Why RLS and PLMs Get Worse With Treatment

Hi Muffy

I used to decipher Congressional Compliance Law for our Govt. Agency. Translating Cong. prattle is difficult, but trying to understand medical jargon is like entering a different universe, & wondering what the hell is goin' on. However, I got some great help with the questions I want to ask both the Sleep Dr. & the Gastro. Dr.

The "RLS Foundation" had an affirmative evaluation of Lyrica & Mirapex. I learned .75 mg. is the maximum recommended dose. I had a "whoopee" moment when I read some study partipiciants had their symptoms reduced with various iron treatments. I am encouraged that the possibility that raising my Ferritin levels will be helpful to me.

I read that Folic Acid and exercise can be beneficial. I do exercise, usually 2-3 X per week. 1/2 hr on both treadmill and recumbent bike. If I do much more, I get a flare of my spinal stenosis.

In the Augmentation document, they quoted the 1996 study reporting that about 80% of people with RLS developed augmentation. In your experience, have you found it is that high? I appreciate all the information on RLS and PLMS. I have copied it into a PDF file. I've got to check if it transferred. Muffy, after all the references to neurologists in the articles I read, I am going to ask my pcp if I should see one.

Muffy, I hope you are still with me, sorry about the long winded post. I wonder if you have any information about my problem.

Muffy wrote:I think one has to be absolutely clear on this point, but arguably, if CPAP creates more problems that it solves, then you really have to consider a different question.

I started using Cpap in January, '09. Sometime in February I began having an irresistible desire to eat, and eat. I'm eating things I normally never eat, I feel full, but the urge to keep eating is so powerful, I haven't been able to resist it. I hadn't increased, decreased or added any drugs. The only change in my life was Cpap, Oh, & I totally revamped my sleeping style and habits, I consider that change,to be one of the best things I have ever done for myself. DH is amazed that I am ready for bed before him. The Sleep Hygiene info. came at the right time for me. Thanks

I have gained 32 pounds, & I can't stop craving food.

My weight has been stable for years, no more than a pound or two - one way or the other. I slowly started to gain weight 'bout late May, since then it has been an constant increase. In my June sleep study the Dr. made the statement that I was not obese. I talked to the Sleep Dr., he said It was not connected to cpap. I have seen my pcp twice, he does have a clue. I am frustrated that I can't control this urge.

I found a statement a Sleep Dr. at the U of Utah Sleep Medicine Dept made.that may apply to me. "Sleep deprivation affects those hormones, causing an increase in ghrelin. So, the gas is on and then the Lepton is low. Thats the brake, and the brake is off and you eat more. He said when he was in medical school he was sleeping less and weighed 215 pounds. Later with regular and full sleep, he dropped to 170 pounds." He may be the low man on the totem poll because of his age. The principal Dr. is AMSA accredited & has published articles re: RLS.

I don't know if I am sleep deprived, or have non-restorative sleep . I am just looking for an answer. In your store of medical articles do you have anything on this? Many thanks for all the information you have already sent.

Jan

Jan, just a few "me too" items... I went thru an extended period of eating like there was no tomorrow. Happened to also be on Mirapex at that time. Also, in following a reference to your prior thread about your struggles, I noticed again your mention of the right leg being more pained than the left. I seemed to see a correlation between a difference in the legs and my sleep position. Do you happen to sleep mostly on your left side? With my limb movements, when side sleeping, the limb on top (the free one) is the one most affected by the movements. I too have an appointment soon. I think I'll bring up the patches - hopefully they'll be back available real soon.

First of all, fill in the rest of the blanks, and check to make sure the information I have entered is correct:



Muffy

NM, use this one instead:



It looks like the Mirapex and Lyrica wasn't reduced until after the 6/9/2009 study, which would make sense given the 846 PLMs.

Yes, that's sarcasm.

