CompSA, Hypoventilation, PLMs, Bradycardia and Hypotension?

-SWS wrote:

echo wrote:Yay

Yay
I echo echo...

Good work -SWS. Much appreciated. Thank you.

I'm just glad that ball managed to thread through the trees and hook onto the green. Good shot!

And good luck with D-day results as well...

We'll continue analyzing at our end.

-SWS wrote:And good luck with D-day results as well...

We'll continue analyzing at our end.

Thank you kindly and much appreciated. My Sleep Dr is a nice guy who seems happy to engage in technical chit-chat. I am so grateful for how well prepared I am for this visit thanks to this thread, probably puts me months/years ahead in terms of understanding my sleep condition.

Wow, I was gone a few days and everyone has changed their Avatar. I'm pretty lost in this thread by now (not that I was able to understand most of it before). Some of your concerns will be resolved very easily with blood tests (e.g., thyroid, ferritin, folate, and other PLMS-related labs), so your list of possible disorders will quickly diminish. Good luck with your doctor's appointment.

SleepingUgly wrote:Some of your concerns will be resolved very easily with blood tests (e.g., thyroid, ferritin, folate, and other PLMS-related labs), so your list of possible disorders will quickly diminish. Good luck with your doctor's appointment.

Hi SU, Good point and thank you. Getting just a bit nervous now, only 2 hrs to go.

blizzardboy wrote:

echo wrote:Hope you get it all sorted out.

Hi echo, Well maybe a step closer to Nirvana:

http://users.adam.com.au/sixsome/ASV/0410/042910/

Last night's data with Epap increased to 10 from 8, as indicated by -SWS and DSM. Obvious improvement in respiration stability. I also wrapped some tape around the nose pieces of the Mirage Liberty in attempt to stop them popping out of my nares. Seems to have worked given the leak rate data.

D-day.

BB

Just looked at your data above & yes the AHI has come down but what I see in the data is how often & regularly the SV peaks at max pressure. The machine is spending a lot of time keeping your volume up. If you can bring that matter up with your doc (not too late ?) then do so.

It may be that it is evidence of how well the machine is doing its job, but it also may be evidence of a low/lack of respiratory drive as discussed by the experts here in the thread & for the myriad of reasons put forward. Muffy certainly has offered a good selection of potentialities. SWS certainly has highlighted important observational issues.

I guess I am saying, "how did you ever get by without an SV ?" then again, I guess that the extent of the pressure support shown in your data is evidence that you have a good reason to look deeper & get what ever advice you can & you seem to be doing that very well.

Good luck

DSM

dsm wrote:Just looked at your data above & yes the AHI has come down but what I see in the data is how often & regularly the SV peaks at max pressure. The machine is spending a lot of time keeping your volume up. If you can bring that matter up with your doc (not too late ?) then do so.

It may be that it is evidence of how well the machine is doing its job, but it also may be evidence of a low/lack of respiratory drive as discussed by the experts here in the thread & for the myriad of reasons put forward. Muffy certainly has offered a good selection of potentialities. SWS certainly has highlighted important observational issues.

I guess I am saying, "how did you ever get by without an SV ?" then again, I guess that the extent of the pressure support shown in your data is evidence that you have a good reason to look deeper & get what ever advice you can & you seem to be doing that very well.

Good luck

DSM

Cheers DSM. And, no not too late. I am just packing up to head off to the doc now. Thank you for your comments, I really appreciate you taking the time to write.

Hmmm.

No word from bb this morning.

Evening.

Tomorrow.

Whatever time it is over there.

I knew he should have took the Dillon with him.

Muffy

Muffy wrote:I knew he should have took the Dillon with him.

Good evening Muffy, hope you are having a good morning. Are you sitting in a sleep lab watching people sleep right now?

So a report is in order. i have added comments in bold font.
Sleep Disordered Breathing Issues:

• Unstable breathing when asleep on ASV
  When I showed him my Tidal Volume plots he commented that "Instability begets instability". Incremental titration changes required to manage instabilities. Hypersensitivity to CO2 levels contributing to oscillation between hypoventilation and hyperventilation. Approved of increased Epap and gradual increases to PS_min.
• Hyper- or hypocapnia? ABG, PFT and/or electrolytes
  Didn't engage on this matter. Dr seemed convinced my issue was autonomic not mechanical. He felt my lung function was not an issue, as supported by above-average tidal volumes during hyperventilation on ASV.
• Given location of centrals, truly CompSAS, underlying CSA or plain OSA (centrals are benign)?
  Believed I had underlying CSA with autonomic/neurological control issues. Also believed this is was the explanation for hypotension, bradycardia, hypoventilation, etc
• Origin of atypical treatment response: Neurological (meningitis as a 7-month old); Pulmonary (hypoventilation on D/L); Cardiac (not likely)
  Neurological with speculative possibility of connection to meningitis. Difficult/unable to determine this.

PLMs:

• Cause - fluoxetine, electrolyte imbalance, "pure" PLMs
  Said that we know little about the cause of PLMs. Possible aggravation by fluoxetine.
• Should they be treated and how?
  Fluoxetine to be maintained for now. Wait (up to 6 months) to fine tune Adapt SV to stabilise my breathing before considering weaning off fluoxetine. Will redress PLM treatment in the future if needed.

