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Waiting on CPAP/Looking for adivice + hope
#1
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Waiting on CPAP/Looking for adivice + hope
Hey folks. 34 year old male year. 5,11 and 160 lbs. I had a sleep study last year. I was diagnosed with Narcolepsy/Hypersomnia. I thought, surely other than some other issues at the time that were devastating my life, that that would explain my tiredness. Before last year I was (and technically still am) a highly functioning person. Good jobs, vacations, touring with a band, being a teacher. The whole 9 yards. However over the last year the fatigue got much much worse. Almost crippling to me. A zombie. So a year went by and I basically ignored treatment for it other than Provigil + Nuvigil. But then it occurred to me. I wake up gasping. Sweating in the bed. My chest feels tight, sometimes my BP is high, and I feel anxious and foggy. I feel like I could pass out anytime and anywhere. Again, I thought maybe the Narcolepsy could explain ALL of that. I went back to the Sleep Specialist for the drugs I mentioned above, and were going to think about moving to Xyrem. To do that, I had to do a sleep apnea test. Well wouldn't you know. AHI of 24. 

My study results:
  • AHI 24
  • Test Duration 9:34
  • TST: 4:01
  • ODI (≥3%): 21events per hour
  • ODI (≥ 4%): 8 events per hour
  • T90: 0% 
  • Minimum SpO2: 89% 
  • Maximum SpO2: 100%
  • pAHI (3%rule): 24
  • pAHI (4%rule) 6
  • Impression: Moderate Sleep Apnea

I wait now, for my Resmed Airsense 11. Initially when I contacted the third party (not the sleep specialist) that provides it (and approved it with my insurance) they said something crazy like 6 months. But then I got a call back that said it would be less than 2 months, as its coming from a local distributor and not national. In any case, why I am posting here is this: There is obviously no way for me, or any of you, to know whether my fatigue and brain fog is caused by my Narcolepsy, my Sleep Apnea or both. Is it reasonable to think that I will get some relief from the CPAP? In the future I suppose I could combine the Xyrem and CPAP. But I would LOVE if I just did my Mirtazipine at night (for anxiety and depression, and puts me out) and the CPAP, and then could manage with Provigil/Nuvigil as needed. Anyway, I know I can't borrow worries from the future.  

In this forum's experience are some of my symptoms (below) things I could find relief from?
  • Moderate high BP at times (normal in morning, sometimes during the day too)
  • Chest tightness
  • Palpitations (I have had a holter for this many times, and all comes back as less than 1% PVCS, and not harfmul. I work with a cardiologist. He thinks the CPAP could help)
  • Fatigue
  • Brain fog
  • Malaise 
I am so anxious to get my CPAP. And I am so anxious to learn how to use it correctly and effectively, so I can get myself healthier first, and hopefully feeling great second. 

Thank you all!

-Brad Sleep-well
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#2
RE: Waiting on CPAP/Looking for adivice + hope
Are you seeing a general practitioner or specialists?

Your doctor could write "stat" on the prescription to jump the waiting list for a CPAP, or you could ask for a more responsive vendor.

Have you considered an inexpensive wearable recording pulse oximeter to keep track of your own pulse and oxygen levels at night? Check with vendor #19 from the supplier's list in the black menu ribbon above for pulse-ox advice. Ask for Kevin Cooper.

Have you asked about supplemental oxygen at night?

Was it a 24-hr Holter study or the multi-week Zio-patch?
Did they do a full cardio workup, including a stress echocardiogram and a nuclear heart study? (My PVCs increased to the point where I now have an implanted defibrillator to guard against ventricular tachycardia.)

Have you thought about checking with a pharmacologist to review your drugs, their dosages, timing, and side effects? I wonder if the side effects of your Mirtazapine might be extending into the daytime?

>> Commonly reported side effects of mirtazapine include: severe sedation, constipation, drowsiness, increased serum cholesterol, weight gain, fatigue, insomnia, increased appetite, xerostomia, and decreased appetite. Other side effects include: dizziness, increased serum triglycerides, tremor, dyspepsia, hot flash, palpitations, vertigo, abnormal dreams, bitter taste, decreased libido, and diaphoresis <<

No disrespect, but have you considered a professional mental health consultation to learn about cognitive behavioral therapy and/or meditation to combat stress reactions?

There is always hope. Unfortunately, it may be a painful learning curb.

I wish you the best,

Steve
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#3
RE: Waiting on CPAP/Looking for adivice + hope
(07-12-2022, 01:01 AM)TV Ben srlevine1 Wrote: Are you seeing a general practitioner or specialists?

Your doctor could write "stat" on the prescription to jump the waiting list for a CPAP, or you could ask for a more responsive vendor.

Have you considered an inexpensive wearable recording pulse oximeter to keep track of your own pulse and oxygen levels at night? Check with vendor #19 from the supplier's list in the black menu ribbon above for pulse-ox advice. Ask for Kevin Cooper.

Have you asked about supplemental oxygen at night?

Was it a 24-hr Holter study or the multi-week Zio-patch?
Did they do a full cardio workup, including a stress echocardiogram and a nuclear heart study? (My PVCs increased to the point where I now have an implanted defibrillator to guard against ventricular tachycardia.)

Have you thought about checking with a pharmacologist to review your drugs, their dosages, timing, and side effects? I wonder if the side effects of your Mirtazapine might be extending into the daytime?

>> Commonly reported side effects of mirtazapine include: severe sedation, constipation, drowsiness, increased serum cholesterol, weight gain, fatigue, insomnia, increased appetite, xerostomia, and decreased appetite. Other side effects include: dizziness, increased serum triglycerides, tremor, dyspepsia, hot flash, palpitations, vertigo, abnormal dreams, bitter taste, decreased libido, and diaphoresis <<

No disrespect, but have you considered a professional mental health consultation to learn about cognitive behavioral therapy and/or meditation to combat stress reactions?

There is always hope. Unfortunately, it may be a painful learning curb.

I wish you the best,

Steve

Hey Steve!

1. Yes I’m working with a mental health practitioner.
2. Yes I’ve had multiple Zio patches. They all come back as less then 1% PVCs. I’ve been told countless times they are harmless to me.
3. The mirtazipine is fairly new over the last year. I have experimented being off of it for a while. The Fatigue wasn’t better off of it. 
4. I am seeing a Pulmomary and Sleep specialist.

Thank you for the advice.


I guess the big thing I’m looking for is hope that I can feel better with my energy.
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#4
RE: Waiting on CPAP/Looking for adivice + hope
Looks like you have your bases covered. I still would consider an inexpensive wearable recording pulse oximeter to keep track of your own pulse and oxygen levels at night?
I would also check your thyroid function.
Perhaps some of the forum members will have additional ideas.
Hope it works out.
-- steve
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#5
RE: Waiting on CPAP/Looking for adivice + hope
(07-12-2022, 06:23 AM)srlevine1 Wrote: Looks like you have your bases covered. I still would consider an inexpensive wearable recording pulse oximeter to keep track of your own pulse and oxygen levels at night?
I would also check your thyroid function.
Perhaps some of the forum members will have additional ideas.
Hope it works out.
-- steve

Thanks so much Steve! Appreciate it. I am putting in some calls today around my area to see if there are any rental CPAP's while I wait for my insurance covered one.
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