Its been a long time, hope everyone is well. I need some help, some strange things for me at least have been happening.
I am getting hit every single time I reach REM. meaning I am getting hit every 45 minutes to an hour. I stopped trexing because I thought I was rebounding, so its been all aborted with o2. I used 2000psi in my E tank last night alone. I did use trex at 7am this morning, because I need to get my o2 tanks filled today, I am empty.
Has anyone had this issue? Any thoughts on how to get past this? I need some sleep LOL.

Cheers,

Sean..........

G'day Sean, and nice to know you're still kicking. As to the night hits, many people have had good results from an OTC product called melatonin. A quick search around the boards may yield good results.

An alternative which I mention, but don't reccommend, is lying down to sleep and setting your alarm to ring an hour later. It means you never actually reach REM but if you keep doing it you'll go mad.

You may also consider sleeping upright in a comfortable chair or propped up with lots of pillows on the sofa.

Those night hits are a killer and I hate 'em. Get you when you're most vulnerable.

Consider doing sleep studies and see if apnea is a factor.
=========
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]

Nice to see you too my brother. I'm a little afraid to do the melatonin, or Zquil at this point. I don't want to wake up to a kip 8. The reason I posted is because I have never in 33 years had a cycle like this. I am at this point, 2 weeks into it, having maybe 20 hits a day?? I would have to say at least 15 alone last night, say over 12 hours. All but one were aborted with o2. I'll keep a log today and tonight, its getting ugly already, i'm getting too old for this crap  :)

Hey Sean, my cycle for many years included REM hits. I could count on 11PM, 1AM, 4AM and 7AM. Nothing actually helped except to abort as soon as I was awakened with O2. Sorry I don't have better news to share, but I did get better at resting in between hits. Melatonin and other sleep aids only served to put me deeper into the attack before I woke up. Prayin' for ya. lance

Thanks Bob and Lance. I'm sure I have Apnea, not sure if its causing this abundace of attacks, but it might be. Its worth a look.

Lance I live in Plymouth, where are you?

Have you explored the D-3 therapy yet Sean? It's the greatest thing around here since oxygen.

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH. It's had me off cycle coming up on 3 years.

Joe

Sean C wrote on Feb 19^th, 2013 at 9:02am:

Thanks Bob and Lance. I'm sure I have Apnea, not sure if its causing this abundace of attacks, but it might be. Its worth a look. Lance I live in Plymouth, where are you?

I live in Attleboro, just down the road. I've been going to Dr Rizzoli at Tufts, he's the head of the Graham Headache Institute. Good guy, very aggressive, no bedside manner until you get to know him. blessings. lance

Hi Joe, been reading about that, am definately going to give it a go  :)

Lance I go to the Graham as well, very educated staff there, can't say enough good things.

Sean, a bottle of Melatonin costs about 5 or 6 bucks.  You're already getting hit so many times each night..why don't you at least give it a try for a few nights.  It might just work and it would seem even if it doesn't, you wouldn't be any worse off than you are right now.

Sean C wrote on Feb 19^th, 2013 at 8:42am:

Nice to see you too my brother. I'm a little afraid to do the melatonin, or Zquil at this point. I don't want to wake up to a kip 8. The reason I posted is because I have never in 33 years had a cycle like this. I am at this point, 2 weeks into it, having maybe 20 hits a day?? I would have to say at least 15 alone last night, say over 12 hours. All but one were aborted with o2. I'll keep a log today and tonight, its getting ugly already, i'm getting too old for this crap  :)

You might be getting "comebackers" from the O2.  What flow rate are you using?

I've found several steps help me avoid the "comebackers."

1.  Use no less than 15 LPM, but more is better.

2.  Make sure your non-rebreathing mask is sealing against your face well.  To do this, put it over your face without the oxygen on an breath in.  If you don't feel substantial resistance, you may need a new type of mask.

3.  Chug an energy drink just before starting the O2.

4.  Make sure to stay on the O2 for at a minimum 10 minutes after the pain has completely subsided.  THIS ONE IS HUGE.  Doing this alone almost entirely avoids the comebackers for me.

