I am just going to put this out there for nighttime sufferers of CH. PLEASE have your Neurologist test you for sleep apnea/hypopnea (shallow breathing).

I have been in cycle since August 2015, with nighttime hits ever couple of hours or at it's worse..every hour on the hour. The only saving grace has been my O2 and the D3 regimen.

My new Neuro insisted I be tested and I will forever be grateful. I failed my test miserably and picked up an APAP (automatically adjusts to your needs while asleep) machine. It has been 1 week of blissfully sleeping 7-9 hrs a night with no hits...not even one.

So please, please get tested..it may be the answer for you.

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.

Traveler,

I remember finding your post about how the CPAP worked for you and wondered if your relief had continued! I too wish all nighttime sufferers would get tested. If just one can get pain free and get healthier with and APAP or CPAP machine...what a blessing!

P.S. Hmm, some lavender would be heavenly. I'll look into it!

Judy

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.

Chad,

You said you are on a CPAP correct? I wonder if moving to an APAP would help any with the hits? There must be a study out there somewhere. I hate you are still being hit!  Are you also on the D3 regimen..if not please look into it.

Praying you find relief soon.

Judy

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

Chad, Are you also on the D3 regimen..if not please look into it.

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

Hey Chad...whatever works for you! As I look back on when I was episodic little did I ever think it would be getting hit every night for over a year. I am glad you found something that works..Pain Free is the ultimate end result!

You might consider getting tested for your D25 levels and giving the regimen another go sometime.  I am staying on it even though the hits have stopped.

Best wishes and Happy Thanksgiving to you and yours.
Judy

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).

Hi Judy,

Your post has renewed my interest in this subject. I have read lots of posts over the years here regarding the relationship between CH and sleep apnea. I haven't gone as far as a sleep study yet, but I have noticed a lot of shallow breathing, both day and night, that could certainly suggest hypopnea. And before my use of D3, I was getting the nighttime wake-ups. In my case, I'm pretty sure its not about obstruction but Central Hypopnea. It's also not consistent, so I'm really hesitant to resort to the device you have found so effective. What do you think of the APAP in terms of comfort, ease of use, and upkeep?

Patti

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

Patti - I second Judy's recommendations.  Once you get past the initial few days of use, the machine becomes second nature.  Also, worth noting - most insurance companies cover CPAP/BIPAP/APAP starting out on a "lease" system.  They lease the machine and monitor your use (either through an SD card or wifi if you have the high-tech version).  If you meet the insurance company standards for use then they proceed to buy the machine outright for you.  If you don't meet their standards they stop the lease and you are done with the machine.   If I recall correctly my insurance standards were 6 hours of nightly use for 20 of 30 days.  As with Judy -- that was no problem for me.  After the first night with no headaches you couldn't pry that thing from my hands!  I even got batteries for mine so that I can use it on long flights.  It was a lifesaver, no doubt about.  I'm well over a year with no hits.  PM me if you have any questions, happy to help.

Keith

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.

Patti,

I appreciate you not wanting to pursue a new sleep study since you are currently pain free...and Hallelujah for that!

However to be able to sleep straight through the night (9 hrs for me last night) does so much for your health and the healing sleep you will get.

I know you will keep it in the back of your mind and that's all Keith and I want. ha ha

Enjoy your pain free days!
Judy