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

[SaltLakeJan]

Hi Bev, I began this post by explaining that I hadn't responded to your post, because I was having brain problems. I apologize. Your post showed what I admired when I first read your thread -you are one spunky person.

I have decided that I have to limit myself to time on Cpaptalk only after exercising for at least half an hour a day. I've been doing pretty well, actually running close to an hour a day with my new Wii. I can't believe that they have invented something that can get me out of the chair and moving! When my grandson comes over he has to work hard to beat my scores. lol

Right now, I'm, not developing the discipline I need for food and exercise. I just got the results of my sleep study and I had 846 PLM's. The result is no restorative sleep, and I feel like crap, and if I sit down, any place - car, movie, if something very interesting isn't happening, I am asleep in a second. You imspired me, I'm going to try walking again today. I have to take hold of this.I've got to get my brain working, as well as my body.

I had poured over parts of your thread again. I don't know how you had the courage to keep going.
The thing I am most bothered by now, is the effect the lack of restorative sleep has on my brain. I cannot express my self, and say the things I want. But I guess the four of us are some of the most fortunate people on cpaptalk.com to have the help from SWS, Muffy, R.G. Ojzi, and on and on.

"

Thanks for posting your picture. I like being able to "see" who I'm talking to Bev

I identified with you immediately by your picture, You look like a good-lookin' young mom. Is that your son or a grandbaby? I hope for you that your Gerd is a little better and that your activity with Wii will help uyou both feel much better, and the desire of all women. To lose any excess weight you have.
Sorry about not responding sooner, I appreciated your post, but my mind whent blank when I tried to say what I wanted to you. I sincerely hope my brain gets a recharge soon. It is the pits going around without it. Jan

[SaltLakeJan]

Muffy, I signed on to WebMD. MedScape sometime ago from one of your links. I never ignore a link from you, but, couldn't access the site until today. I heard the ever charming Diego G-Borreguero on the advantages of high dose Lyrica for PLMs. and its effect on slow-wave sleep. In my Dec 2008 sleep study I was taking Lyrica 300 mg. In clinical summary Dr observed: "Patient had increased amounts of Stage 111/IV slow wave or deep restorative sleep for her age" For my 6-9-09 Sleep Study, Lyrica was 150mg. reduced a couple of weeks after to 75 mg.Did the lyrica reduction of 150 mg from the Dec 2008 study, reduce the amount of slow-wave sleep? For the 6-2009 Sleep Review I asked the Dr about the lack of 3 & 4 stage sleep. He answered by use of staging chart, showing asleep & awake periods. Said he was satisfied I had regular periods of REM.

Muffy, did my PCP's reduction of Lyrica and Mirapex amounts cause my PLMs to go crazy? He is the same Dr who Dx Ritalin for me. I changed to a new PCP yesterday. Preliminary phys exam heart and lungs sounded good. Said my eyes showed evidence of deep fatigue. He agreed with Dr. F. said 150 mg of Lyrica is my beginning place for treatment of PLMs. Will increase later. Dr F. said in his HO Mirapex was the gold standard for treatment of PLMs.
New PCP was not as certain.

Dr F. would not go in detail on PLMS chart.(arousals) Was much more interested in encouraging me to use Nuvigil. Also it was interesting listening to him urge me to begin regular nightly doses of hydrocodone. I let him flounder a bit, then ask if he was going to prescribe it. No, he wasn't. Big surprise. He gave me a dx for ultram & Nuvigil. Said I met the criteria for it. I haven't started narcotics for back pain, & Utah has strict prescribing laws for physicians. I can't imagine anyone giving me 365 pills of hydrocodone for a years treatment for PLMS. I asked if it was for pain. No it was to improve my sleep. DH LOL when we got out. Dr F. wanted me to take it but not enough to endanger his medical license.(not that I blame him)

I felt strong feelings from both the tech & Dr F. when I asked about a back-up unit for trips. Said I had used ResMed 8 Elite ll. It was a nice compact unit and I would be interested in the LCD data.
Tech said if you have a good Dr. you don't need that. Dr F. said if you get another unit, get a F&P. Said you didn't get 100% leak free with ResMed.

