Another Study After a Year!!

birdshell · Post by **birdshell** » Wed Sep 05, 2007 5:39 pm

I am so thankful for the people on the forum. Recently, some techs were on our live chat and I got to know them. Several suggested that I needed another sleep study, called a CPAP study since I was already a "user".

It so happened that one of the techs lives in my town. We started chatting and the short story is that I went to her sleep lab. I had a good evening being hooked to wires and trying to sleep well.

The results? They were more detailed, and I loved that. My pressure was raised from 9 cm to 13 cm.

I also was found to have PLMD (Periodic Limb Movement Disorder) which was not caught at my first sleep study or titration. This is most probably because the breathing problems (SDB, or Sleep Disordered Breathing) were masking the leg movement problems at that time. Now that I have had treatment for a while, my breathing problems have abated when using CPAP. Because I am not snoring as much, if at all, my throat tissues are not as irritated. Therefore, this study showed the leg movement partially rousing me periodically.

I took my first dose of Mirapex last night. BOY! DID I SLEEP HARD!! It was great, and I can only say that had the techs not come to our chat, I might still be limping along on a pressure of 9cm and dancing at night!

So, the point of all this is: consider a study after a year. It just might make the difference between some OK treatment and some much better treatment.

Goofproof · Post by **Goofproof** » Wed Sep 05, 2007 6:22 pm

That is why I recommend full XPAPs, APAPs with software. It would have not been necessary for you to have your treatment incorrect for so long. You could have been in charge every nite, but it was more important that the profit level of your provider be higher, that the quality of your treatment. Jim

kteague · Post by **kteague** » Wed Sep 05, 2007 8:09 pm

Yay! Glad you're able to take this to the next level and get your pressure optimized. The Mirapex can be a lifesaver when one is desperate for the limb movements to be controlled and allow some sleep. Just be alert for possible side effects down the line.

Hope your sleep just keeps getting better and better.

Kathy

rested gal · Post by **rested gal** » Wed Sep 05, 2007 9:10 pm

WTG, birdshell. Wasn't it nice to "know a tech" and be more than just a number.

Not that they don't do a great job for every cpap user or user-to-be that comes through. But it's still nice to have someone involved who knows ya.

Bert_Mathews · Post by **Bert_Mathews** » Thu Sep 06, 2007 6:48 am

birdshell wrote: I also was found to have PLMD (Periodic Limb Movement Disorder) which was not caught at my first sleep study or titration. This is most probably because the breathing problems (SDB, or Sleep Disordered Breathing) were masking the leg movement problems at that time. Now that I have had treatment for a while, my breathing problems have abated when using CPAP. Because I am not snoring as much, if at all, my throat tissues are not as irritated. Therefore, this study showed the leg movement partially rousing me periodically.

I took my first dose of Mirapex last night. BOY! DID I SLEEP HARD!! It was great, and I can only say that had the techs not come to our chat, I might still be limping along on a pressure of 9cm and dancing at night!

So, the point of all this is: consider a study after a year. It just might make the difference between some OK treatment and some much better treatment.

Now I don't know about this SOLUTION for RLS / PLMD "Might just be a fun read?

http://www.peoplespharmacy.org/archives ... cramps.asp
Anybody want to comment???

Bert

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP

birdshell · Post by **birdshell** » Thu Sep 06, 2007 6:58 am

Jim--Goofproof, I hear what you are saying about being in charge of one's own treatment. You are certainly aware of the ins and outs of medicine in our modern society--more than most of us.

But, since I am paying for my own (generally outstanding) medical insurance it is a little tough to buck the insurance requirements. I am looking for a data-capable machine (which may be affordable now with cpapauction).

However, I am thinking that I still would have needed a study to dx the PLMD. That wasn't evident until my sleep disordered breathing was controlled for a while. Even if I had identified some type of problem, I would have been required to have a study in order to justify the rx for Mirapex.

So, Laura--rested gal--You are so right! Having a friend in the sleep tech business is very comforting. While I went to a respected lab and had the same well-respected tech for both my first sleep study and the titration, the report to my doctor was not as complete as the second. The first lab is affiliated with a city hospital and they are just WAY too busy.

And, Kathy--kteague--if anyone would know about Mirapex it would be you! I have a fairly low dose right now, so I'm looking out for the side effects but hoping the small amount might do the job without them.

And, Bert--I had forgotten all about the Ivory soap solution! I never thought I HAD PLMD back then....I wonder what the extra time has brought for those who were trying it? It did seem to be a help to some at least for a while...

Thank you, as always, for your support. This is the best forum, IMHO, because of Forum Folk like you all!

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration

Catnapper · Post by **Catnapper** » Thu Sep 06, 2007 7:54 am

Good for you birdshell!

Sorry to hear you have PLMD, but at least you now know what is happening. I remember hearing that you like to dance!

Good luck with the new medicine and higher pressure. I hope it helps a lot.

Sweet dreams.

