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

[SaltLakeJan]

Hello Muffy,
You won't be surprised to learn your questions startled the tech, and caused the Sleep Dr. to ask "Where did you get that information?"

Muffy wrote:
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).

I gave the tech a copy of the chart including "Total number of PLM bursts, & every item listed down to number of PLMs per hour, and a list of the medications for that period. Yes, Yes, Muffy, it was an accurate list.

"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?"

Either the questions startled him, or the fact that a patient was asking the questions was the upsetting part. He asked where did you get that: I told him I visit several on-line sleep sites. He asked which ones - Well, the AASM's site on Sleep Education.com or the National Sleep Foundation. or NIH - lots of good information from all of those.

He grumbled that everyone was attempting to be a Sleep Professional, and the Doctor would answer those questions for me. So, I didn't get to ask if they were a bunch of liars.

SaltLakeJan wrote:
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.

Muffy, don't you give points for answering within 12 hours? I couldn't find it using his name - He isn't that famous. I was looking up RLS information and found many, many sites extolling his miraculous discovery.

I am sending the Comprehensive Polysomnogrraphy Report, But I think I didn't get it all, What am I missing? I'm too tired to send more. Much appreciation for all the help you gave me. Thanks for the questions, . Jan

[SaltLakeJan]

[SaltLakeJan]

[SaltLakeJan]

[Muffy]

I couldn't find it using his name - He isn't that famous. I was looking up RLS information and found many, many sites extolling his miraculous discovery.

A "housekeeping" question, if you will...

You do know that when a comment appears in blue underscore, like below, that it's a "clickable link" that will take you to a new window with another article, website, etc?

Pregabalin Shows Promise in Restless Legs Syndrome

Muffy

[ozij]

And

I couldn't find it using his name - He isn't that famous. I was looking up RLS information and found many, many sites extolling his miraculous discovery.

A "housekeeping" question, if you will...

You do know that when a comment appears in blue underscore, like below, that it's a "clickable link" that will take you to a new window with another article, website, etc?

Pregabalin Shows Promise in Restless Legs Syndrome

Muffy

And anyone can register to that site for free (no only Muffy, and all her other guest... er, personalitlies...)
O.

[Muffy]

Good point o., another assumption I assumed.

Muffy

[SaltLakeJan]

Thanks to everyone who has written PM's encouraging me. I appreciate them and hopefully will get them all answered when I get more time and energy.

Thank you all for the suggestions, and good thoughts for me. I appreciate knowing that many of the close to 10,000 visits to this thread have been to study SWS's & Muffy's comments. I read their posts in OuttaSinc and Bleeping Beauty's threads long before I knew I would receive help from them.

Cpaptalk.com's forum members live in many different areas of the world, speak different languages, but all are united in their willing help and support of others with sleep apnea. We all are fortunate to have discovered Cpaptalk.com.

Thanks again,

Jan

[SaltLakeJan]

Muffy, (a pre-lark), SWS, (I suspect he is a night-owl)

The more I think about the appointment yesterday, the more confused I become. In the Poly. report, page 2, Respiratory Measurements: Dr F. wrote "There was no particular advantage of increasing CPAP from 8.0 to 10.0 cm H2O. I saw the tech first, and told him that I had briefly reduced the pressure on the F&P to 8.0, and it was harder to breathe than it was at higher pressure. He agreed that "Of course it would be easier at higher pressure". I asked, "Where do you think my pressure should be?" He answered, "Ask the Doc." I did tell Dr F. that at home it was my experience that I could breathe easier at 10.0 pressure. Because he told me not to increase pressure above 10.0, I hadn't, but what did he think now. In his answer he showed me a chart that was created from data in my F&P unit. He said he could tell I was at the correct pressure by the Chart which he said illustrated my mask fit and machine at 100% for every night but one. The 100% represented no leak from mask, my mouth, or machine.

Muffy, is that what the chart represented?
Further, he told me it was unusual to have virtually all 100% figures. He frequently saw figures in the 30% and 40%. I have frequently thought my mask was leaking. I have taken it off and adjusted the fit. It was either that chart or another one, that showed small breaks in use. I replied that I thought he restricted increased pressure because of central apnea in my 4-2000 Sleep Study. He brushed me off. Don was with me, he asked, "Can she increase pressure?" Dr F. replied, "She is at the appropiate pressure." I think it was B.B. who said she felt like a "shroom" kept in the dark & covered with *^%##. I had the same feeling. Is there a conspiracy among sleep doctors not to be open with their patients?

Next I asked one of Muffy's loaded questions:

,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?"

I explained his response or to be accurate, lack of response in my post to SWS. While, he was tap-dancing around the question, I asked, Is there a possibility, I do not have OSA?, or need to use CPAP? That's where he asked, "Where do you get this information?" He said you definitely have
Sleep Apnea which is adequately being treated by the F&P unit and it's type of humidification.

I explained my symptoms to him, and that I had originally believed the diagnosis of Cpap. But prior starting CPAP 1-16-2009, I had never been able to answer one of the Epworth Questions in the affirmative. After I began Cpap, I slept poorly, & I was falling asleep everytime I sat down. And if I was getting adequate therapy, why hadn' t My excessive sleepiness improved? He, of course answered that it was because of PLMs. But I know my back's symptoms. It has become more complex in the last 6 weeks, because I have been working in the garden, and lifted things I shouldn't have. Although I found a Sleep site that disagreed with this, I believe there is a
correlation between my excessive PLMs and the status of my back.

I am so fatigued, I can't think, and I will close for now. Muffy and SWS, please tell me if I am
wrong in the feelings that I do not have sleep apnea.?

Jan,






Bot machines.

