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

[SaltLakeJan]

[SaltLakeJan]

[SaltLakeJan]

Bottom line:
Mean Sa02 min during Sleep 88.2%

[SaltLakeJan]

[SaltLakeJan]

[SaltLakeJan]

[SaltLakeJan]

[-SWS]

SWS,

This post is from a confused Jan. Today I got a phone call reminding me of my Sleep Study Review 7-9-2009. As I spoke with the Tech, I asked if I could get a copy of the Sleep Study Documents before my appointment. She told me If I wanted the basic graphs, I could pick them up from their Lab. She didn't have a copy of the Final Report or other documents. The Doctor would give them to me Thursday.

I wasn't goin' to pass on the graphs and drove to the address she gave me. I think it is the same building where the 2001 sleep study was held. I asked her if my current sleep study was connected to the 2001 study. She had never heard of the doctor.

I glanced at the pages as I walked back to my car - - . Could this be my sleep study, with 846 Total Number of Leg Movements? I recalled briefly awaking several times during the study - I thought I dropped back to sleep immediately, and have no recollection of 846 leg movements.

I have a high leak rate, and the day of the study I picked-up a new chinstrap. It was so tight I thought I had a vise on my head, I tried to loosen it before I went to sleep, but it was an all-or-nothing-chinstrap. The next A.HM. the Tech said it had loosened in the early morning hours, and she had reattached it - Told her it must have been another patient, I awaken if a cricket sneezes. My jaw was sore for a week, and I never used that instrument of torture again.

I am looking for the last graph from my Resumed Machine before I switched it for FA & HP. If I kept it, I will send a to to you for comparision.

My sleep habits have continued to improve. I am sleeping better, and longer than I ever have. I did compromise on T.V. I allow my self a half-hour when I get in bed - then the T.V.timer shuts it off. I still awaken during the night, but I choose to go back to sleep - and it works. I awaken about the time I used to try to get to sleep. I either walk about 6 a.m. or wait for the first rays of sunlight to take pictures of my Daylilies. I still have an occasional night when night when I can't get to sleep , but I have been exhausted taking care of grandkids - and those are rare nights. I am currently taking 1/4 of a 1.5 mg Mirapex, and 75 Mg of Lyrica. I wasn't taking either on my 2000 sleep tests. I have enclosed the graphs - is there anything I should ask the Doctor on the 9th. I guess this is Jan signing this post.

Hello, Jan. I see they tried two pressures during your June 9th NPSG: 8cm and 10cm. And the 10cm pressure seems to have yielded better sleep.

Unfortunately your Mirapex dosage doesn't seem to be controlling your Periodic Leg Movements (PLMs) very well. At least arousals were not associated with the majority of those PLMs. But there were still plenty of PLM associated arousals and even awakenings. So I think you and your doctor will need to revise your PLM treatment. Aside from those frequent arousals, you spent 88 minutes of your 400 sleep-session minutes in an awakened state. That doesn't count your awake time right before falling asleep. Your Sleep Disrodered Breathing (SDB) seems well enough controlled at 10 cm. But PLMs and sleep architecture are problematic. Hopefully sleep architecture will improve once you and your doctor manage to better control your PLMs.

Much more important than what I think about your sleep study Jan, is what Muffy (our sharp sleep professional) thinks about it. So, I also hope to hear comments and suggestions from our "Big PSG Gun", Muffmeister...

[SaltLakeJan]

[quote="-SWS"]Much more important than what I think about your sleep study Jan, is what Muffy (our sharp sleep professional) thinks about it. So, I also hope to hear comments and suggestions from our "Big PSG Gun", Muffmeister...[quote="SaltLakeJan"]SWS,

I am in a state of disbelief - how could I have 845 Leg Movements, and not recall awakening with one of them??


I hope to hear from Muffy & Muffmeister, too.
Jan

[-SWS]

Well, the good news is that if anyone asks if you're an avid dancer, you can truthfully answer: "Yup! Even in my sleep!"

Fortunately, the vast majority of those PLM's didn't result in awakenings. Ironically, that may have to do with how much "pressure to sleep" all those arousal-associated PLM's impose when they devastate sleep architecture night after night. When we run deprived of restorative sleep, for virtually any reason, we can naturally maintain a greater "pressure" or "drive" to fall right back asleep after disturbance-based awakenings---and even stave off some awakenings in light of repetitive stimuli (sleep-disruptive PLMs in this case). And our cognitive bearings can essentially lose track of just how often we are awakened. And unlike awakenings, we are not consciously aware of lesser sleep arousals.

Fortunately, fixing that PLM problem should help you sleep better and feel more refreshed by day.

[Muffy]

I am in a state of disbelief - how could I have 845 Leg Movements, and not recall awakening with one of them??

I am currently taking 1/4 of a 1.5 mg Mirapex, and 75 Mg of Lyrica.

When a drug is found to help PLMs, it will usually help RLS, and vice-versa, so the first thing you need to do is call up Diego Garcia-Borreguero and ask "Are you out of your &#%!ing mind?" and hang up.

Pregabalin Shows Promise in Restless Legs Syndrome

How did you arrive at the dose of "1/4 of a 1.5 mg Mirapex"?

Next, you need to make a complete summary of all PLM data for tomorrow. List all NPSG, PLM data and the complete list of medications.

All.

Complete.

Something like this:



Also, ask this question:

"Boy, y'know, I heard somewhere that PLMs could result in changes in breathing and/or changes in the PSG signals that could could make relatively normal breathing look like OSA, or perhaps UARS. How do I know that that hasn't been a significant confounding factor all along?"

