Searching for successful treatment of PLMD

[Sleepcycle]

Hi all

I'm searching for successful stories of treatment of PLMD in connection with sleep apnea, what ended up working for you. My 18 month CPAP journey has been mixed so far and i'm still searching for answers to optimize my sleep.

From an AHI of 38/hr on my original sleep study my last two sleep study results over the last 6 months have been an AHI of 5/hr and then increase to 10/hr. I find this interesting as my resmed 10 machine always says AHI of under 2/hr each night but actual sleep studies show a higher AHI. I have a home sleep study every 6 months and will continue to do so until I figure this out. I guess the machines are just an algorithm and have limited feedback/collection points. Its interesting as it makes me wonder how many people believe the AHI the machine tells them when its not accurate. My sleep Dr is good and we are working on a number of things, we have been dialing in CPAP settings and I'm also taking gabapentin and playing with dose to try and find the sweet spot. I have no side effects from Gabapentin so I'm not seeking feedback around possible side effects. 

In my last two sleep studies my PLM have been high and there is always a spike in HR when these occur which means waking up, my waking from PLM is more than the apneas so this is what I'm seeking lived experiences around. I don't have RLS while awake like a lot of other people seem to from the threads I've read. I think im just a restless sleeper and have been for a long time.

I know there is a 'periodic limb movement' thread by sheepless but you need to read through a lot of content and it does go off in quite a few directions. I'm looking for this to be more direct around what worked for you and keep to that.

thanks in advance to those to read and contribute

[kevrx]

I have found some relief with 500 mg to 1000 mg of l-tyrosine. It definitely helps when I have rls symptoms. It can help increase dopamine.

[sttebr]

Thanks for starting this post.

Although I don't have any solutions that I have found yet, I share your interest in PLMD as it sounds like our stories are quite similar. 

I had an overnight, in lab sleep study a few months ago which showed I had mild apnea, but severe PLMD. I only slept a little over 4 hours during the study, but had over 500 limb movements recorded in that time with 97 causing arousals. I am now on CPAP which has controlled my apnea with most nights AHI being in the 2-3 range, but like you I wonder how accurate that really is as I clearly see disturbed sleep that is not marked by the machine as well as events flagged that look more likely caused by an arousal / awakening. The only evidence that I have that CPAP is helping is that my O2 desaturation is much improved with most nights staying well above 90 and averaging 95-96 for the period, but I still wake up tired which I believe is related to all the PLMD arousals. Like you, I don't suffer from RLS during the day.

My primary care doctor suggested I start taking Mirapex, but I declined so far as I was hoping that perhaps PAP therapy would help with the PLMD over time. I am taking 400mg of reacted magnesium in the evening, have reduced caffeine to only coffee in the morning, exercise daily but only early in the day, and try to keep a regular sleep routine. While I'm pretty sure none of this aggravates PLMD, I can't really say any of it has helped much either.

From my pulse/ox device which also measures movement from the ring attached to a finger, and the small night vision camera that I have placed in my bedroom, I clearly am still jumping and jerking much of the night. Most nights it starts soon after I fall asleep and is very rhythmic every 15-30 seconds for an hour or so. After that, it becomes more periodic through out the rest of the night with shorter bursts of movement followed by calmer periods. I notice also like you, that my pulse and also my flow rate chart indicate similar spikes that correspond to the observed movement.

Most of my reluctance to starting drug therapy so far has come from the many stories I have read about the side effects and augmentation...glad you haven't had a problem with that. Is the Gabapentin helping the PLMD?