The F&P charts I saw were compliance charts. Only my 100% had breaks in them, and each break would have a 100% attached. I thought I had leaks, and would take mask off and adjust and put it back on. The pink line under 100% s indicated it was "run time"

The 100% is not clear in my mind.Do I rely on it? He said mouth leaks too. Did I understand him right?

Maximizer Distructions wrote:

The % figure shown against each night usage represents an indication of mask leak. 100% represents a perfect mask seal with no leak, the lower the % the higher the leak.

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Muffy, it sounds perfectly clear, but I am going by my experience. I always had mouth leaks (unless I taped) with ResMed. Since I started F&P, I recall wakening a few times with my mask askew. Surely, that would count as a leak.

Muffy, Thanks for having the patience to hang with me. The technical aspect of Sleep Apnea is difficult for me. I do appreciate what you are doing for me.

It is true I am not getting the amount of restful sleep I would like, but I continue to work on my sleep habits. I think it will lead to a better quality of sleep. I didn't think life-long insomnia could be changed. Following your sleep guidelines to B.B., has given me the greatest piece of helpful advice that I have ever had. Usually, I am ready to fall into bed by 10:00 10:30. I get to see a lot of beautiful sunrises now.

I am studying the rest of your responses now. My brain is so foggy, I can't follow anymore more now.

Thanks again, Jan

[OutaSync]

Jan,

Believe me, I totally understand the brain fog from lack of restorative sleep. Some days I'm just pretending to work because I can't think at all.

The child in my picture is my oldest granddaughter. She's seven now, so that picture is about 4 years old. Taken before my fall in '06, from which I am still in considerable pain. I have five grandchildren, the oldest is eleven. I'm single, so when I have the four, that live nearby, over for the weekend it is exhausting.

Hang in there, girl, we're rooting for you.

Bev

[Muffy]

I also hope to hear comments and suggestions from our "Big PSG Gun", Muffmeister...

Watchoo mean, "big"?

Muffmeister's "Big Gun"
aimed at PSG results
(shown above)

How can that be Muffy? That's a guy.

Well, I do have a photo of me riding to work in the van. Let me see if I can get it uploaded...

OK, here I am, riding "shotgun", so to speak, on the way to work:



We seem to have solved the problem of "rush hour traffic".

Come to think of it, we seem to have solved the problem of traffic, period.

Muffy

[SaltLakeJan]

Morning Muffy,

While you have been posting to this thread, I wondered what you looked like. Now that I have seen your photo, & your van, I'm not too surprised. Neither you or your van are mundane. The van is a little more technical that I expected. However, your locale obviously requires a higher level of traffic control. After the regular commuters observe you clear traffic once - they know they can't mess with the Muffmeister. When they hear you are in their vicinity, - all traffic magically disappears from the roads and freeways. I wish we had sky hooks for some of the slow traffic around here.

Thinking of your experience, I didn't realize you were so young. A prodigy perhaps? But the look in your eyes - the look of steely-eyes competency is exactly what anyone would expect from you.

You mentioned you enjoyed the Olympus Mountain area, If you need a change of pace or If you ever have a yearning for an early morning run along the Wasatch - can you contact me?
Do you have a sideline occupation that you do just for fun. Maybe population control. We have a problem, our neighborhood has gone to the dogs. The neighbor who lives east of us, is a tad eccentric. She has been engaged to the same guy for over 30 years; she is also an animal collector. I told you earlier about her five King Shepherd Spaniels. Salt Lake Animal control allows three dogs per residence. Due to the economy, our City Gov. has fewer dogcatchers, and the law isn't enforced.

