Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Jan, I understand your concerns about meds. Once I give up on Requip, my next move will probably have to be to narcotics, but I'm delaying as long as possible. Does your doctor think you are taking the full prescribed dose of Mirapex? Usually narcotics are reserved for when other meds won't work. Meds that will just make you sleep thru the movements and not stop them won't help the pain that comes with the joints and muscles never resting. (Yes, the arms can be affected.) Taking wake up pills during the day may be needed in addition to treating the movements, but I don't think they should be given in place of treatment. It will just give a false sense of things being better. I do take 200 mg of Provigil in the mornings. Taking more causes me to be jittery with palpitations. Rather be sleepy.

Just my opinion, but I think you owe it to yourself to see if the Mirapex will work for you. If you start to have side effects, you can always wean off of it and try Requip. These are dopamine agonists, designed to prompt the brain into operating as if the dopamine processes were normal. If those don't work, there is Sinemet, which actually replaces the dopamine in the brain. So you have not exhausted your options yet, if taking narcotics is a path you don't want to travel. Many people are helped by these meds and no longer suffer with the limb movements. You may be one who can get your life back like that.

About your new machine - I'm glad you like the humidification, but I'm more than surprised that with all your problems your doctor felt humidification ranked above data. How in the dickens are you supposed to know if your cpap treatment is causing you trouble or your legs? Ok, I'll leave that alone.

Jan, I do hope you get some relief soon. Please keep us informed of what you do and how it's working for you. I hope you are able to continue your flower photography and even the time with the grandkids. It can happen.

Kathy

Kathy,
Thanks much for your expertise with the drugs required to hopefully tame PLM's I think the number of them is what has thrown me in a shocked state. I read on an internet site that over 50 is severe.

Don was with me at the appointment, & we both felt his PLM treatment plan was to take Nuvigil at 150 mg, in the a.m/ For p.m. treatment get hydrocodone or other narcotic in the p.m.. Plus increase my Lunesta to 3mg. That is already my dose. I asked about the dose for Mirapex, & Lyrica, use 150 mg Lyrica & Mirapex 1.5. In Jan my previous pcp suggested 2, 1.5 Mirapex was too much - & Lyrica 150 too much, didn't say more . I don't blame him, I made the decision to reduce.

Dr F. didn't give a PLM treatment plan in his conclusions or recommendations. In his Clinical Observations, he wrote:
"some limb jerks were observed" , Her sleep profile was notable for the frequent nonspecific awakenings as well as periodic limb movements. It seems more likely that nonrestorative sleep is linked with poor sleep continitunity and possibly the presence of lumb jerks.

If I had not picked up the charts a day earlier, we probably wouldn't have discussed it as long as we did. He did say don't pay too much attention to the PLMs.

I am doing what I can - I am following sleep hygiene - I've gone to sleep with TV on for years. In May I began following Muffy's sleep plan. I decided I would watch a half-hour after bedtime. & have caffeine on an occasional basis. I have eliminated both of those.

I changed pcp's to the one Don uses. I gave him a copy of the sleep study. He commented that he had never specificially treated sleep problems, but he would see what he could find.

In my first conversation with Dr F. he made it clear, he did not like, or see a need for patients to be envolved in data capable machines. And I have talked to two technicians connected with his Sleep Disorder Center - they have no use for them. Dr F. said, "with data capable machines, patients think they become doctors "-

SWS and R.G. helped me get my prescription for a cpap unit. I don't like flying blind so I want to buy a second unit. I am familiar with Res Med Cpap Elite - but I don't know if that is the unit I should buy. I think Dr F. wonders if I am going to switch units, because he said when I go back for my next appointment - I think it is in 6 months he will do a compliance check again. I have no idea where my treatment will take me, I had considered an auto & use it in CPAP mode. but I see jnk is trying to go back to straight CPAP. I'm not too thrilled to spend so much money, but I believe it is necessary.

At first I wondered how I could tell if I had restorative sleep the previous night. I find I can tell within a half hr of getting up. When I sit down to read the newspaper and promptly fall asleep, I know my body is desperate for sleep.
Kathy wrote:

kteague wrote:Just my opinion, but I think you owe it to yourself to see if the Mirapex will work for you. If you start to have side effects, you can always wean off of it and try Requip. These are dopamine agonists, designed to prompt the brain into operating as if the dopamine processes were normal. If those don't work, there is Sinemet, which actually replaces the dopamine in the brain. So you have not exhausted your options

This my most important issue right now. Today, I am afraid to increase them, and afraid not to. I no improvement in restorative sleep, in a week. I will c/ Dr F. and ask his opinion about warily increasing both Lyrica & Mirapex

kteague wrote:My personal experience with the dopamine agonists Mirapex and Requip taught me to be aware of the side effects.

what are the most helpful things you do to deal with pain, and sleep.? Has anything helped you get restorative sleep?

