Rumeke -- So glad to hear that you found your answer with your sleep study!  I hadn't heard from you since we corresponded some time ago and I have been hoping things turned out well for you.  Its been almost 18 months for me, CH-free and sleeping wonderfully.  I was reminiscing with my wife and daughter the other day about the greatest moments in my life -- Gotta say, #1 getting married, #2 and 3 the birth of our kids, and seeing #4 Paul McCartney in Red Square, the night I got my CPAP machine is solidly #5 on my list.  It has been beyond a life-changer.  I agree wholeheartedly -- more CH sufferers (especially those who suffer nighttime hits) should take this up with their doctors.

FYI - try some of the aroma therapy diffusers for CPAP machines.  They are really pleasant and help keep the sinuses clear.

I've been on a CPAP for 3 years and unfortunately, the night hits are still there while in cycle.  So I remove that mask and go to the O2 tank to knock it out.  The psylicibin has been the only answer to reduce severity and frequency.
My next dose will be this weekend hoping for the KO punch.  We will do anything to eliminate this pain.

Rumeke wrote on Nov 23^rd, 2016 at 11:02am:
Judy,

I have done the D3 Reg a couple of years ago, but never was tested nor
did the IU levels needed for effective results.  If I was chronic I would definitely try that regimen.  Since I am episodic, I clusterbust which is
method that works great for me and quickly.  I am blessed to have short
cycles 1-1.5 months with 1-1.5 years of remission.  Busting handles these
cycles and literally stops them dead in their tracks after 2-3 doses. 
I have found my magic bullet, but thanks for your concern and i'll look into the APAP as that term is new to me.

All the best and Happy Thanksgiving 

Chad

A CPAP machine is the secret to me getting a good nights sleep. Although not for me but my supporter!

It is well worth encouraging anyone who has sleeping trouble to find out if this is an option that would help them as it is amazing how much of an impact it can have. My supporter's machine is one of her most precious items (and mine).

Patti,

It is a bit daunting at first, the whole mask thing and air blowing..but I found once I acknowledged that I needed it and more so after my first night of no hits it was easy. My energy level during the day has skyrocketed! My O2 tank is gathering dust after over a year of daily nighttime hits! I've been on the D3 regimen for years but Batch and I have been unable to break this last long cycle.

The new machines are so quiet and small, I can't see where they would bother a sleep mate at all. Very simple to operate, the flow rate is preset and only increases when the machine senses you are either breathing shallow or you stop breathing. You can set the humidity level. Cleaning is simple since the masks come apart easily. Once you are asleep, you are not even aware of the flow increasing for an event.

My sleep study was done at home because the hospital couldn't supply me with high flow o2 since I was in cycle. A nasal cannula type thing rested at your nose, a pack was strapped around your chest and and O2 sensor on your finger. I just picked the tester at home and returned it the next day.

According to the machine (wifi enabled) my events vary greatly each hour of the night.

Talk to your Dr and see if he/she thinks a study is warranted.

Good luck!
Judy

Judy and Keith...
Thanks so much for your feedback. It's all helpful. Prior to this subject coming up, I was thinking 'why bother with the study, if I know I'm not going to want to deal with the treatment anyway?' With my CH currently under control, I have had less incentive, but this is certainly worth pursuing for the long haul. Thanks again.

Patti

Edited to add: Even without the actual headaches, I still wake up at a regular time most nights during my usual CH episode periods. The sleep issues haven't gone away along with the headaches. But it's still a wonderful improvement.