OT: PLMD and Mirapex

[BrianinTN]

I've had three sleep studies over the past year. I'm headed in for a fourth this coming Thursday, which is officially an ASV titration. I recently found out that in my first study almost a year ago, there was a positive diagnosis for "moderate PLMD." Even in my latest study (a BiPAP titration), I had a PLM index of 27.7 during my final three hours of otherwise-stable sleep.

At my last appointment a week ago, my doctor gave me some Mirapex ER samples, and I still have some of those left. I know that PLMD in and of itself may or may not be disruptive to sleep and therefore may or may not be a problem. I'd like this upcoming sleep study to be as productive as possible, though. To that end, I have a couple questions for the more knowledgeable PLMD folks around here:

1) Is there anything in particular that you would ask either of my doctor ahead of time, or of the sleep technician at the time, to be sure that the PLMD side is being looked at appropriately?
2) The one page summary from my last sleep study gave me no indication of which arousals were due to PLM. Other posts I've read indicate that this should be obvious. Is the issue simply that I don't have the complete report? If so, what would be the technical term for what I'm looking at here?
3) Is there any reason you all can think of for me to discuss *not* taking the Mirapex for the sleep study? (e.g., proper ASV titration might show the condition to be self-improved so much that it would reduce the need for the medication)
4) Any other thoughts or advice?

My heart goes out to those of you who I've seen talking about your trials and tribulations with PLMD. I'm hoping your collective wisdom might help me maximize this chance to learn more that I have coming up.

[SleepingUgly]

1) Is there anything in particular that you would ask either of my doctor ahead of time, or of the sleep technician at the time, to be sure that the PLMD side is being looked at appropriately?

I would want to know whether they are truly seeing PLMS or if they are seeing muscle contractions in association with respiratory effort. But I'm not sure how you could ask that because if they were aware they were misdiagnosing, they wouldn't do it!

2) The one page summary from my last sleep study gave me no indication of which arousals were due to PLM. Other posts I've read indicate that this should be obvious. Is the issue simply that I don't have the complete report? If so, what would be the technical term for what I'm looking at here?

There would be an index for PLMS with arousals that is separate from the overall number of PLMS per hour index.

3) Is there any reason you all can think of for me to discuss *not* taking the Mirapex for the sleep study? (e.g., proper ASV titration might show the condition to be self-improved so much that it would reduce the need for the medication)

Yes, the reason you gave. I did my last sleep study on 1200mg of Neurontin. They told me that all my leg movements were not true PLMS, but were muscle contractions associated with respiratory efforts that disappeared when I got to 8cm or 10cm or something like that. The nagging question in my mind, however, is how do we know whether I have any TRUE PLMS that were treated by Neurontin, but would reappear if I got off Neurontin?

4) Any other thoughts or advice?

Yes, send a PM to kteague and get her input. She knows a lot about this subject.

[rested gal]

4) Any other thoughts or advice?

Yes, send a PM to kteague and get her input. She knows a lot about this subject.

Very good idea!

3) Is there any reason you all can think of for me to discuss *not* taking the Mirapex for the sleep study? (e.g., proper ASV titration might show the condition to be self-improved so much that it would reduce the need for the medication)

Yes, the reason you gave.

Exactly.

Actually (another "what I'd do if it were me) regardless of the answer I think I'd still go off the Mirapex now...giving it time to get out of my system in case it needs time to begone. Titration with an ASV machine is going to be completely different from regular cpap/bilevel titrations, and completely different even from the titration you had with bilevel S/T. I'd want the ASV titration to have as clear a look as possible at whether I truly had "PLMD" (Periodic Limb Movement Disorder) while using a much more appropriate treatment for central apneas...an ASV machine... than the other machines that had been used in my previous titrations. If PLMD doesn't appear in the ASV titration without Mirapex, so much the better. If PLMs do happen without Mirapex, you and the doctor can later discuss whether the PLMs in and of themselves caused enough arousals/sleep stage disruptions to warrant going back on it.

Given the very different way an ASV machine goes about its work dealing with centrals and does it so quickly, even if you do also have the separate sleep disorder called PLMD to a sleep disrupting degree, I believe they'll be able to get a very good titration for effective ASV settings -- even with PLMs present. That's just my guess, though, and I'm sure not a doctor.