I believe the things you are telling me, will help me to improve and not get as bad as you are.

kteague wrote:How to live life with this weariness? I confess I haven't been very successful in living with it - much of the time its been more like surviving. Keep in mind I have other health issues, so my story doesn't have to be your story. Inactivity introduced another set of issues. Didn't feel I had a choice at my worst, . Makes the road back seem mighty long, but I'm trying to get there

Using your advice as my motivator, I am going to the spa this afternoon, and try for a beginning.

Thanks for the guidiance. You know about PLMs and what works more than a doc.

Jan

SWS, I am starting to think about a data capable machine. I liked my ResMed 8 Elite ll, but since ResMed has restricted the sales of software to professionals, I am unsure what to get. Do you have suggestions for type, brand, Auto, Cpap?

Dr F. has his own methods, and they do not include data machines for patients. I noticed the two techs I talked to were strongly against patients wanting data. I will keep the F&P, I do believe Dr F. was correct in stating the extra humidification was something I needed. It also has a heated tube that prevents condensation. The self-adjusting heater plate can compensate for changes in the room temperature. I like the F&P unit & features, but I do not like not knowing where I am in my therapy. It is frustrating. I I get a second machine, I will use both alternately.

Do you have any information on the use of magneseum for treatment of PLMs, I have found a couple of PLM treatment sites online, that caution again the use of minerals - can turn toxic. Dr Christopher F. O'Brien has a chapter on Sleep Disorders. He included a substanstial section on Periodic Limb Movements. If Mag was deficient, he utalized Magnesium therapy using 12.4 mmol qhs.Dr F said contiue with magnesium and you can up it. No specifics or milligrams.

Dr Farney was very specific in wanting me to begin Nuvigil therapy and to get opiates to put me in a deep sleep at night. He said as long as I can tolerate Mirapex, he considers it the best drug for treatment of PLMs. My previous PcP had reduced the amounts of Mirapex and Lyrica, just after the June sleep test. Dr Farney was called away just as we were discussing mg to take. He left saying continue on present doses. Not knowing they had been changed.

I have found several internet site with tips to improve the quality of sleep. I would like to control the PLMs, but where reasonable, I am trying to improve the quality of my sleep. I am going to try the sleep tips and see what happens in two/three of weeks, then call Dr. F. for a consultation re: PLMs. I have also decided to be much calmer about the situation. Things have a way of working out.

Will apprreciate any suggestions.

Jan

Jan, I think under the circumstances I'd be tempted to get the Sandman + HC150 bundle:

https://www.cpap.com/productpage-bundle ... undle.html
-and-
https://www.cpap.com/productpage-bundle ... eader.html

I suspect running fixed pressure makes a lot more sense then running APAP pressure since you did seem to have signs of CompSAS in the past. And that's the same reason why I'd get the Sandman machine and software: to see if your nights of elevated AHI are actually central or mixed in nature versus purely obstructive.

But in light of your PLM problem (which can presumably elevate central AHI as a matter of PLM stimulus/response), I wonder if your home-monitoring money might be better invested in that Actigraph you've been eyeing:
http://www.theactigraph.com/index.php?o ... &Itemid=87

Which is much better priced than the Resp Actiwatch:
http://www.medexsupply.com/diagnostic-s ... 20371.html


P.S. I also suspect that your back issues can trigger PLM's---and have noticed that narcotic pain relievers are sometimes prescribed to minimize PLMD.

Hi SWS
Thanks for the information re: The Sandman cpap. You must have an ability to read my mind.

From Sleep Review by Pres. of Ambulatory Monitoring
Q. "Do you have a favorite brand or model of actigraph for home use?

A. Kathy:
When evaluating actigraphs for the purposes of estimating sleep, the most important information to ask for is the sensitivity (ability to detect sleep) and SPECIFICITY (ability to detect wake) in a mixed population (what you’d expect to see in your lab). Some companies will provide validation studies on normal subjects which are almost useless. This is because when the subject population sleeps very well even insensitive actigraphs demonstrate a high agreement to PSG. Don’t settle for published articles that demonstrate a “high correlation” with PSG. That’s also a useless statistic. Ask for published articles demonstrating the sensitivity and specificity against gold standard PSG"

I have been doing a bit of research on various actigraphs. I'm not going to doing anything for a while. Dr F. is back in the office. He c/today & is sending me a model of sleep diary, and daytime sleepiness log. He hasn't received the tests back yet. Doesn't want to change meds until he can evaluate the Ferritin. Yesterday I received material on improving my sleep envionment, preparing for sleep, etc. from his office. Similar to Muffy's list, but had a few unusual items. To keep the bedroom fresh & cool, keep a fan running through the night.

Dr F. asked if I had noticed any improvement. I told him I have a non-scientific way of determining what's up. I can stay awake as long as I am moving or something interesting is happening. But, If I sit down to read the paper, or watch the news, I am asleep in nano-seconds.
I was hyped-up for the sleep study, and didn't realize how exhausted I was. Every day, I find myself cutting back on any activity.

I am just going to go with the flow, and keep my

However, James Brown can make me feel so good, any day of the week. And following him was Roy Obirson, singing Oh! Pretty Woman. I got their albums out, we listened and enjoyed to the max..

