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Cluster Headache Help and Support >> Cluster Headache Specific >> CPAP!! Sleep Apnea and CH?
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Message started by Traveller on Jun 20th, 2015 at 9:20am

Title: CPAP!! Sleep Apnea and CH?
Post by Traveller on Jun 20th, 2015 at 9:20am
Been fighting chronic CH for four years now with the usual gamut of meds and no long-term success.  For the last six weeks I have been on Topamax (250mg) with some modest effect (at least taking some of the hard edges off) but still experiencing nightly CH's.  I recently moved and got a new Headache specialist who diagnosed me with severe Sleep Apnea (after sleep studies) and felt that this could be contributing to my almost exclusively nighttime CH attacks.

Last week I got the CPAP machine and I am now five straight nights with no headaches at all -- a condition I am happily describing as NFH! :D

I've searched the site (and the web) and found some general ties between Sleep Apnea and CH, but no real first-hand reports here.  Anyone else been down this route?  Given the relationship between O2 and CH relief it would make some sense given the 02 deprivation that comes with Sleep Apnea.

Doc says we will give this one month with the combo of meds and machine, and then start weaning off the Topamax to see which is the causative agent, but there is no question that the situation has improved 100% since I got on the CPAP.

Oh, to think that the end of this nightmare might actually be in sight...

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Bob Johnson on Jun 20th, 2015 at 10:09am
How nice to read a report of success, including having a sharp doc!
===
orofac pain. 2011 fall;25(4):291-7.
topical review: cluster headache and sleep-related breathing disorders.
bender sd.
abstract
this article reviews the existing literature of the common anatomic and physiologic aspects of cluster headache and sleep-related breathing disorders to point out evidence suggesting potential therapies beneficial for both maladies. a search of pubmed, as well as relevant textbooks, was conducted using the terms cluster, headache, sleep, apnea, pain, and chronobiology to find any previously published work that may connect the two disorders. relevant references in the literature were also investigated. as a group, cluster headache patients tend to have a higher incidence of sleep-related breathing disorders as compared to the noncluster headache population.

WHILE COMMONALITIES IN ANATOMY AND PHYSIOLOGY EXIST, ROBUST EVIDENCE LINKING THE TWO DISORDERS IS CURRENTLY LACKING. MANY PEOPLE ARE UNAWARE THAT THEY SUFFER WITH A SLEEP-RELATED BREATHING DISORDER. THE HIGH INCIDENCE OF THESE TWO DISORDERS OCCURRING TOGETHER SHOULD PROMPT THE CLINICIAN WHO TREATS CLUSTER HEADACHE PATIENTS TO BE ACUTELY AWARE THAT A YET UNDIAGNOSED SLEEP DISORDER MAY ALSO BE PRESENT.
pmid:22247924[pubmed]
=============================================================================================================================================
Cephalalgia. 2012 Apr;32(6):481-91.
Cluster headache and sleep, is there a connection? A review.
Barloese M, Jennum P, Knudsen S, Jensen R.
SourceDanish Headache Center, Denmark.

Abstract
PURPOSE OF REVIEW: Sleep and the chronobiological disease cluster headache are believed to be interconnected. Despite efforts, the precise nature of the relationship remains obscured. A better understanding of this relation may lead to more effective therapeutic regimes for patients suffering from this debilitating disease. This review aims to evaluate the existing literature on the subject of cluster headache and sleep. LATEST

FINDINGS: Several previous studies describe an association between episodic cluster headache and distinct macrostructural sleep phases. This association was not confirmed in a recent study of seven episodic cluster headache patients, but it was suggested that further studies into the correlation between cluster headache attacks and the microstructure of sleep are relevant. The connection between cluster headache and the hypocretins is currently under investigation.

SUMMARY: There is evidence in favour of an association between episodic cluster headache and REM sleep whereas no such relation to chronic cluster headache has been reported. Particular features in the microstructure of sleep and arousal mechanisms could play a role in the pathogenesis of cluster headache. Reports indicate that cluster headache and obstructive sleep apnoea are associated. Single cases show improvement upon treatment of sleep apnoea, but the causal relationship remains in question.

PMID:22407656[PubMed]

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Mike NZ on Jun 20th, 2015 at 5:43pm
Whenever I see my headache specialist one of the things she always asks about is my sleep and if I get apnea.

My supporter does get it and loves her CPAP machine (as do I as we both sleep better as a result).

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Traveller on Jun 21st, 2015 at 8:22am
Bob:

What the heck is a "hypocretin"?  Calls to mind an image of a little devil-like figure running around the brain stabbing his scepter into the Trigeminal nerve every night...

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Bob Johnson on Jun 21st, 2015 at 9:48am
Traveller:  Had to dig around. It's an obsolete term refering to diminished production of thyroid hormone.

