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

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 9:41 am

Muffy wrote:
robertmarilyn wrote:You trying to teach Muffy a lesson for his/her rant about graphs?
See, whenever I see "robertmarilyn", it's tough to visualize what she looks like.

Ewwwww, I do see your point Muffy

I will at least be sure to sign my posts Marilyn from now on...and maybe get a pink bow to put on my avatar's bald spot
Marilyn

-SWS · Post by **-SWS** » Tue May 12, 2009 9:44 am

-SWS wrote: The most striking common pathology between CFS and CompSAS/CSDB patients: that following-day fatigue that is grotesquely disproportionate with residual AHI for those CompSAS/CSDB patients. I would thus wonder how daytime arousabilty traits compare in those two populations alone. And I would wonder how the wake-to-sleep transition compares---as well as the remainder of sleep in relation to cortical/autonomic arousals.

Jan, I would also add that SDB (a very measurable disorder with well-known underlying etiologies) is undoubtedly misdiagnosed as CFS (a syndrome that frequently presents doctors with an extremely difficult differential-diagnosis challenge). Entirely valid SDB/CFS dual diagnoses are very plausible as well IMO.

However, IMHO, theory should never take a diagnostic front seat, when traditional medical facts and methods have yet to be exhaustively considered. So I think we should continue analytically sorting through the realm of known medical facts. The above posts were only idle-curiosity thoughts---and hopefully stimulating ones---that I wanted to share.

But I will add your upcoming sleep study and doctor(s) visits should turn out to be very helpful. At least I hope!

robertmarilyn wrote: Ewwwww, I do see your point Muffy

I will at least be sure to sign my posts Marilyn from now on...and maybe get a pink bow to put on my avatar's bald spot
Marilyn

For what it's worth, I really loved that movie Dr. Strangelove. But seriously, you come across as Mar and only Mar to me... and what a wonderfully pleasant person that Mar seems to be!

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 10:16 am

-SWS wrote:
robertmarilyn wrote: Ewwwww, I do see your point Muffy
I will at least be sure to sign my posts Marilyn from now on...and maybe get a pink bow to put on my avatar's bald spot
Marilyn
For what it's worth, I really loved that movie Dr. Strangelove. But seriously, you come across as Mar and only Mar to me... and what a wonderfully pleasant person that Mar seems to be!

The first time I ever saw that movie was in my high school history class, long after the movie was made. (My history teacher was really the football coach so history class was a lot of fun ). And look ...in the movie, the President's name was Merkin Muffley

-SWS wrote: seriously, you come across as Mar and only Mar to me... and what a wonderfully pleasant person that Mar seems to be!

Seriously here too...thanks, that means a lot to me

I'm paying attention to the thread and looking up the big words and getting smarter, I hope

Mar (not Rob )

SaltLakeJan · Post by **SaltLakeJan** » Tue May 12, 2009 11:59 am

To Everyone
I want to chime in on the RobertMarilyn post I.D.. When I initially noticed it, and read about her complex medical history, the post I.D. represented a united couple. fighting for a diagnosis & treatment.

I also would vote in favor of Mar for a "sign off" signature. She is an open, friendly person and has compassion for others. When she signs off using "Mar" she sounds like a long-time friend.
Jan

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 12:29 pm

SaltLakeJan wrote:To Everyone
I want to chime in on the RobertMarilyn post I.D.. When I initially noticed it, and read about her complex medical history, the post I.D. represented a united couple. fighting for a diagnosis & treatment.

You really hit on something with the united couple. Even though my husband was an Air Traffic Controller for 25 years (retired one year ago) and he had to struggle to cope with a career that required him to work 2 day shifts, 2 evening shifts, and a midnight shift, almost every week of his career, he also had a wife that was even more tired than he was Yet, he never doubted that something was wrong, he KNEW, despite what doctors would tell me over and over, he knew that the problem was not "in my head" (well maybe it is in my head if it is central/complex sleep apnea...but that isn't what the doctors meant). Anyway, I could not have made it this far, with such a good attitude, without the support of my husband.