Take care, I think about you and Muffy, and I was glad to hear from you.

SaltLakeJan wrote:Dr F. is back in the office. He c/today & is sending me a model of sleep diary, and daytime sleepiness log.

This ain't a bad one:

http://www.sleepeducation.com/pdf/sleepdiary.pdf

Muffy

riverdreamer wrote:

SaltLakeJan wrote:The doctor wants to have my ferritin levels checked - are CPAP patients frequently anemic?

Jan

Jan, you say you have been diagnosed with Chronic Fatigue Syndrome (CFS). People with those issues are often either anemic (low ferritin) or may have hemochromatosis (high ferritin). Either one can make you extremely tired. Low ferritin will make you tired due to low oxygen carrying capacity. It is also associated with Restless Leg Syndrome. High ferritin makes you tired because it damages organs. Either way, it is a good idea to check.

Got a call from my doctor yesterday. My ferritin count is 7. He likes them no lower then the 50's. Hematocrit also low. Wanted date & Dr name for my last colonoscopy-(March 2008)

Always somethin' going on

Jan

Jan, maybe getting that ferritin level up will help you in more than one way. When my ferritin was checked, I was told the levels on a CBC can remain in a normal range as long as there is ferritin to pull from, and that when the ferritin supply gets low, it starts to show on the HGB & HCT. I'm sure that's a generality and not applicable in all cases and causes of low counts. We have one board member whose anemia (and resultant RLS) is so severe that she gets infusions periodically. Says her legs act better after the infusions, so at least for some there is a correlation. Let us know as you get more information.
Kathy

Morning Muffy,
I was waiting for a sleep diary & I wrote:

Muffy wrote:SaltLakeJan wrote:
Dr F. is back in the office. He c/today & is sending me a model of sleep diary, and daytime sleepiness log.

You wrote:

Muffy wrote:

This ain't a bad one:

http://www.sleepeducation.com/pdf/sleepdiary.pdf[/quote]

You are right - (as usual) the sleep diary you sent the link for, was the type I needed. Thanks.

I found the Muffmeister makes a practice of giving good advice. When I started following the sleep hygiene information you sent B.B., it became a positive, life-changing event for me. I thought once you were self-diagnosed & dr. diagnosed with chronic insomnia - that was your fate for the rest of your life.

It wasn't the easiest change I've made, but I incorporated every part that applied to me. I soon discovered if I awakened in the middle of the night, It was easy to choose more sleep over turning on T.V. to watch "Morning Joe". I am having a lack of restful sleep right now - if I had not eliminated caffeine and watching T.V. everytime I I woke, I might be feeling much worse than I am. I found absorbing the sleep hygiene information into my lifestyle, the most significant improvement that I could have made.

I don't know how you ever unraveled my sleep studies, medications and medical history. It must have been like putting a 5000 piece puzzle together - with 1/4 of it missing. I learned much that have never been explained to me.

Muffy, your efforts for me were not easy, but they improved my life - The words, thank you, doesn't convey the value I place on your work. But . . . what else can I say, but thanks?
Jan

SaltLakeJan wrote:Got a call from my doctor yesterday. My ferritin count is 7. He likes them no lower then the 50's.

Hi, Jan,

You might find this medical journal article of interest. It may be where your doc got the idea of ferritin levels should be at least 50.

Verdon F, Burnand B, Stubi CLF, Bonard C, Graff M, Michaud A et al. Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial. BMJ 2003; 326(7399):1124-1128. http://www.bmj.com/cgi/reprint/326/7399/1124

Hi howkim,

That article had a lot of good information. I am going to take it to the dr.s office with me. I"m discovering the better you are prepared for any doctor appoint. the more information you will get back.

Thanks howkim

Jan

My (new) PCP said the next step in determining where I am losing blood is a capsule endoscopy.
The PCP I used for several years, had the same test results for over 6 weeks, has not called me about low Ferritin. I haven't notified him I got a new Dr. The new PCP,, had test taken & within a week notified me of the problem & initiated treatment.

"Capsule endoscopy uses a swallowed video capsule to take photographs of the inside of the esophagus, stomach, and small intestine. . A large capsule-larger than the largest pill-is swallowed by the patient. The capsule contains one or two video chips (cameras), a light bulb, a battery, and a radio transmitter. As the capsule travels through the three organs, it takes photographs rapidly. The photographs are transmitted by the radio transmitter to a small receiver that is worn on the waist of the patient."

PCP said he hopes this will reveal the cause - but there is a problem with the procedure. They get too much information. At best, only a small amount of the tens of thousands of photographs can be reviewed because of cuts to Medicare.

He made the observation, you are a new patient and I don't know if you need a knee or hip surgery,- if you do I recommend you get it done. There are calls for large cuts to Medicare & Medicaid to help fund health reform. If enacted, there will be changes for those using Medicare & Medicaid.

Nope, my knees and hips feel just fine, thank you. PLMs & nonrestorative sleep are my problems.

Jan