if you (or even we) have discussed this before. My memory is not playing its A game lately. Were you diagnosed with periodic limb movements on a sleep study? In my opinion, generic "moving around a lot" is not cause to take a dopamine agonist. Some people move a lot during apnea events. Others with chronic pain. Some just can't get comfortable.

If one has urges to move with RLS that account for moving around a lot, Mirapex MAY be of some benefit. If one has PLMD, Mirapex MAY be of some benefit. Otherwise, no. This med is not to be taken lightly and I don't agree with trying it just in case it helps without a diagnosis or at least some investigation first. I realize some docs try the med as a diagnostic tool. If it helps, it's PLMD. Even then there are some pre-prescription efforts that should be done.

My first consideration would be to determine if the movements could be caused by any med currently being taken. From what I've read, movements secondary to a med are more difficult to manage. Adding Mirapex (which can itself cause worsening movements) to another already potent drug seems such a slippery slope. If that were my situation I'd want to work with my doctor to decide if the problematic med was absolutely necessary, and if possible, either change meds or carefully wean off the offending med. Don't want to make a bad matter worse by ill-advised hasty changes. (Yeah, I already rode in that rodeo and it was a wild ride.)

This is a good time to get some bloodwork to make sure you are not deficient in things pertaining to general health and more specifically to nerve and muscle function. Just a few would be magnesium, B vitamins, iron, vitamin D and especially a Ferritin level (storage iron). Ferritin level is not a part of routine bloodwork so you'd probably have to ask for it. In my opinion a ferritin test should precede ANY consideration EVER of prescribing a dopamine agonist such as Mirapex. Any doctor who doesn't do this first is not knowledgeable enough about this med to be prescribing it. (I know that sounds harsh - just my pet peeve.) For one, people who are deficient ( way below 100) may get relief from the movements just by getting their level up. Those in the know recommend patients with limb movements keep their ferritin level up around 100. Much lower is acceptable to the general population, but is not enough in cases of PLMD. Those in the know also say taking meds like Mirapex with a lower ferritin level puts one at greater risk of having problems with the med such as tolerance and/or augmentation. If you do decide to take the Mirapex, please take the steps above to better your chances. Also, current thinking on these meds is that less is more. If a low starting dose or maybe one step up doesn't help, then you need to weigh the risk of more likely side effects with the lessened liklihood of effective treatment.

Take my words with a grain of salt. My experience with this med was extreme. I have read of people who are really helped by it, as was I at first. When you're desperate, you do what you've gotta do. Another warning if you do take it, even at the lowest dose I had scary sleep attacks. Just be aware of the possibility. For what its worth, once all the meds were out of my system, I found that between taking supplements and using a TENS Unit on my lower back, my movements are manageable.

[chunkyfrog]

I read somewhere that fidgeting burns calories.
My frog brain just went the opposite direction from conventional wisdom.
Pray for me.

[kteague]

I read somewhere that fidgeting burns calories.
My frog brain just went the opposite direction from conventional wisdom.
Pray for me.

lol I should be svelte. Alas, I'm not.

[KTinTexas]

Wondering a bit about your background - forgive me if you (or even we) have discussed this before. My memory is not playing its A game lately. Were you diagnosed with periodic limb movements on a sleep study? In my opinion, generic "moving around a lot" is not cause to take a dopamine agonist. Some people move a lot during apnea events. Others with chronic pain. Some just can't get comfortable.

If one has urges to move with RLS that account for moving around a lot, Mirapex MAY be of some benefit. If one has PLMD, Mirapex MAY be of some benefit. Otherwise, no. This med is not to be taken lightly and I don't agree with trying it just in case it helps without a diagnosis or at least some investigation first. I realize some docs try the med as a diagnostic tool. If it helps, it's PLMD. Even then there are some pre-prescription efforts that should be done.

My first consideration would be to determine if the movements could be caused by any med currently being taken. From what I've read, movements secondary to a med are more difficult to manage. Adding Mirapex (which can itself cause worsening movements) to another already potent drug seems such a slippery slope. If that were my situation I'd want to work with my doctor to decide if the problematic med was absolutely necessary, and if possible, either change meds or carefully wean off the offending med. Don't want to make a bad matter worse by ill-advised hasty changes. (Yeah, I already rode in that rodeo and it was a wild ride.)

This is a good time to get some bloodwork to make sure you are not deficient in things pertaining to general health and more specifically to nerve and muscle function. Just a few would be magnesium, B vitamins, iron, vitamin D and especially a Ferritin level (storage iron). Ferritin level is not a part of routine bloodwork so you'd probably have to ask for it. In my opinion a ferritin test should precede ANY consideration EVER of prescribing a dopamine agonist such as Mirapex. Any doctor who doesn't do this first is not knowledgeable enough about this med to be prescribing it. (I know that sounds harsh - just my pet peeve.) For one, people who are deficient ( way below 100) may get relief from the movements just by getting their level up. Those in the know recommend patients with limb movements keep their ferritin level up around 100. Much lower is acceptable to the general population, but is not enough in cases of PLMD. Those in the know also say taking meds like Mirapex with a lower ferritin level puts one at greater risk of having problems with the med such as tolerance and/or augmentation. If you do decide to take the Mirapex, please take the steps above to better your chances. Also, current thinking on these meds is that less is more. If a low starting dose or maybe one step up doesn't help, then you need to weigh the risk of more likely side effects with the lessened liklihood of effective treatment.