I would say that there is a 50-50 shot that the reply will necessitate the next question:

"How do I know that they aren't simply a bunch of &#%!ing liars?"

Make chart.

All.

Complete.

Muffy

[SaltLakeJan]

Muffy - Many thanks for your infor. Details on Diego Garcia Borreguero are hiding from my inquiring mind. Is he the top-dog in movement activities in Spain? Or is his heavy metal band starting a new dance craze? If he has anything to do with the constant Cha-Cha-Cha in my right leg, I would like to tell him Happy Hour is ffffing over as far as I am concerned.

Thanks to your inquiring mind, I can wow the Tech's and Doctor with my chart & PLM meds. Is Effexor or Neurontin ever used used to slow down PLM's?

And . . . does PLM/RLS effect both legs? Since my mind is trying to keep the knowledge of PLM's away from my conscious brain, it is hard to know if both legs have been busy, busy, busy, all night.
However, my right leg is experiencing more fatigue than the left. I thought since my active grandkids have been having week-long sleep overs, that I was taking two steps with my right leg to one with my left. The result is that my right leg feels 10 light years older than my left. I couldn't recall during PSG if both legs were monitered for movement.

I can't help but wonder if buying the chinstrap made from Kriptonite, changed my diagnosis from OSA, SDB, UARS, etc to the World Record Holder for number of PLM'S in a PSG. Also, did binding my jaw in a vice-like grip (eliminating both mask and lip leaks) caused my leg to move more than it usually would?

Muffy, your laconic replies give me more information than an long essay from a doctor. Thanks much.
Jan

[SaltLakeJan]

Hey Muffy:

Of course Dr Garcia-Borreguero's amazing revelation regarding Lyrica was funded by Pfizer.
Jan

[Muffy]

Of course Dr Garcia-Borreguero's amazing revelation regarding Lyrica was funded by Pfizer.

Good thing I didn't ask you to pass me the snake-bite kit.

Is Effexor or Neurontin ever used used to slow down PLM's?

One does not "slow them down" per se, one either reduces the total or their severity. But Effexor should make them worse, Neurontin and Clonazapam (and theoretically Lyrica) should make them better.

Which underscores why

the complete list of medications.

BTW, you done yet? Make sure you have the values for PLMs correct, too (as in differentiating totals per night vs number per hour, or indices).

does PLM/RLS effect both legs?

Sure can.

The result is that my right leg feels 10 light years older than my left.

Well, when did you get your right leg?

I couldn't recall during PSG if both legs were monitered for movement.

I'm sure they were, but I don't think many people go to that degree of detail in their reports.

I can't help but wonder if buying the chinstrap made from Kriptonite, changed my diagnosis from OSA, SDB, UARS, etc to the World Record Holder for number of PLM'S in a PSG.

Why?

Also, did binding my jaw in a vice-like grip (eliminating both mask and lip leaks) caused my leg to move more than it usually would?

[short answer] Absolutely not.
[long answer] Absolutely could. PLMs can be suddenly "revealed" by correcting SDB and/or improving sleep continuity. Or their prior existence in the NPSGs could have missed by the scorer.

Ms. Skeptical (don't forget the Multiple Personality Disorder thing) also points out that the 846 PLMs could have been overscored as well (given that the sleep architecture is still a tad askew)(askew meaning "sucky").

Muffy

[SaltLakeJan]

Hello SWS,
It was a relief to get your post regarding the PLMs. Your comments were calm - while my first reaction was, "Oh no, will I ever get restful sleep again? I have to fuss and consider if my fatigue is worse now than when I was at the worst part of my Fibro, or when I was pregnant and Don & I were hospitalized with Hepatitis. After torturing myself for about 1 minute, the thought comes to me, that I recovered from those situations, & I will from this one too. You and Muffy have been a never-ending source of information on what I have needed to know, at each phase of this journey.

Unfortunately your Mirapex dosage doesn't seem to be controlling your Periodic Leg Movements (PLMs) very well.

Thanks for the understatement - it helped me get my head on straight.

"

So I think you and your doctor will need to revise your PLM treatment.

Today, Dr F. agreed with you. I had picked up Magnesium when you mentioned it, that was one of the first things he wanted me to include. He didn't think much of me tinkering with the Mirapex dose. He wants me to take 1, 1.5 Mirapex. Go back to 150 mg Lyrica. He spent the first 20 minutes explaining why I should take Nuvigil - DH was with me, later he said if Nuvigil will keep you up for 15 hours - will you ever go to sleep at night? Good question. What do you think ?

When I saw Dr. F. in May, I told him I had spinal stenosis that began in my late 20's, plus 3 other back problems that were painful. After seeing my Sleep Study, he called my back Dr. regarding my PLMs, & my spine. Dr F. thinks my back is envolved with the PLM's and I am to see the back Dr again. He gave me a prescription for Ultram, to take at bedtime for two weeks. (I haven't decided about this yet.) He had blood work drawn for Ferritin levels , anemia, and other tests. He is considering an additional sleep test in six months.

I asked him some of Muffy's penetrating questions:

Ms. Skeptical (don't forget the Multiple Personality Disorder thing) also points out that the 846 PLMs could have been overscored as well (given that the sleep architecture is still a tad askew)(askew meaning "sucky").

Dr F. agreed, and suggested I not invest a huge amount of energy in the total number, at the present time.

There is more, but I was there for several hours, and I am tired. Thanks for all you have done for me. Jan