Recently DH noticed the barking level reached a new decimal level. I've been kinda out of it &
wasn't too aware, so he did the investigation. Our neighbor now has eight, count 'em, eight dogs.
Her finance moved to a new apartment, and discovered they allow one pet per apartment. He didn't want to split his pets, so all three have come to live with her animals. Our neighbor is a social worker for the police department, so I can't expect help from Animal Control or the police.
I'm looking for an independent contractor to take care of this for us. Do you have any suggestions?

I have another problem I will take up with you later. The dogs are out for a recreaction period and the barking is so loud, I can't hear myself think. Later . . .
Jan

[-SWS]

Wow, Muffy, you're one hot but potentially contentious babe there! If that's you gunning for traffic on the driver's side or "left mount", can we assume your animated sister is a kickin' butt over on that Dodge minivan's right mount"? And a nicely tricked out Dodge minivan that is!

I have another problem I will take up with you later. The dogs are out for a recreaction period and the barking is so loud, I can't hear myself think. Later . . .

My advice: Never ask a woman with a genuine fetish for machine guns for solutions to problems with our beloved pets...

[kteague]

Where do you all find these pictures??!! Or better yet, how does applying them to topics here ever cross your mind??!!

Jan, I got your PM. I do understand what that weariness in every fiber of our being feels like. I wish 10+ years of experience dealing with PLMD had garnered me more answers instead of just insights. Some people have mild cases of it and sleep thru the movements and have no pain from it. All I know is when it's bad, what it can do to a life can make one willing to risk the side effects of the meds to get some relief.

I have had periods of time during those years where the medicine worked somewhat so I got at least some decent sleep. I haven't had to live every day of that time with the utter weariness and severe pain. I hope my warnings here about the meds hasn't hindered anyone from doing what they have to do to get relief. My intent has been awareness, not saying to not use them. It sounds like you are at the point of not worrying too much about keeping your dose down since the low partial prescribed dose isn't working. Maybe the reason your doctor didn't say to do more about the leg movements is that you yet have the option of taking the entire prescribed dose. If you do decide to do that, I'd love to hear how it works for you. Of course I'm just guessing, but it will likely give you some relief for at least several months, maybe even a few years.

Keeping your ferritin level up and getting plenty of magnesium and calcium could help too. If your limb movements are indeed due to a back injury as you suspect, the ferritin shouldn't be a factor, but keeping it up shouldn't hurt and could help in case they were there before the injury.

My personal experience with the dopamine agonists Mirapex and Requip taught me to be aware of the side effects. Also learned that eating just a little makes them easier on the stomach, but eating very much seems to keep them in the stomach too long and decrease their effectiveness. When I was on the dopamine replacement Sinemet, optimizing its effect was much trickier and seemed more intricately tied to diet. (If anyone is on Sinemet and would like me to share more about that, let me know.)

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. Can't help but think my giving in and giving up compounded my problems, as inactivity introduced another set of issues. Didn't feel I had a choice at my worst, but in retrospect I wish I had somehow found the gumption to keep putting one foot in front of the other instead of sitting down and staying there. Makes the road back seem mighty long, but I'm trying to get there. Please know I have been inspired and motivated by you and others here who speak of maintaining some normalcy in your activities in spite of how you feel.

Kathy

[Muffy]

Where do you all find these pictures??!!

Right now, I'm using a Kodak Z885.

Or better yet, how does applying them to topics here ever cross your mind??!!

Tried "normal" once, didn't particularly care for it.

Muffy

[SaltLakeJan]

SWS [quote="-SWS"]My advice: Never ask a woman with a genuine fetish for machine guns for solutions to problems with our beloved pets...


STP's STP's Save The Pets!!
What ever made you think I was talking about pets. No, No, they are innocent little darlings. It is the owner (s) who are the problems. I thought the Muffmeister would be equipped to solve any problem. My ideal solution would be to involuntarily relocate the adults. I had considered Iraqi, now they are a peaceful nation. My neighbor is a very nice person, I like her - just not so close to our home.

