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Narcolepsy despite VPAP 10 years
#1
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Narcolepsy despite VPAP 10 years
Good morning. I wonder if anyone could offer some help. 
I cannot stay awake more than 4 hours without 1 45 min nap. I sleep 9 to 9.5 hours, get up for an hour then have to sleep 1.5 hrs more because it is just too draining to stay awake. 
I may have some insulin resistance because I get sleepy if I over eat or eat sugars. My glucose is never more than 140. I started Metformin 200 just to add some sensitivity to insulin. Not really helping. No narcotics. No alcohol. No drugs. No smoking. Live at 4200 ft elevation. Male. 60 years old. 
Presume CSA. Tried O2 at night and no difference so I suspect C02 retention. 
VPAP set VAuto, max IPAP 10.2, min EPAP 4.0, PS 3.8, Ti Max 4.0, TiMin 0.1, Trigger Very High, Cycle high. 

Avg Usage 9.5 hrs, Insp Press 9.8, Exp Press 6.2,  Leak 26 L/min, Vt 400 ml, RR 15, MV 6.5 L/min, % Spont T 100.0%, % Spont C 58%, AHI 0.8, central AI 0.0%

Pulmonary Function test shows normal. Sleeping with 2 puffs Ventolin really helps. Without it I can sense crackles in my airway from atelectasis without known cause. No history of asthma. Always been an athlete. 

Tried Acetazolamide but big headache. Tried 20mg suldinafil but big headache. Taking Theophylline 400mg ER for a week but don’t notice a difference. 

Taking Venlaxafine 150 XR and Lamotrigene 150 for lifelong BPD. These are sedating for sure but the least functional dose on the least sedating medications over the years. 

Several sleep studies have not uncovered anything. 

Q.  Is there anything the group of people as a whole on this forum, might contribute after looking at the VPAP settings?  Changing the cycle from very high to high doesn’t seem have made any difference?
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#2
RE: Narcolepsy despite VPAP 10 years
I have no solution for the narcolepsy off the top, but you should download the free OSCAR program to get better details on your events and respiratory statistics when asleep. The program can help us to confirm the possibility of CO2 retention and of course CA events, as well as flow limitation. See the Oscar link at the top of this page. We usually use a high trigger sensitivity to mitigate central apnea, but rarely use high cycle sensitivity unless expiration time needs to be preserved. A detailed chart or two from Oscar would help a great deal. Do you have a SD card in your S9 VPAP?
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Narcolepsy despite VPAP 10 years
To be clear do you actually have narcolepsy which is a real medical condition that has nothing to do with apnea, or are you just saying you have severe tiredness during the day?

Signs of narcolepsy should have shown up on your sleep study and should be obvious.
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#4
RE: Narcolepsy despite VPAP 10 years
Thank you. I will download Oscar. Yes, I have an SD card. 
BTW, I weigh 180 lbs and am 6 ft. 
I have trigger on very high. 
Cycle noted. 

I have:  an overwhelming daytime drowsiness and sudden attacks of sleep.  They did not show up on the sleep study.  

I hope this additional information helps. 
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#5
RE: Narcolepsy despite VPAP 10 years
Be sure to lock the SD card before putting it into your computer to download data, then unlock it before inserting back in the VPAP. The S9 series does not like to see system files that some computers will write and this protects your data.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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