Sleep architecture:

• Sleep-maintenance insomnia
  I showed him my lovely sleep diary and efforts to maintain good sleep hygiene but he hardly blinked. Failure to engage. Again, think he sees my main issue as being associated with faulty autonomic control.
• Fluoxetine-induced?
  I didn't ask this directly.
• Long-acting sleep aid (e.g. eszopiclone)
  Concerned about affect on autonomic system. Seemed keen to give breathing stabilisation with ASV a good run first.

Underlying medical disorder(s) e.g., hypothyroidism, FBM:

• Touch and hearing sensitivity
  I forgot to mention this.
• Body aches
  Felt that my nerves could be affected by changing blood pH with no mechanical joint problem. He made a comparison with the pain of shingles, saying that some sufferers wish they could cut the limb off. Wondered if my nerves might be hypersensitive. I told him the pain was so bad at times my body was going into shock.
• Bradycardia
  Autonomic control problem.
• Hypoventilation
  Autonomic control problem.
• Low body temperature
  Autonomic control problem.
• Hypotension
  Autonomic control problem. Didn't feel I had hypothyroidism because the long half-lifes of thyroid activating hormones would result in low blood pressure over the whole day, not just dips at night. Said that the hypotensive episodes around 0400-0600 would be associated with REM's low brain activity levels.

Some other comments:

• In spite of me asking several times, he did not think it necessary to have either my heart or lungs tested.
• Agreed that a set of bloods wouldn't hurt, suggesting: thyroid function; general biochem; haemoglobin; not anymore as it could confuse the issue.
• Thought it futile to try and measure CO2 day and night due to the inaccuracy of EtCO2 measured through a nasal cannula. Only trustworthy measurement would be via intravenous cannula, as in intensive care.
• Not concerned about applying ASV with my systolic dropping to 80 as I don't have a highly unstable heart.
• Commented that my case was highly unusual because most people on ASV are presenting with well-developed heart/lung conditions and, as such, my use of ASV was fairly leading edge.
• Said that it was good that I was informed and motivated as this would ensure that my therapy was well tuned and appropriate.
• When I had my nose operated on at the end of last year the anaesthetist commented that I had a strong heart.
• When I put the Dillon on the table he told me that the appointment was gratis and wrote down his personal mobile number in case I "needed anything."

The preparation you people helped me with was fantastic. I felt confident of the questions I was asking. Thanks very much to everyone who has contributed to this thread to date.

What a fantastic start IMHO toward understanding and addressing your presently outstanding sleep/health issues, blizzardboy! I would put that down as a highly productive doctor's visit... D-day it was!

Congratulations!!!



to be continued...

blizzardboy wrote:Said that the hypotensive episodes around 0400-0600 would be associated with REM's low brain activity levels.

Well, lemme get that one first because it's wrong on two counts- the brain is very active in REM (interesting but not important here) and peripheral vasoconstriction causes an increase in systolic blood pressure in REM (and phasic REM > tonic REM).

Muffy

blizzardboy wrote:Pap-cap , eh? (busily Googles for info...YouTube video digested...web pages consumed) Looks good. Does your Papcap lift your jaw more up toward your nose rather that back toward your ears? That loop on top would be great for the Liberty - I used to tape my hose to the head gear to reduce tugging on the mouth piece. Hang on...CPAP.com want USD77 for shipping to Oz (BB gets out sewing machine and starts trying to make Papcap...)

Papcap , definitely go for the papcap! Get it directly from our own forum's sleepguy : http://www.pur-sleep.com/content/?id=44 (he can probably swing you a good deal on shipment since he uses normal postal service).

I personally have only tried 1 brand of chinstrap, and the papcap. The chinstrap was hell, as you say it pushed my jaw even further back than it already is (receding on its own). The papcap definitely didn't do that, it really pulled the jaw UP, not BACK and up. Probably something having to do with the fact that you can place the strap part of the papcap directly vertical from the jaw - nose - top of your head. With the chinstrap, I had to place it at an angle so it wouldn't slide off, and the pressure was way too strong too, so it sort of choked me too (receding jaw and excess weight so not much space there under my chin for a thick strap)... Although if you look at the pictures, the positioning of the chinstrap and the papcap seem to be the same, believe me it did NOT feel the same![/quote]

blizzardboy wrote:Yes, I changed my Avatar. That's me up the top of a 50-m tower, hanging back on a lanyard and snapping myself with a fish-eye lens. One of my fave fotos.

That's a really neat pic! it looks like you're hanging off the camera lens drifting above earth (or the moon).

BB

Great report
Nice to have such an engaged doc

Cheers

DSM

echo wrote:Papcap , definitely go for the papcap! Get it directly from our own forum's sleepguy : http://www.pur-sleep.com/content/?id=44 (he can probably swing you a good deal on shipment since he uses normal postal service).

Hi echo, Comms underway. Thank you.

echo wrote:looks like you're hanging off the camera lens drifting above...moon

Might as well have been...

-SWS wrote:What a fantastic start IMHO toward understanding and addressing your presently outstanding sleep/health issues, blizzardboy! I would put that down as a highly productive doctor's visit... D-day it was!

Congratulations!!!



to be continued...

Hi -SWS, Thank you. Last night I increased PS_min to 4 & PS_max to 9 leaving Epap=10 in an attempt to increase ventilation. Interestingly I had my fastest hyperventilation stage to date. I peaked out at about 35 breathes/min after about 1-2 of sleep and my breathing looked less stable that last night. I was surprised to see such a shift with only a 1 cmH20 increase of the PS range. I'll post up the graphs soon.

Cheers,