Narcolespy, Trigeminal Neuralgia,Hypertension

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
msinc2
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Joined: Thu Oct 29, 2020 9:43 am

Narcolespy, Trigeminal Neuralgia,Hypertension

Post by msinc2 » Thu Oct 29, 2020 10:45 am

In 2013, after suffering a number of neuro health problems I was ordered to do a sleep study to confirm a narcolepsy diagnosis. I was prescribed a CPAP. I began to feel better. My energy level rose. My pains (overall) became manageable. But, wearing masks awakened my trigeminal neuralgia. I tried full masks and pillows. My trigger points (right side) are chip, upper lip, nasal tip, and cheekbone (under eye). My blood pressure was no longer elevated. But I could no longer use my CPAP. So after a year, I had to stop CPAP therapy. My blood pressure skyrocketed. We tackled the TN, blood pressure with no positive results. Then, I remembered my blood pressure numbers on the CPAP. I started using it and called the sleep center. The first night I used it my systolic blood pressure dropped 40 points. No, it didn't stay but it was worth a try. New masks are a better fit and pain management is more on the spot. My blood pressure is lowering. This time I hope to work on why something is not working. Still, TN is not always conducive to clear thinking and planning. I hope this forum will help me figure the right path. I'm in a safer place because of my CPAP.

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khauser
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Location: Nashua, NH

Re: Narcolespy, Trigeminal Neuralgia,Hypertension

Post by khauser » Thu Oct 29, 2020 12:04 pm

Hi msinc2,
Welcome! And what a story! Glad you are doing CPAP again.

I may have some people thinking I sell the Bleep DreamPort mask for a living, but if ever I read a situation where it made sense to try, your is it. There is NO headgear. With proper hose management the only thing touching you is the dream ports themselves, which attach somewhat like bandaids (they are NOT that big). It's the closest I have experienced to feeling nothing on my face, and wow, it's really close!

Here's 2 linkis:
https://www.cpap.com/productpage/bleep- ... -cpap-mask (Note: CPAP.COM, also the forum sponsor, is running a great sale right now)
https://bleepsleep.com/

You did not mention what CPAP system you have. Hopefully it is OSCAR compatible. Please do fill out the equipment profile.

If you have not done so, take a look at the threads at the very top of the forum:
http://cpaptalk.com/viewtopic/t172378/S ... STING.html
and
http://cpaptalk.com/viewtopic/t88983/Pu ... Hints.html

Lastly, please use this thread going forward. Every time someone posts it will float back up to the top, so there is no reason to start a new thread, and this makes it much easier to keep your history in mind...

-Kevin

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Sleep loss is a terrible thing. People get grumpy, short-tempered, etc. That happens here even among the generally friendly. Try not to take it personally.

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chunkyfrog
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Location: Nowhere special--this year in particular.

Re: Narcolespy, Trigeminal Neuralgia,Hypertension

Post by chunkyfrog » Thu Oct 29, 2020 10:53 pm

The quietest, lightest, softest mask I have ever worn was the Sleepweaver Elan.
I recommend you try it, if you haven't already.

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Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

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chunkyfrog
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Joined: Mon Jul 12, 2010 5:10 pm
Location: Nowhere special--this year in particular.

Re: Narcolespy, Trigeminal Neuralgia,Hypertension

Post by chunkyfrog » Sat Oct 31, 2020 11:51 pm

The quietest, lightest, softest mask I have ever worn was the Sleepweaver Elan.
I recommend you try it, if you haven't already.

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

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Miss Emerita
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Re: Narcolespy, Trigeminal Neuralgia,Hypertension

Post by Miss Emerita » Sun Nov 01, 2020 10:37 am

As a recent convert to the Bleep mask, I want to second khauser's suggestion. It took me a few tries to get the hang of applying the ports to my nose and then snapping on the interface. I still need to re-snap the interface on some nights; I can tell when I did it wrong by the amount of noise the mask makes under pressure. When I've done it right, the noise is minimal.

For hose management, you might want to try CPAPology Houdini hose lift. The arm extends out further than the Hose Buddy I had been using before, which is a plus with the Bleep. Once I got the set-up just right, I found that the only part of the Bleep that ever touched my body was the adhesive holding the ports in place. I'm not sure how sturdy the Houdini lift will prove to be, but so far so good.

It is essential to clean your skin before applying the ports with alcohol wipes, which I found in the diabetes-treatment section of my pharmacy.

Be sure to get the new improved Bleep, which has a longer and more flexible hose and a better venting arrangement. You can tell if you're getting the new one by seeing if there's a little black dealie on the interface that looks like a miniature bikini bottom. It holds some white filter material in place.

I really hope this works for you!
Oscar software is available at https://www.sleepfiles.com/OSCAR/