The dogs are precious & we all would love to have them. Perhaps we could divide them among the eight closest neighbors. We could take them all to the nearby park for their playtime. They usually use our long front lawn whenever she lets them out. They would not feel far from home & could meet over here for an afternoon gathering.

Plus, she has a 'nother tiny thing that bugs the neighbors. She leaves cat food out for the stray cats which is OK. However, it has attracted racoons. They are friendly little buggers. They come for unexpected visits through the doggie doors. One neighbor had two calling on her, thru her second story window. No, the screen didn't stop them, it was more of an appetizer for the damage they did in the house. Our neighbors are having nightly adventures with the racoons.

On second thought, perhaps Iraqi isn't far enough away. She really loves animals, if she could be in a wild animal park somewhere, she would have the lions eating out of her hand in 20 minutes.

Help, Help,

Jan

[Muffy]

The dogs are precious & we all would love to have them. Perhaps we could divide them among the eight closest neighbors.

Damn. I wish you were more clear on that. Unforunately, we took the eight dogs and divided them among 16 Koreans.

Muffy

[SaltLakeJan]

Muffy,

Thank you, thank you, I need to ROFL, and I am. The last post will keep me LOL all day.

Jan

[SaltLakeJan]

Hello Ozji,

I always appreciate it when you review whats going on with this thread. You, Muffy and SWS have helped me understand that I do still have a need for cpap therapy. I am confused by the great differences in my sleep studies. And, while I was using ResMed Elite - my cheeks pulled out, and I couldn't do anything to get the air pressure to direct to my throat. I have the same circumstance using the Fisher & Paykel 608 - but to a lesser degree. The difference is the only data I have now is Compliance and Leak. I have no idea how my A1 (ect) on F&P compares to what it was on ResMed.

When I started cpap in January 2009, I went from never feeling sleepy to scarcely being able to stay awake. That has never left me. Apparently, starting cpap unleashed the growth of PLMs and the sleepy feeling is the result of almost seven months of nonrestorative sleep. I feel as though I have a tiger by the tail, and don't know how to let go. However, I am putting my full efforts toward better sleep habits, bright early morning light, no caffeine. ect. All the things Muffy included in his sleep improvement list to B.B.

I went to a concert last week. One I had looked forward to because it included compositions of the Hungarian, Court Zichy. He was a composer & pianist who lost his right arm, but went on to compose music including pieces written for the left-hand only. Unfortunately, I slept through most of it. DH said I am getting better at it. I can hold my head steady while sleeping. This is so unlike me, it is taking some getting used to.

You were absolutely right about the desaturations in my earlier sleep studies. I have an oximeter and I use it periodically.


If you have any suggestions for me, please send them along. I had logged previously logged on to Muffy's blue underlined link. For unknown computer reason, I couldn't bring the site up for a couple of days. , but appreciate the reminder.

Thanks much, Jan

[sleepyAndrea]

HI All,
This is my first post here. I found this site when googling for results of Regis' Philban's sleep study which they talked about on their show, Regis and Kelly, this past Thursday. It happens tthat I was in the waiting room to see my sleep dr that day and saw that they were doing a segment that week on sleep. I have Obstuctive Sleep Apnea and use a CPAP. I used a CPAP when I was first diagnosed in 1992 solidly for a year and would take it off in my sleep. In 1997 I had a UPP and my chin extended to help with the sleep apnea. It didn't help completely remove the apnea. To this day I still have aches in my chin . I wouldn't recommend the UPP as an adult as one gets a very bad sore throat for at least 2 weeks which is like a knife is in your throat when you swallow!! They usually remove the soft palate by laser.
I just started using thei CPAP again in January and am not finding it is helping with my sleep. I still wake up during the night and have trouble getting out of bed in the am. I also have asthma which when I am having an asthma flare up like a cold it is hard especially hard to have something covering my nose.
Andrea

CPAP: Resporonics M Series Heated Humidifier
Mask: ResMed Mirage Micro Nasal Mask
Pressure : 7

[SaltLakeJan]

Sleepy Andrea

You story sounds like the beginning of mine. UPPP only removed part of my sleep apnea. I didn't know that I still needed to be treated. Have you received the results of your sleep study, and have you registered on Cpaptalk.com. This forum is the place you can find the guidance you need to make your therapy as satisfactory as it can be.