Catnapper

debst99 · Post by **debst99** » Thu Sep 06, 2007 8:43 am

Don't know if the following is PLMD or not? After my husband just goes to sleep, his legs jerk every 15-30 seconds. After he is asleep for awhile, it doesn't seem to do this. Would this be the same thing? We have never thought that he had a sleep problem.

dieselgal · Post by **dieselgal** » Thu Sep 06, 2007 11:21 am

Birdshell,
During my sleep study they did find that I have plmd and that was causing me more problems than the apnea.

One thing I wanted to mention is that if you have the correct pressure now you might not need the mirapex.

Since I have started CPAP my PLMD has virtually disappeared (Thank God)
but try the new pressure without the meds first. Wouldn't it be great if you ended up not needing meds?

LavenderMist · Post by **LavenderMist** » Thu Sep 06, 2007 11:42 am

debst99

Hope this answers your question...
--------------------

Periodic limb movement disorder (PLMD) is repetitive cramping or jerking of the legs during sleep. It is the only movement disorder that occurs only during sleep, and it is sometimes called periodic leg (or limb) movements during sleep. "Periodic" refers to the fact that the movements are repetitive and rhythmic, occurring about every 20-40 seconds. PLMD is also considered a sleep disorder, because the movements often disrupt sleep and lead to daytime sleepiness.

PLMD may occur with other sleep disorders. It is often linked with restless legs syndrome, but they are not the same thing. Restless legs syndrome is a condition involving strange sensations in the legs (and sometimes arms) while awake and an irresistible urge to move the limbs to relieve the sensations. At least 80% of people with restless legs syndrome have PLMD, but the reverse is not true.
------------------------------

I have been diagnosed with OSA, RLS, and PLMD

Slinky · Post by **Slinky** » Thu Sep 06, 2007 12:09 pm

I always have trouble keeping PLM and RLS straight in my beady little brain.

Hubby has the PLM. Rhythmic movements of his legs and feet thru out the night.

I have RLS. It does sometimes happen at night. I've had it wake me up once or twice. And I've had it happen early in the day or mid-day as well but USUALLY they occur in the evening.

I've had the EMG w/NCS and the doppler ultrasounds because I also have been woke up at night w/my lower legs, knees on down, ankles and feet, ACHING so bad they were what woke me. No edema. But there are times that its like I have a pair of knee high boots on that are too tight and the legs and feet just tingle and burn - or ache. Nothing is showing up via the tests. Altho I didn't have a whole lot of confidence in the EMG w/NCS because my feet got so COLD, the neuro or tech who did the study said it was only a one or two degree temperature difference so it wouldn't affect the study, they could make allowances for it. But if my feet were only 1 or 2 degrees colder than my inner core temperature I must have had a body temp of 94 or lower 'cause my feet were so COLD!!!!

birdshell · Post by **birdshell** » Thu Sep 06, 2007 1:26 pm

dieselgal wrote:Birdshell,
During my sleep study they did find that I have plmd and that was causing me more problems than the apnea.

One thing I wanted to mention is that if you have the correct pressure now you might not need the mirapex.

Since I have started CPAP my PLMD has virtually disappeared (Thank God)
but try the new pressure without the meds first. Wouldn't it be great if you ended up not needing meds?

Yes, it would be great...but I have already slept at the higher pressure for nearly a month with an improvement in my sleep that is not optimal. So, I went for a one month trial of the Mirapex.

I think the fact that my first night was such a "hard" or deep sleep indicates that there is some need for the medication. I used to sleep that way as a younger person on occasion; but that hasn't happened for years and years, left to my own devices.

Thank you for the information, though. My dx says "moderately severe" PLMD, which probably means I am stuck with the meds. It is always a trade off, though--and I would absolutely love to reduce my medication. At this point, however, it just isn't worth the reduction in results, too.

dieselgal · Post by **dieselgal** » Thu Sep 06, 2007 2:55 pm

I didn't realize you had already been trying the higher pressure for that long. I am thankful every night that apparently the CPAP helped my PLMD so much. Mine may not be as bad as yours or I just may be lucky
I know that in 3 1/2 hours I had 86 events of leg movements with 11 arousals caused by that. With a total of 23 arousals and sleep efficiency of 79.9
I DO BETTER THAN THAT NOW FOR SURE!

birdshell · Post by **birdshell** » Fri Sep 07, 2007 12:47 pm

NP, dieselgal. How could you know? I took my time getting around to posting my experience.

I had no idea it had been quite so long, either. If my machine hadn't told me that I'd slept at the higher pressure for 28 days, I wouldn't have known.

My guess would have been only a couple of weeks. Hey, we NEED these record-keeping devices!

Thanks again to all for the support and suggestions. Sorry, but I have yet to try the Ivory soap solution--only fragrance-free Dove is in my cupboard until I can remember to buy Ivory at the store.

Another Study After a Year!!

Another Study After a Year!!

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