Muffy

SaltLakeJan wrote:Hi SWS... I suspect the PLM's are still with me. I won't know without a psg or actigraph.

Hello there, Jan! I agree that a PSG would be great. I also like the actigraph idea. However, unlike an actigraph test, a PSG can at least record arousals and consequent sleep deterioration. And my understanding is that the difference between having some PLM's and PLMD is specifically sleep deterioration in that latter case, because of PLM-associated sleep arousals. So a PSG can help your doctor ascertain that ever-so-crucial PLM arousal index rather than an undifferentiated PLM count.

My understanding is that a PSG can also help your doctor determine if those PLM's tend to cause the sleep arousals---or if the PLM's instead result from arousals associated with yet other origins such as apnea/hypopnea events, pain or sensory stimuli in general. So PLM's as a primary source of disturbance; or PLM's largely as a secondary consequence of yet other events with sufficient periodicity (and thus differentiated via PSG arousal-event sequencing). Or perhaps yours are currently only PLMs with but a few associated sleep arousals. A PSG can thus also help you and your doctor determine if PLMs are not the main culprit accounting for your daytime symptoms...

SaltLakeJan wrote: I fit the description in the Cleveland Article of nonrestorative sleep, excessive daytime fatigue and sleepiness.

I suppose I nicely fit that same description the last few days as well. However, my nonrestorative sleep right now has largely to do good old fashioned pain. There are plenty of factors besides PLM's or even pain that can make us sleep poorly and drag throughout the day.

SaltLakeJan wrote: Wishing you an enjoyable Thanksgiving. Jan

You too, my friend... Happy Thanksgiving!

Hi SWS,

SWS wrote: I agree that a PSG would be great. I also like the actigraph idea. However, unlike an actigraph test, a PSG can at least record arousals and consequent sleep deterioration. And my understanding is that the difference between having some PLM's and PLMD is specifically sleep deterioration in that latter case, because of PLM-associated sleep arousals. So a PSG can help your doctor ascertain that ever-so-crucial PLM arousal index rather than an undifferentiated PLM count.

Thanks for the explaining what the PSG will specifically do. This information will help me get to find answers. Isn't that what we all want?

-SWS wrote:I suppose I nicely fit that same description the last few days as well. However, my nonrestorative sleep right now has largely to do good old fashioned pain. There are plenty of factors besides PLM's or even pain that can make us sleep poorly and drag throughout the day.

I am sorry you are having pain. It does have away of taking the joy out of life. I send you every good wish that it is temporary, & you will have a quick recovery. I have been bothered by pain a few times in my life. I am of the opinion that it should be banned from our existence.
Jan

Hi Muffy,
O.K., so I blathered, & blathered & didn't the one thing you asked me to do. Sorry! Does that seem like old times?

I am getting ready for welcome, but unexpected house guests tomorrow & haven't had time to verify the dates, but the Mirapex and Lyrica was reduced before the June 9th Sleep Study. It was in late April or May.

I would not have included the chart if you not not reminded me. Appreciate that.
Jan

( Edit) Muffy, I used your link to the UPPP surgery thread, I found I reduced the mirapex and Lyrica on April 13, 2009.

SaltLakeJan wrote:Does that seem like old times?

Pretty much.

If, after you have filled out the worksheet and wish to share that information with the group, I'm sure there will be more than a couple of interested parties.

Happy Thanksgiving. Don't eat too much.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675892/

Muffy

Muffy, Appreciate getting the information on compulsive behaviors. II had been on CPAP forum for a couple of weeks, when I noticed a thread on RLS. I posted to Kathy regarding RSL & Mirapex. I mentioned that recently (Christmas Season 2008) I suspected I had beginning form of compulsive spending. I cut the Mirapex back to 1.50 mg.in late January 2009. I didn't have a recurrence of over-spending.

When my eating compulsion began, I would awaken late at night and feel famished. It wouldn't lessen until I got up to eat.

Thanks again.

Jan