Title: Re: CPAP!! Sleep Apnea and CH?
Post by blacklab on Jun 22nd, 2015 at 4:37am
Hi Traveller, Im pretty confident there is a direct link to sleep and Ch. there's a good video clip batch put up about a neurologist that treated sleep apnea and head ache disorders. In the video clip she expalains how she has been using the vit D regime ( same as batch has been ) quite independently. she said she is now removing people that were dependant on the c pap machines. She explained that we need to get into a certain state of sleep, where then the neuropathic pathways  naturally repair the bodies ailments. failure to get to this r.e.m state of sleep means that this does not occur and the body starts to go hay wire.
A big trigger for me, is if I miss sleep ! I have to be very careful on this other wise, bang, an onset of a cluster attack shows itself. The timing of cluster attacks seems to indicate that our natural body clock plays a significant part, hence how some sufferers use melatonin as a preventative.
Im a terrible sleeper, very bad snorer, I haven't been tested, but found a mouth guard that wil effectively eliminate my nightly snoring, which helps me big time get a good nights sleep.
I recon there's a strong link between the two....
I'm not saying that sleep disorders are the cause of Cluster headaches at all, but for me, as strong a trigger as alcohol is, unsettled sleep is just as bad.
I used to take the boat out for an evening fish, sometimes I'd decide to stay out all night, getting home for just enough time to wash the boat down, fillet the fish, shower and off to work !  I cant do that anymore, whether I'm in cycle or not, even if I managed to get 2-3 hours sleep on the boat thru the night, by 2-3 that afternoon, I'd either get a massive shadow or a CH hit, and it wouldn't settle until I caught up on sleep..
just my thoughts
colin

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Traveller on Jun 29th, 2015 at 9:05am
An update -- to provide encouragement to others -- we have crossed the two week threshold - with no headaches. 

If you have the any of the dispositive conditions for sleep apnea (key among them, excessive snoring) and suffer from nighttime CH I would strongly suggest you look into this possibility.  It has been a miracle for me.

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Traveller on Aug 23rd, 2015 at 11:06pm
Final Report.  Two weeks ago we completed the removal of the Topamax and I am still HA free, using CPAP alone.  I know they are still "in there" as I have some occasional nasal discomfort and tearing during the day, but since starting on CPAP therapy I have been totally headache free for over ten weeks now.  Worth noting that for the 5 years I have had CH my hits have been almost exclusively (99%) nighttime hits, so perhaps the linkage b/w CH and Sleep Apnea was much stronger in my case than in most.  In any event, for me this has been a miracle remedy.

Title: Re: CPAP!! Sleep Apnea and CH?
Post by AussieBrian on Aug 24th, 2015 at 4:52am
My brother told me that using a CPAP machine was a pain in the backside, so I suggested he re-read the instructions.

Even so, in times past, I've slept with O2 at just 2lpm and swear it's helped me ward off the monster that strikes an hour after finally dozing off.

It wasn't a non-rebreather mask, of course.

I reckon if it's working for you then go for it, and thanks for passing on a hint that may help others.




Title: Re: CPAP!! Sleep Apnea and CH?
Post by jon019 on Aug 24th, 2015 at 6:55pm

AussieBrian wrote on Aug 24th, 2015 at 4:52am:
My brother told me that using a CPAP machine was a pain in the backside, so I suggested he re-read the instructions.



I don't care who ya are....that there is funny!

Thanks for lightening my day Brian......



Title: Re: CPAP!! Sleep Apnea and CH?
Post by Chappy444 on Sep 10th, 2015 at 1:34pm
the neurologist that finally diagnosed my CH also asked me if I snored.  I said yes, and my wife sometimes has to shake me to get me to breath again.
well...he sent me to have a sleep study and I ended up with a CPAP and shortly after I started using it, my CH stopped (I was also taking verapamil)
I am not sure if it was the CPAP, the verapamil, the end of a cycle or a combination of all, but I was CH free for 2 years after 3 months of no CH I stopped taking the Verapamil as I hate the side effects.  I continue to use the CPAP.
not trying to throw a wrench on your "painlessness" but my CH returned after two years of remission. 
I went back on the verapamil but this time it doesn't seem to be helping like before.  I am getting ready to start the D3 after I have a talk with my doc.  hopefully this will last time I have a "cycle".
good luck with yours, I hope the CPAP works for your CH.
it definitely helped me and not just with the CH.  I had more energy, felt better, etc.

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Traveller on Sep 15th, 2015 at 10:08am
Thanks Chappy.  I am still pain-free at night with the CPAP but I am not out of cycle, in fact, I went chronic a few years ago.  My attacks were almost exclusively night time (probably 99%) and the CPAP seems to be effective for those.  I still have symptoms during the day (nasal irritation, some modest left side pain from time to time), and I have to be quite careful about sleeping on my right side for most of the night.  Just last week I switched to my left side too early in the night and got a good reminder, even with the CPAP.  For now the CPAP seems to have them under control at night, even though I am clearly not in remission.   Its been over 3 months now, still hoping for the best.  Good luck, I hope you find something that works for you.

Title: Re: CPAP!! Sleep Apnea and CH?
Post by Eroc on Sep 22nd, 2015 at 11:09pm
Just to chime in,  It is really great that CPAP is working for you.  I have mild APNEA and always sleep with my "machine".  My wife loves it to no end.  However it has had no effect on my episodic CH.   On the same note I am also resistant to the D3 regimen as well.  Having worked with Batch to try everything he and I could think of.  We still couldnt get it to work.  I guess I am just stubborn when it comes to those things. 

PF Wishes to all.

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