[ozij]

Jan,
If I remember correctly, you had terrible desaturations in your pre-cpap studies.
Whatever is going on now -- both your AHI and your oxgenatzion are reasonable, furthermore you report feeling better at 10 than at 8. The report notes that you were supine for the last part of the night, at a pressure of 10.

It seem to me that all these do indicate you have an SDB problem that needs Positive Air Pressure treatment, and is adequatel treated by PAP by at this point. However, and that's how I understand Muffy and your doctor, that is not the only problem with your sleep, and therefore it is not sufficient to make your sleep refereshing. Necessary, but not sufficient.

O.

[kteague]

Jan,

I think I've weighed in on this before, but want to add a comment on your latest discussion.

I didn't see any mention of a plan to address those limb movements. I think you've said that you take a portion of the prescribed dose of Mirapex. If that partial dose isn't working, do you plan to increase it?

Your experience of increased tiredness after starting cpap treatment is no surprise to me. Those with PLMS/PLMD and untreated OSA have likely had many of their limb movements preempted by OSA events and/or arousals. Once the OSA is effectively treated, the limb movements can more fully express themselves, and this can result in increased sleep disruptions and tiredness. By the way, aside from the broken superficial sleep, I can tell how well my limb movements are controlled by my pain levels. For several weeks now the joint and muscle pain in my legs, hips, and back has been debilitating, after a several month period of mobility with only my normal pain. I can't help but wonder how many of your pain problems stem from your limb movements.

Getting your cpap treatment to be effective was and is priority due to the potential health consequences. If that is happening, now you can give more attention to getting the limb movements under control.

Kathy

[Muffy]

In the Poly. report, page 2, Respiratory Measurements: Dr F. wrote "There was no particular advantage of increasing CPAP from 8.0 to 10.0 cm H2O.

Well, my question would have been, "If there was only AHI of 1.7 at 8.0 cmH2O, why didn't you try turning it down and see what happens?"

I saw the tech first, and told him that I had briefly reduced the pressure on the F&P to 8.0, and it was harder to breathe than it was at higher pressure. He agreed that "Of course it would be easier at higher pressure".

I think it's easier to breathe at lower pressures (although I only breathe through one of them things for about 10 minutes every 6 months). But I think a blanket statement like

"Of course it would be easier at higher pressure".

is incorrect, it's patient preference, but in response to your question coming up ("Do I have sleep apnea"), I think looking at the events at the lower pressures would have provided important information.

I did tell Dr F. that at home it was my experience that I could breathe easier at 10.0 pressure. Because he told me not to increase pressure above 10.0, I hadn't, but what did he think now. In his answer he showed me a chart that was created from data in my F&P unit. He said he could tell I was at the correct pressure by the Chart which he said illustrated my mask fit and machine at 100% for every night but one. The 100% represented no leak from mask, my mouth, or machine.

Muffy, is that what the chart represented?

Further, he told me it was unusual to have virtually all 100% figures. He frequently saw figures in the 30% and 40%. I have frequently thought my mask was leaking. I have taken it off and adjusted the fit. It was either that chart or another one, that showed small breaks in use. I replied that I thought he restricted increased pressure because of central apnea in my 4-2000 Sleep Study. He brushed me off. Don was with me, he asked, "Can she increase pressure?" Dr F. replied, "She is at the appropiate pressure." I think it was B.B. who said she felt like a "shroom" kept in the dark & covered with *^%##. I had the same feeling. Is there a conspiracy among sleep doctors not to be open with their patients?

OK, if the question in there is "Am I at the correct pressure?", then the answer is not. In there, that is.

Jan, click here on this link which will give you a sample of F&P reports

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.

Next I asked one of Muffy's loaded questions:

That one always gets 'em.

He said you definitely have Sleep Apnea which is adequately being treated by the F&P unit and it's type of humidification.

If one were to look only at the current sleep report and information provided by the F&P download, I do not see how anyone could say you definitely have sleep apnea.

please tell me if I am wrong in the feelings that I do not have sleep apnea.?

However, if you go back at look at your diagnostic NPSG from 3/2000, it shows that you do have sleep apnea:



Now, we could debate that area where PLMs and hypopneas co-exist (technically, you usually can't have that, or at least, careful scrutiny is needed to insure that that is, in fact, what is actually happening) but the middle seems to show apneas with distinct desaturations.

That block of increased heart rate looks odd in that there's like a 10 BPM unexplainable boost out of nowhere, but I don't know what, if anything, that means.

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

Watchoo mean, "big"?

Muffy

[Muffy]

However, and that's how I understand Muffy and your doctor, that is not the only problem with your sleep, and therefore it is not sufficient to make your sleep refereshing. Necessary, but not sufficient.

Right. With 77% sleep efficiency and 21 awakenings, you need to keep working the sleep hygiene. Also, all those arousals (AI of 55.1 at 8.0 cmH2O, 27.4 at 10.0 cmH2O) are bitter. Arousal indices are interpreted like apnea-hypopnea indices in re: severity , so even 27.4 are a ton. I mean, if you were to look at the arousal chart as you would a respiratory chart:



you'd say, "Whoa, that's ugly."

Muffy

[-SWS]

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.

Jan, if it were me I would push for that follow-up study. How else will the doctor know whether your PLM's have been adequately addressed? Additionally, once those sleep-disruptive PLM's have been removed, yet other previously-eclipsed problems with sleep architecture may emerge during that follow-up PSG.

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)

Muffy, we're extremely lucky to have you here helping us with our PSG results. My heartfelt gratitude...

Kathy, I'm very glad to see you weighing in here with your first-hand PLMD insight as well.

Jan, I'm still here pitching for you all the way. This is the part of the thread where I hope Muffy's comments as a sleep professional come through loud and clear. That means I would prefer not to dilute this important part of your thread with too many of my own comments.

[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...

Muffy