I also would vote in favor of Mar for a "sign off" signature. She is an open, friendly person and has compassion for others. When she signs off using "Mar" she sounds like a long-time friend.
Jan

Know what is funny? Over the years, as I have attended endurance rides throughout the country, I have gotten to meet long time endurance riding internet friends. Since my name is Marilyn, I've always thought of my internet sign off signature of mar to be pronounced as mare. Didn't occur to me that others would see my name as being pronounced differently until I met so many endurance friends in person and a lot of them call me mar, pronounced mar (like the word that means to spoil or to destroy). I have never corrected them though...so I answer to mar no matter how it is pronounced.

And thanks for your kind words...in the years before my UPPP operation, when I was so exhausted I could do almost nothing at all, treating others with compassion was something I COULD still do...it became important to me and it has stuck even when I have felt better after surgery.

mar (pronounced any way you want to pronounce it)

SaltLakeJan · Post by **SaltLakeJan** » Tue May 12, 2009 6:01 pm

Hello Muffy and SWS,

After the dentist, visited with DME. The F&P unit is the 608, intragated humidifier with heated breathing tube. The HBT is supposed to prevent condensation and will auto adjust to the amount of humidification needed. I asked what the plan was, my R.T. said they are going to switch my unit out the F&P. It's beyond the time for me to change units. Since the owner & I had a chat in March, he said to give me what I want. They have to eat my unit and use it for a loaner. I told him to get a price on my ResMed, He will let me know. IF it is too costly, I plan to buy from CPAP. Does this meet with the approval of my Apnea Guidance Counsellors?

Cpap was not used in 12-2008 sleep study. Recommendation: 1. The patient should resume CPAP therapy, or return to the sleep laboratory for another polysomnogram with CPAP titration. There are newer mask available which she might find fit well and would not leak as her prior mask did. She also needs to wear CPAP with a positive attitude realizing it will help treat her sleep apnea and *possibly her daytime sleepiness. She does use Ritlin during the day.
2. The patient should avoid **supine sleep as her sleep apnea is more severe in the supine position.
3. The patient should have a follow-up clinical evaluation and overnight ***oximetry performed approximately one month after intitation of CPAP in the home environment for determining its effectiveness.

* Daytime sleepiness, Dah I scored 1 on Epworth.
**I'm working eliminating supine. I am going to try a version of The Falcon - see if my back can stand it. Today I inquired again about FF mask @ DME, they didn't encourage it. I will order a chin strap.
*** The 12-2008 sleep doctor arranged for a over-night oximiter, I think it was it March. They said if I didn;t hear from them, my oxygen was O.K.. If you want the results, let me know.

I thought I would take one consideration off the table. Some place, somewhere, depression was mentioned in connectiion with one of the many conditions that have been hypothized. I am not the goody, goody sickly sweet type, but I have a pleasant dispositon. My on-going health problems have not depressed me. They have been a part of the ups and downs that occur in life.

In spite what seems like never ending fatigue, DH would agree that I have something like a cognitive arousal trait. I enjoy getting involved in a project, canot quit until it's completed. At times, they are so interesting, I use more energy than I have.

Muffy, you mentioned a heart graph, is that the Heart Rate Summary? And, I see a small graph that is a SA02, do you want them?

Jan

Muffy · Post by **Muffy** » Tue May 12, 2009 8:25 pm

What medications were you on for the 12/2008 study? REM is mightily suppressed again.

Muffy

SaltLakeJan · Post by **SaltLakeJan** » Tue May 12, 2009 9:45 pm

Hi Muffy,

The first Prescription I filled for Mirapex was July 29, 2006 .25 mg. By September 18, 2006, the dose had been increased to 1 mg.