You can go to the User Control Panel just under the white search bar at the top of the page. Complete the registration including listing your equipment in text rather than picture. I see now you listed your equipment at the bottom of your post. Your pressure of seven may be your problem. What has your sleep doctor advised?

You are absolutely right, asthma can complicate your therapy. I restarted cpap in January of this year also. We have a lot in common. I would urge anyone contemplating UPPP surgery to avoid it. You still have to use cpap to control what is left of the sleep apnea.

Please keep in touch, you will find many people here who will do all they can to help you adjust to your therapy.

Look forward to hearing from you again.

Jan

[SaltLakeJan]

Hi Kathy,
Since I got the results of my last sleep study, I have gone through your posts on PLM's, and reviewed the post where I replied to you that I had dropped half my Mirapex and was doing exercise to take care of my leg movement problems. Can't say you didn't warn me. I had no idea I was opening the door for the limb movements to fully express themselves. I only hope others will read your comments on PLM's and follow your advise.

When I started Cpap in January, and went from tired to exhaustion and when I sat down I fell asleep. Others who started about the same time were posting about how improved they felt - the increase in energy was terrific. What I was doing was getting deeper in a brain fog of unrestored sleep. At least I understand part of it now.

You asked if I was attending to my Cpap therapy. I now think that my new sleep doctor was right in changing me from my beloved ResMed Elite to the Fisher & Paykel 608. I was reading information about my unit today and the effect of the superior humidification on cpap.

As to the care of my limb movements, if you read one of my reports from my sleep Doctor, he wants me to take Nuvigil (to relieve the daytime sleepiness) and get a prescription for hydrocodone or another controlled substance and take it on a nightly basis. He said this would keep me awake in the a.m. and help me sleep in the p.m.

Do you take Nuvigil or Provigil, and do you know anything about it? I hate to add one more prescription to the ones I take. And, our state is clamping down on the use of prescription pain pills. I know people who have had failed back surgeries, and are in terrific pain, and they can't get pain medication. Also I just had a friend die of cancer. She died in strong pain because of the limited amount of pain medicatiion they would give her. I know I could get a few pain pills from my back doctor, but I also know he would never prescribe one a night for me, for as long as I needed it. By then I would probably be addicted, and in worse problem then I am now.

You have dealt with this "Life Changing Event" for 10 years. I don't know how you have had the courage to keep going and be a prime support to both the newbies and the people with problems in Cpap. In my early days on the forum, you came to my aid several times> At that time, I didn't have any idea of what it cost you to continue to give.

I also think you are preceptive in linking my additional back pain that has come in the last 7 months to the activated PLMs. I had done more gardening, and I linked it to that, but I believe you are right.

Kathy, you said I was trying to live a more normal life. It was easier to do that when I didn't know what I had, and how much the activity cost me in energy spent . I have loved to have my youngest grandchildren come a week at a time. I was so fatigued after the last 3 in June, DH doubts that I can do that again. IMO i'll have them for a day, and be glad I can do that. I do like photography and have hundreds of pictures of my flower gardens at various stages. I like being up just after first light, and taking a picture of the open bloom, and do a series of time-lapse-shots until the bloom is open. The pictures aren't great, but it is a great distraction.

Do you have a problem sleeping at night- with all the movements. For a while I was going right to sleep, but lately even my arms are jerking. Does PLM's move into the upper body? I hope not.
I am kinda like a baby, I want to sleep all day, and not at night.

You were an inspiration to me with your kindness before I had the barest idea of what you have experienced for 10 years. I'm looking to you to know what to expect and how to handle it.

With appreciation for your thoughtfulness