periodic leg movement

[kevrx]

Hello all,

I have been diagnosed with plmd as well with a lot of leg movements and awakenings that showed up more on my titration than my sleep study.  I am trying tyrosine and clonazepam hoping to ween off the clonazepam or possibly try mirapex in the future.  I am including a graph that shows what many of my events look like.  Is this what you all see as possible plmd showing up as a gasp?

   

[sheepless]

here's an example of what mine look like.  after starting ropinirole, I think I'm seeing another 'softer' pattern as well; one that looks like the waning/waxing of csr.

[kevrx]

So it happens over a period of time not just a singular event?  Maybe what I am seeing in my chart is just rolling over.

Kevin

[Gideon]

I saw arousal, unknown reason, with a sharp deep inhale and deep exhale with the breath-holding for about 25 seconds followed by a CO2 driven waxing and waning CSR like (it is not CSR) pattern then evening out.

[sheepless]

I'm sure bonjour's interpretation is more sophisticated than mine; I just see a nearly 30 second ca.

kevin, plm is periodic or repetitive, with nearly uniform time and breaths between movements. I'm sure it can be just a single event, but if so, I wouldn't recognize it. sometimes it's only a few instances in an episode but I have to see at least 2 of the sharp inhales to know it's not just a sigh, for example. I've seen the pattern I posted above in other people's flow rate but idk if plm presents that way for everyone. start by looking for anything you think looks like periodic breathing. look for relatively flow limited breaths between sharper inhales. many of mine have what look like snores but are actually moans/groans close to the spike. sometimes there are apnea events and leaks in the midst of the repetitive pattern. often, like the one I posted above, plm wakes me and ends a sleep session. other times I sleep right through them. I've never been aware of them. for me, an episode may be just a few movements but more often they last ~ 20-60 minutes, usually ~ 10 - 30 seconds apart. I have them mostly but not exclusively soon after going to bed and during the first couple hours of the night.

[Shulamet]

Thank you Sheepless....that was validating and eye opening! My EDS is getting worse and debilitating....takes me longer to process info..... I am still intimidated by Oscar but am getting there.... much of this is not intuitive without a computer science or engineering background. I value those that have created this  for us mere mortals. I also feel less of a failure for the journey having no road maps. I really am frustrated how hard this is. I have worked on complex grey issues my whole career. But Sleep Disorders are by far the most challenging.

I wanted to laugh when the Neurologist started talking about  Wakix for EDS....not on any Medicare Formulary and no discounts, its $6000..... Sunosi is only $600 (a new SNDRI Dopamine emphasis the Pulmonologists are keen on).

My research also indicated ropinirole or pramipexole are options as well as off label levadopa carbidpa.
Another study used Modafinil and Flecainide....others low sodium oxybate....

My iron, ferriten and metabolic panels were fine. I do take 10,000 mcg B12 with the Adderall  and go back to bed until I can climb out. The Amphetamine Salts really dont work anymore and I do not want to increase the dose above 20mg.

I take Magnesium and Zinc (with Calcium). Noorotropics seem to include St Johns, Oregano extract, Ginko biloba, Ketamine and MDMA had a Med Marijuana card and the Dispensarys in Florida are just for profit not health. They could not answer basic terpene questions.  If you found a good CBD to THC ratio for daytime let me know. I just want the energy.  But if you found one for sleep that reduces the PLM I'd try it.  I even tried Kratom, no effect.

Of course the MDs are not interested in my thoughts or questions so I am trying to narrow them down.

I am now motivated to black out the Titration scan and attach.... It is amazing that so many are curious to review this data and help.
Thanks

[sheepless]

Shulamet, there are a lot good, kind and helpful folks here; really an exceptional resource, filling a niche in which the sleep med industry has failed.

there's a lot to learn and sometimes it seems like the more I learn the less I know, but in a month or two you'll have a pretty good idea what your oscar charts and the data produced by your machine mean. meanwhile, ask questions and folks here will give you the benefit of their experiences and knowledge.

you said:

"If you found a good CBD to THC ratio for daytime let me know. I just want the energy. But if you found one for sleep that reduces the PLM I'd try it."

I have not found or even looked for anything for daytime use. I couldn't manage being very functional while stoned so I limit use to before bedtime. there are probably dozens of strains of cannabis that will help with sleep and probably dozens more that won't. trial and error. in my case I've found that I wake less frequently with a high thc indica or hybrid RSO (concentrated oil, comes in a syringe without needle, tastes bad). 1 or 2 brands seem to have the opposite effect, but most of them help me sleep longer between awakenings. you have to find the best dosage; too little doesn't do it; too much gives me a pot hangover the next day. not sick like an alcohol hangover, but too much leaves me sluggish nonetheless.

I attribute my gradually lengthening sleep sessions and slowly feeling better to moving from apap & asv to vauto and taking ropinirole and RSO. idk if nightly cannabis use is any better or worse for me than the bunch of meds I've been prescribed for bp, cholesterol and plm but it's been at least a year or so and knock on wood no obvious ill effects so far. overall I'm in much better condition than a year ago.

for comparison to your adderall dosage, I was taking 60mg generic adderall and 200mg modafinil daily before I got my first machine (apap) and quit those meds. I could not have functioned as long as I did without the stimulants before finally getting some apnea help. still, toward the end, even all that stimulant wasn't enough to allow me to be functional, and besides, they had to be counter productive to the goal of better sleep. I experienced withdrawal from adderall in the form of a few weeks of crushing exhaustion without sleeping any better. now, between apnea and plm treatment I'm less sleepy but still have ADD. I prefer the adderall for that but the doc is only allowing me 200mg modafinil for now. it's better than nothing and has fewer side effects. doc's more worried about adderall giving me a heart attack than I am. I just want to be functional again.

[kevrx]

Sheepless,  have you heard of biot's breathing?  I noticed that the chart you showed me looks similar.

Kevin

[sheepless]

nope, but I'll look it up today.

[sheepless]

kevrx, thanks for the heads up.

a quick search and a look at a few hits lead me to think biot's is one of several to many forms of periodic breathing and that I'm not likely to be suffering from this one as I don't have any of the few conditions associated with it (like intracranial pressure, meningitis, stroke). also, it appears to be associated with apnea events which I only occasionally get with plm and that's mostly been with certain less than desirable pressure settings.

while I'm not sure which pattern I showed you, I have confirmed to my satisfaction that my box-like pattern (inhale spike, several more flow limited breaths, inhale spike) is my respiratory response to plm. confirmed with audio recordings and my wife's reports.

after taking ropinirole for plm, I suspect that a 'softer' more rounded sinusoidal pattern has emerged but I haven't confirmed it yet. it's uniformly repetitious enough, with each movement having a clear beginning (sharp inhale) followed by a reduction in flow for a few breaths, to imply similarity to my pattern known to be associated with plm. happy to show more examples if anyone is interested.