My prescription list for 12-2008,
Omeprazole---20mg.--(2)
Metormin-----1000mg--(2)
Avalide--------300/12.5-(1)
Vytorin-------5 mg-(10 mg.cut in half
Lunesta------3 mg.(1)
Mirapex------3 mg.(1)
Ritalin--------10 mg.(2)
Lyrica-------150 mg. (2).--I also reduced the amount to (1) 150 mg. after Christmas

Jan

riverdreamer · Post by **riverdreamer** » Wed May 13, 2009 12:06 am

Muffy wrote: With the HR stuck in the low 50s in the 4/2000 study, I think the "autonomic activation" model is going to be a hard-sell.
Muffy

I work in CFIDS research. The "autonomic activation" model is a hard sell, period. Or, I should say, there may be autonomic activation, but it is an effect, not a cause. Most people with serious CFIDS don't do well with their proposed treatment of Cognitive Behavioral Therapy.

kteague · Post by **kteague** » Wed May 13, 2009 1:19 am

Sorry, I'm quite behind on my reading on this thread (much of which is over my head). since I've never had a UPPP, I figured I had little of value to add. But I just read about the Mirapex dosing. FWIW I was at 3 mg for a few years and my sleep was in a horrible state.

I thought the changes in my PLMD meant it was "progressing' when it was really a side effect of the high dosage of Mirapex. my movements became wild flailings that actually intruded into my semi awake time, as well as being present during sleep. I could be in this deeply relaxed state - still aware - and the flailing would happen. At times I was aware enough to count the 3 to 4 seconds between each fling. If I opened my eyes the movements would stop abruptly. However, if I allowed the movement to crest then opened by eyes, I could watch my legs fall. On video, when supine they would sling forcefully upward to a 12:00 position (sometimes pulling my hips off the bed), split, then fall crashing to the bed. The docs were confused, as by definition one must be asleep to experience periodic limb movements of sleep.

It was a long frustrating ordeal, especially since sleep study reports, by definition, report only what happens while technically asleep. The only comments on wake time is.. well, time. I wasn't believed when I told them my legs flung for long periods during the study and they'd look at the report and say, "No they didn't." Maddening! My current doctor took me in a room with the scoring tech and reviewed the video with me for the time I was questioning. Sure enough, during what was technically awake time, my legs were all over the place.

In the discussion of transitions between awake and asleep, I can only presume that this presence had to muddy the waters and make any meaningful evaluation questionable. My current doctor cut my dose of Mirapex to 1.5 mg. I was leery, afraid the movements would worsen. Instead, they improved. No more counting the seconds between movements. No more addictive behaviors. Better sleep for a few months before it became less effective again in letting me sleep. My doc convinced me to wean off the Mirapex and ramp up on Requip. The transition time was rough - little quality sleep for a couple months. I am improved and get significant blocks of decent sleep regularly, though nowhere what is needed. When you've slept only in restless snatches of minutes around the clock for periods of years, a few hours of real sleeps feels like striking gold.

Don't know if any of this Mirapex discussion makes a difference to the discussion in this thread, but thought I'd throw it out. And I can't discuss Mirapex without repeating, never go off this or any similar med abruptly. Did it once maybe 3 years ago (while at the 3 mg dose) and I'm still paying for it to this day.

Kathy

Muffy · Post by **Muffy** » Wed May 13, 2009 5:33 am

Chapter Two

riverdreamer wrote:
Muffy wrote: With the HR stuck in the low 50s in the 4/2000 study, I think the "autonomic activation" model is going to be a hard-sell.
Muffy
I work in CFIDS research. The "autonomic activation" model is a hard sell, period. Or, I should say, there may be autonomic activation, but it is an effect, not a cause. Most people with serious CFIDS don't do well with their proposed treatment of Cognitive Behavioral Therapy.

Strong point.

In addition, all of the confounders would have to be accounted for in SLJ, including the effect of SDB (which can create tons of HRV) and medications, like irbesartan (BP down) and methylphenidate (BP up).

I think a very important distinction has to be made between "sleepiness" and "fatigue". With ESS of "1", SLJ is not "sleepy".

It seems like methylphenidate would create nothing but problems. High blood pressure and insomnia are darn near absolute contraindications for methylphenidate, so I think that was a bad idea from square one. Yes, I see where you stopped that.

The theory behind "autonomic activation" in FBM includes frying your "autonomic". It strikes me that combating "fatigue" with methylphenidate would only compound that. It's like burning both ends of the candle and then setting the middle on fire.

Modafanil has been used not only to combat sleepiness but also fatigue, a thought for the future.

What's your anemia like (lab values)? That'll sure give you "fatigue".