Hi Dj, I use a "clustermasx" not sure if you can even get one anymore. Its an awesome mask. I have a regulator that I made for an E tank that gives me up to 60 psi if I needed it, but 15 is plenty, the clustermasx has a HUGE bag, it never empties. I never have an issue with aborting a hit under a 6 fairly quickly, say less than 10 minutes, anything above that takes about 20. I will give it the extra ten minutes tonight for sure, thank for the imput my brother.

Linda my love, I absolutely will give it a try, also bought all the D3 and Fish oil stuff today, I am going to take it after dinner.  [smiley=hug.gif]

I've had 4 hits since 7am, I am really being careful of what I eat and drink also, I want to rule out diet, last night I had MSG FREE Chinese food, was hoping they made a mistake.

Cheers

Sean..............

No problem, man, hopefully that helps.  This is my first cycle that I've had oxygen available, and it's been a life saver... but when I first got it, I was getting hit every 40 minutes.... which is WAAAY more than normal for me.  I almost gave up, but I decided to give it one last go, and I stayed on the Oxygen for like 20 minutes after the pain subsided, really just because I was being spiteful.  On that one I didn't get re-hit.

So then from that point forward, I worked it down to 10 minutes after I reach no pain and that is sufficient for me.  You may need to adjust the time a little.  This caused me to come up with a theory...

My interpretation is that, during an attack there is a period with no pain, but there is some sort of physiological activation happening... Like a migraine aura, only with no symptoms.

After x amount of time in the aura phase, you cross a threshold where pain is present and escalates to a climax.  This climax lasts for X duration (for me 40 minutes, usually)... then subsides.  You again cross the threshold into no pain, but there is still a duration of a painless postdrome.

My theory is that the Oxygen expedites this process, but you must ride out the painless postdrome while continuing the Oxygen in order to fully abort the attack.  Otherwise, the attack will re-escalate.

Just my theory.

Thanks Dj, I did add 10 minutes everytime, not sure if it has helped or not, but I'm going to keep doing it. I had 15 hits in a 24 hour period. Lets see what happens in the next 24 hours.

Last night I started the D3, today I'm not going to smoke at all (hopefully forever), hopefully that will knock off a few attacks. Still being careful with the diet, am also going to try to double my water intake, just curious if I might be a little dehidrated.


Cheers,

Sean.............

Last night I started the D3, today I'm not going to smoke at all (hopefully forever), hopefully that will knock off a few attacks. Still being careful with the diet, am also going to try to double my water intake, just curious if I might be a little dehidrated.


I hope it works as well for you as it has for me Sean. Coming up on my 3rd year cycle free after over 30 years with Mr. Beasty. Crossing the fingers for ya.

Joe

I hope so too Joe, I've been pain free for 3 1/2 hours, that might not seem like much, but its a win for me  :) will keep you posted, staying positive   :)

:)

All my cycles are usually like that; I don't get many attacks while awake. I can't take anything that will take me into too deep a sleep, because as someone has mentioned, the attack has more time to progress before I wake up. What helped me the most is staying on the O2 longer, at least 10 minutes after all symptoms have gone (often more). I also have the Optimask, which was a MAJOR help.
I would be interested to know how the D3 works out...
Good luck,

Sean C wrote on Feb 19^th, 2013 at 8:42am:

Nice to see you too my brother. I'm a little afraid to do the melatonin, or Zquil at this point. I don't want to wake up to a kip 8. The reason I posted is because I have never in 33 years had a cycle like this. I am at this point, 2 weeks into it, having maybe 20 hits a day?? I would have to say at least 15 alone last night, say over 12 hours. All but one were aborted with o2. I'll keep a log today and tonight, its getting ugly already, i'm getting too old for this crap  :)

Holy crap! 15 a night? The most I've ever had was the other night 1am, 3am, 6am. Each one lasted an hour (truncated by the slamming of a Mountain Dew).

I had a similar cycle several years ago before going chronic.  Found I had to sleep upright in a LazyBoy.  Didn't sleep all that well, but better than getting up every 45 mins. 

I would echo Joe's suggestion on the D3.  It works for a lot of people.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is another alternative.

Jerry