[kteague]

Hi. Just happened to stop in and saw this thread. My computer is down so I can just check in as opportunity arises. Am at the hospital with a friend, stopped in the cafeteria, and saw computers in the back of the room.

I'm not much help on this issue as I've not had any special titrations, just basic CPAP. And without specifics on those movements, it's anybody's guess. The details of the report should give details on the movements, and since you don't really have a full picture of your movements, I guess this will give you a better idea whether your movements are resolved during the titration or not. The meds for PLMD are no joke, and I certainly wouldn't want to be on them if it wasn't certain I needed them. If your report said they were resolved with CPAP, why are you being given meds? ARGH!!!! Personally, I wouldn't take any meds unless they could demonstrate to me in no uncertain terms why my movements merited meds.

My personal experience is that true PLMD can interfere with a titration IF the movements disrupt sleep. Not everyone's does. If your limb movements have been appropriately diagnosed as meriting treatment, I'd say to treat them to not confuse the titration. But unless your doctors can produce documentation from prior studies revealing more, maybe this sleep study can be considered like starting fresh. When I changed doctors they wanted to do that just so they could be sure what was going on. When you get these results, be a detail hound. Get copies and ask questions. If you need to, bring the results here for suggestions on what questions to ask.

Wish the answers were clear cut. Would hate for the movements to interfere with the titration, but also would hate for you to be on toxic meds without evidence they are needed. Best wishes as you work through this.
Kathy

[jeja]

Should examine restless leg syndrome as periodic limb movement is associated with it. CPAP won't really help. I am on some pretty strong meds for restless leg/plmd. Still get the odd night when the legs are "running a marathon" I basicall destroy the bed.

[BrianinTN]

Hi all! Thanks for weighing in -- and kteague, thanks for beating me to the punch. I'd probably read more of your accounts on here than anyone else's, so it was great to have your input.

I have to admit that up to this point I'm pretty confused about what role, if any, the PLMD side is playing in my sleep. Like I mentioned, the subject only came up in my most recent appointment, despite the diagnosis 10 months ago. He gave me the Mirapex ER more as a "let's see if this helps the fact that you're on BiPAP but still really exhausted during the day"; I did *not* get the impression that it was based on anything more than looking at the last column in:


I've taken a few of the Mirapex, but I honestly can't tell whether it makes a difference or not. And maybe that's related to the fact that I'm still on the wrong machine for breathing support, so even if the PLMD were a big problem, fixing it would be tantamount to fixing a flat tire on a car while your transmission's still busted. What y'all said makes sense; I'll let this be just an ASV titration and worry about the PLMD possibilities later.

One follow-up here: at least according to my girlfriend, my leg movements are barely noticeable. This suggests to me that setting up a webcam some time down the road might not tell me whether the Mirapex was making a difference. Assuming I get set up properly on an ASV but still face daytime sleepiness, would there be any way other than yet another PSG study to find out whether the Mirapex gets the PLMD under control? I know it's supposed to be highly effective, but I've certainly learned I have a body chemistry that doesn't respond as well as most people to lots of drugs.

Thank you all again!

[kteague]

My personal perspective based on years of having OSA, RLS & PLMD is that getting the apnea treatment optimized is priority. While both can cause fragmented sleep, apnea carries with it so many more adverse effects than fragmented sleep alone. If you really do have PLMD, it will probably show up on the new titration study. I wish some of our tech type members could tell me if their sleep study experience bears this out. When one has frequent arousals from apnea, PLMD movements may not get a chance to manifest due to not sleeping uninterrupted much. During your titration, as it reaches an effective pressure for the breathing issues, it makes sense to me that those with untreated PLMD will likely see an increase in limb movements once sleep is better. That's a bridge you can cross if it turns out you need to. We have some sleep professionals on here who understand all this more than on an experiential level. If your new results suggest a need to address limb movements, their input would be helpful. Please keep us posted.
Kathy

[BrianinTN]

I'll add here, in case it's relevant, than in my last sleep study (a BiPAP S/T study), they had my apnea under control. Well, sorta. The last three hours at my final pressure (20/16) showed no official centrals or obstructive apneas, and just a handful of hypopneas (to keep my AHI in the mid 3s). This is why they sent me home with that device -- they thought that all was well and done. That was even in the presence of the PLM index numbers I gave in my first post for those three hours, though. The reason I'm headed back in is that (a) at the prescribed pressures, my home machine was showing lots of centrals, and (b) even tinkering with the pressures on my home machine to get a lower AHI, I still feel lousy the next day.