SaltLakeJan wrote: The first Prescription I filled for Mirapex was July 29, 2006 .25 mg. By September 18, 2006, the dose had been increased to 1 mg.

kteague wrote:Don't know if any of this Mirapex discussion makes a difference to the discussion in this thread, but thought I'd throw it out.

Mirapex discussion is very pertinent here. It is not clear to me that SLJ actually has PLMs, although a case could be made for RLS. Taking Mirapex in the morning makes no sense because the effect is gone by the time the RLS or PLMs would appear. Those dosages are hefty (Parkinson's dosages) so I'd at least take a close look to see if they're really necessary (like make sure the anemia and ferritin are fixed, and electrolytes, particularly potassium, are OK)(Muffy thinks low magnesium can be an RLS aggravator, or taking magnesium supplement can be an RLS ameliorator, but that's her).

SaltLakeJan wrote: My prescription list for 12-2008,
Omeprazole---20mg.--(2)
Metormin-----1000mg--(2)
Avalide--------300/12.5-(1)
Vytorin-------5 mg-(10 mg.cut in half
Lunesta------3 mg.(1)
Mirapex------3 mg.(1)
Ritalin--------10 mg.(2)
Lyrica-------150 mg. (2).--I also reduced the amount to (1) 150 mg. after Christmas

Good thing you don't like to take medications.

The Ritalin/Lyrica/Lunesta combo probably all contributed to that REM suppression.

Muffy

-SWS · Post by **-SWS** » Wed May 13, 2009 9:38 am

SaltLakeJan wrote: In spite what seems like never ending fatigue, DH would agree that I have something like a cognitive arousal trait. I enjoy getting involved in a project, canot quit until it's completed. At times, they are so interesting, I use more energy than I have.

That sustained hyper-cognitive trait manifests in at least two of those populations I mentioned above:

While this state of rapt attention is often described as "flow" (Csikszentmihalyi, 1990), it can also be ascribed to "hyperfocus," which is a similar condition that individuals with ADHD frequently experience (Hallowell & Ratey, 1994).

http://www.sengifted.org/articles_couns ... ents.shtml

My understanding is those cognitively arousal-inclined populations tend to additionally manifest frequent non-sustained cognitive arousals as well. Your comment about neighborhood-sourced sensory intrusions while trying to sleep tend to support that latter non-sustained arousability trait as well.

I would also point out that Bev (OutaSync) manifests both CompSAS/CSDB and hyper-sensitive arousability. She scored a strong positive on the HSP screening test and complains of following-day fatigue that is grotesquely disproportionate with her residual AHI. Her daytime pulse oximeter test administered by the doctor manifested atypical variance in HR and SpO2.

ozij · Post by **ozij** » Wed May 13, 2009 9:47 am

-SWS wrote:neighborhood-sourced sensory intrusions while trying to sleep

Now that is vintage -SWS!!!

-SWS · Post by **-SWS** » Wed May 13, 2009 9:52 am

ozij wrote:
-SWS wrote:neighborhood-sourced sensory intrusions while trying to sleep

Now that is vintage -SWS!!!

A goodly number of people would have slept right through that.

Not to worry... Muffy proposed a medicinal solution back on page seven.

Still haven't figured out billing codes...

jnk · Post by **jnk** » Wed May 13, 2009 10:10 am

. . . I thought I would take one consideration off the table. Some place, somewhere, depression was mentioned in connectiion with one of the many conditions that have been hypothized. I am not the goody, goody sickly sweet type, but I have a pleasant dispositon. My on-going health problems have not depressed me. They have been a part of the ups and downs that occur in life. . . .

I can understand taking that off the table, but I would like to react to it, not so much for you, SLJ, but for the lurkers.

It is my understanding that some benefit greatly from treatments generally considered "treatments for depression" even though they do not feel "sad" in the traditional sense. The following article is paticularly about the elderly, and I don't 100% agree with some of the details in it, but it makes the point, for any who might be reading this thread:

http://www.aafp.org/afp/990901ap/820.html

Sorry for the interruption. Now back to our regularly scheduled program . . .

Nice discussion. From where I sit, I'm nodding along with the mainstream approach, with its occasional appropriate nod to the alternative approaches, given the information at hand. Although, personally, I can't sanction XM-214 therapy.

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