Take my words with a grain of salt. My experience with this med was extreme. I have read of people who are really helped by it, as was I at first. When you're desperate, you do what you've gotta do. Another warning if you do take it, even at the lowest dose I had scary sleep attacks. Just be aware of the possibility. For what its worth, once all the meds were out of my system, I found that between taking supplements and using a TENS Unit on my lower back, my movements are manageable.

I appreciate your informative response. I've been going to a sleep clinic headed by a doctor that's supposed to be one of the best around here. For one thing, I've never seen the doctor. From the beginning, I've been seeing a Physician's Assistant. She did order a blood test for my Ferritin level but did not tell me to wait for the results. She said to go ahead and start taking the Mirapex, but at a reduced level. But she said to go ahead and keep increasing the dose if it didn't help immediately. I'm very hesitant to add a medication to the meds I'm already taking but I do really want to improve my sleep apnea. I took it last night and it made me very tired but I still woke up and I just threw off my mask. This morning I'm very nauseous. Not inclined to take it again.

[kteague]

As much as possible, try to keep your OSA and limb movements (if you indeed have them) separate. It's easy to think that CPAP treatment isn't working when daytime symptoms are really due to poor sleep from limb movements. Optimize your OSA treatment based on machine data, make treatment as comfortable as one can, then proceed with consistent use of the treatment regardless of how you feel. Just based on my personal experience, I had to remove my mask to catch my breath due to too low of pressure rather than too high, but everyone's situation is different. When my limb movements were bad I had heightened sensitivity to touch and the mask would feel maddening and felt like if I didn't snatch it off I'd go crazy. In those times I had to take it off, get up for a few minutes, then do a restart. Had to make a conscious effort to not assume my CPAP was to blame for every problem.

[zonker]

As much as possible, try to keep your OSA and limb movements (if you indeed have them) separate. It's easy to think that CPAP treatment isn't working when daytime symptoms are really due to poor sleep from limb movements.

thanks for posting this. this is true in so many other areas of sleep apnea. i know that when i started, i thought it was just "fix it and forget it". it wasn't until i got my ahi down that i started to look at other factors in my sleep.

in my case, not limb movement, but frequent wake ups. so i'm tackling those now and having good success.

[KTinTexas]

As much as possible, try to keep your OSA and limb movements (if you indeed have them) separate. It's easy to think that CPAP treatment isn't working when daytime symptoms are really due to poor sleep from limb movements.

thanks for posting this. this is true in so many other areas of sleep apnea. i know that when i started, i thought it was just "fix it and forget it". it wasn't until i got my ahi down that i started to look at other factors in my sleep.

in my case, not limb movement, but frequent wake ups. so i'm tackling those now and having good success.

How are you tackling your frequent wake ups?

[zonker]

As much as possible, try to keep your OSA and limb movements (if you indeed have them) separate. It's easy to think that CPAP treatment isn't working when daytime symptoms are really due to poor sleep from limb movements.

thanks for posting this. this is true in so many other areas of sleep apnea. i know that when i started, i thought it was just "fix it and forget it". it wasn't until i got my ahi down that i started to look at other factors in my sleep.

in my case, not limb movement, but frequent wake ups. so i'm tackling those now and having good success.

How are you tackling your frequent wake ups?

sleep hygiene. if you google it, you'll see a long list of things to change in one's life. the things that stood out for me was cutting back alcohol, caffeine and rich foods. my nemesis was red wine, which i drank far too much of. i now consume half of what i once drank. i do not drink coffee after 12 noon. i'm still trying to cut back on the rich foods which still hold sway over me.

i also have upped my exercise a bit. when i was still working, i spent my life doing warehouse work. it was enough to keep my weight off. but once i retired, i sort stopped doing much of anything.

now, over the last few months, i'm trying to get more physical activity in my daily routine. nothing major. i don't run miles or lift weights or like that. just keep myself doing more like walking and riding my spin bike. chair yoga works for me. and water aerobics. stuff like that.

again, i'm not on some regiment where i do things on the hour and by the book. and sometimes? that extra glass of wine disappears. or i'll have that cup of coffee at 1:30. it's just that i know i'll pay the price for it later.

i also take melatonin in liquid form in a very small dose.

all of this i find works for me. but i have no idea if it will work for thee.

all i can say is google it up and have a look for yourself.

good luck.

[Dog Slobber]

my nemesis was red wine, which i drank far too much of.

But can one really drink too much red wine?

[zonker]

my nemesis was red wine, which i drank far too much of.

But can one really drink too much red wine?

in my case, yes apparently. correlation? causation? how do these things work?

since cutting my red wine consumption in half, i now longer wake up at 3:30 am, fully alert.

i can now sleep some days for seven hours before waking up.

to me, this is massive progress.

ETA: this of course isn't the only change i've made as i stated above. but i'm sticking with the plan in total.

[BamaGramma]

I was diagnosed with RLS almost 20 years ago and put on Klonopin. Then a year or so later because I was having frequent break-through, the doctor added Mirapex. Three years ago i had to change PCPs and she immediately told me to wean off the Klonopin and suggested I add Melatonin. It took six weeks to wean off and even then I had two weeks of withdrawal after the last dose. My legs are pretty stable at night with break-through maybe 1 or 2 times a month.

At my consultation with the sleep doctor back in April he told me to stop taking Melatonin because it aggravates RLS. Also said to stop any anti-histamines and reflux meds for the same reason. As a help he suggested a vibrating foot massager. For whatever reason that is supposed to help the "creepy crawly" feeling in the legs. I just found one at Aldi and haven't had a break-through so I don't know how effective it is. Just for general relaxation it's great.