[BrianinTN]

Howdy folks. I'm back to lean on you for advice. Short version: The ASV titration went well and seemed to solve my apnea problems, and I woke up feeling pretty refreshed. However, PLMs were still an issue and caused arousals (although I can't tell exactly how many from the report). Long version: If you want to see the report, you can in my other thread here: viewtopic.php?f=1&t=61719&p=587658#p587658

So my my big question is -- once I get the ASV at home, what would you all do if you were me? Would you adopt a "wait and see" approach, in the hopes that the ASV might eventually resolve the PLMs in the long-term, or that the PLMs prove not to be a problem? Or would you go ahead and get an Rx for the generic Mirapex (which I guess aren't extended release capsules)? Or something else entirely? Thanks for the input!

[SleepingUgly]

I shouldn't be giving an opinion here at all, but if you want my ignorant, uninformed, worth less than nothing opinion... I would NOT go on dopaminergics unless I had to. That said, I was on Mirapex at one point in my life before I knew anything about them, for a few months, and they did nothing but caused me no harm either (it just didn't help my EDS, probably because SDB was my problem). Is there any harm to trying the ASV first? What if you have PLMS that you're asymptomatic for and all your symptoms are from the SDB? Then you might not need to treat them. But what did your doctor say?

[BrianinTN]

Well, the doc really didn't say much at all about it. The PLM only come up as a side conversation actually. He gave me the samples of the Mirapex and told me to try them and see if they help. I don't suppose there is any harm in trying the ASV by itself first, other than generally wanting to move on with my life. I feel like I've largely wasted most of the last year because I've been exhausted, and while I'm lucky in that I've been able to take time off and not work in that time, it's not something I can do permanently. I'm shooting on going back to school this fall, so if I get the ASV next month, I guess that does give me time to start taking the Mirapex in June if I'm still not feeling better.

[BrianinTN]

Hi -- for those of you who have taken Mirapex and who chimed in already, could you comment on what the negative side effects were in your cases? I've done the usual Googling and seen the list of known effects, but I'd love to hear about the experiences of others taking it for PLMD on top of apnea. Thanks!

[kteague]

Since you asked... I had a few months of Mirapex helping my limb movements, and then it was worth the dangerous sleep attacks and feeling generally miserable, but I had so much going on I honestly can't say Mirapex gets all the blame for me feeling miserable. Once it was no longer effective and high doses began to cause more trouble than it fixed, I had a few YEARS of hellish existence before I realized the Mirapex was a major issue. Have you seen my video, made possible courtesy of Mirapex? And then there was the compulsive/addictive behavior, along with some other lesser problems. All that said, I still feel that sleep is so necessary to life that sometimes we just do what we've gotta do - it's survival.

As to your situation, I agree with others that I'd want to KNOW I needed the med before I took it or any of the other meds commonly prescribed for limb movements. (I've also taken Sinemet, Neurontin, & Requip.) If it turns out a med is required for you to get restful sleep, so be it. But with degree of success I've been having for 6 months now with using a TENS Unit, I wish this was the preferred and first prescribed treatment for everyone to try. I can't tell you how different my body feels now. Can't say for certain how much is due to getting off the med vs getting better sleep.

Best wishes figuring out your plan of action. Sorry if I'm coming off a bit strong, I'm still smarting over having lost so much of my life and health due to this issue. If you do decide to take the med, I can only advise staying at the lowest effective dose, and if you see it's not working, don't do like me and continue on and on. Let us know how things go.

[SleepingUgly]

Yeah, I'm a little surprised how easily doctors pass out dopaminergics just to try... Is augmentation such a rare issue that it's not a big concern of theirs? Kathy, glad you're doing so well on the TENS!!!

[kteague]

Sleeping Ugly, I think it's as with most meds, there is a lack of appropriate respect for the prospect of side effects. And with these meds, everyone just thinks the disorder is progressing when it's really augmentation. I'm guessing I'm not a rarity in that not even the medical professionals figure it out easily. I figured it out accidentally, by running out of the med while out of town.