I am afraid to post this, first, because I'm new to this board, and second, because I am the wife a cluster headache sufferer, not a sufferer myself.  But my husband has had classic cluster episodes every 2-4 years for the past 30 years.  He was finally diagnosed in the early 1990's by a wonderful doctor in Cleveland.  He takes Verapamil as a preventative, and Oxygen, 25lit/min, as an abortive.  He also uses Imitrex shots when he's away from his Oxygen.  But here is the thing that has worked at night, and he has only used it the last part of his cycle three years ago, and the entire cycle this time (since Good Friday).  But it has worked for him, and I want to know if there is anyone else out there who has tried it.  In addition to the high level Oxygen he uses to abort individual CH's, he breathes low level oxygen (5 liters/min) all night, every night, and this is what has changed for him:  he has only had four headaches during the night during this cycle (as opposed to every night, sometimes twice a night, in previous cycles), and in each of the four times, his oxygen tube fell out of his nose.  I mentioned this once before in a post on an OUCH board, and got some criticism, but I don't really care, if this tip helps even one person get a little more sleep, that would be a very good thing.  I may be new to this board, but my husband and I have been managing these headaches alone on and off for a very long time.  We've tried a LOT of things that we think work, but then, we find out they don't.  This is one thing that really has worked for him (Getting sleep at night helps him fight  depression & not being afraid to go to sleep helps him feel like he's got a sliver of control), and I just wanted to pass that along.  He still gets his share of CH's during the day. But during the day, he can feel the CH coming on, and he can jump on the high flow oxygen, or take a shot of Imitrex.  Since he is a very deep sleeper, his night time hits are harder to abort, since he can't catch them early enough. Well, gotta go.  Love to you all.  I feel for you.

Wow! Two great posts.  Low level  o2 though the night or a small dosage of imitrex tablets.  As I am currently not getting more then two hours sleep at a time, I am mentioning this to my pain mgmt doc who I see at 9:45 today

ch wife,  That is very interesting and makes me wonder if cluster headaches are related to sleep apnea.  My brother in law was diagnosed with sleep apnea and he sleeps with an oxygen mask on all night every night.  (he does not suffer from cluster headaches)  But my point is, I wonder if they are related in some way.  Perhaps we should all be sleeping with oxygen masks all night?  Not getting enough oxygen seems to be the problem

Thanks 1961 for the links!  I can't believe that was written back in 2000.  My first one was in 02.  I didn't even know what it was then.  a scary time.  I know that even when not in cycle, i wake up alot during the night.  I suspect that i have some sort of apnea going on.  Time for a sleep study?  I am open to a mask all night like my bro in law!

The idea of getting my husband tested for sleep apnea never occurred to me because he is as thin as a rail (I shouldn't generalize, but most sleep apnea sufferers are overweight) and he doesn't snore (I do!).  But your post jogged my memory of a time when he had surgery.  His CH cycle was in remission, and he had not woken up yet from the operation.  I remember him lying in recovery and they were giving him oxygen.  I asked the nurse how he was doing and she asked if he was a smoker & I said yes.  She said that the oxygen level in his blood was really low & until he woke up, they had to give him oxygen.  Has any medical study ever specifically  addressed low oxygen levels in blood and the presence of cluster headaches?  We all know that the high level, 25 lpm oxygen has been recently tested to abort, but what if the problem is really in the low level of oxygen in the blood to begin with. . .what if my husband were to stay on oxygen all day long?  I wonder if he could sit still that long. . .thanks for the links 1961mom, they've really got me thinking.  Birdman, hope you are doing well. jmac, a sleep study wouldn't hurt. . .I'm going to encourage my better half to ask the doc about it.

OK.  And after thinking about sleep apnea and low oxygen in the blood, I went over to the clusterbusters.com website and read about the treatment using mushrooms, then I got to thinking, what does ingesting mushrooms do?  So I googled, and came up with an article that says, that mushrooms "are one of the few rich organic sources of the substance known as Germanium.  This important nutrient actually helps increase oxygen efficiency in the body." Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  hmmmm. . .what if someone were to try non-psychedelic, shitake mushrooms to get a dose of Germanium?  Just a thought.  I always have lots of thoughts. . .my poor husband has been such a guinea pig for my thoughtful research all these years. . .
@jmac -- a beer is an instant trigger for my husband, hands down.  He doesn't touch it at all when he's in a cycle.

jmac wrote on Jun 5^th, 2010 at 9:34pm:


My guess is that Oxygen levels in our systems may be "one" of the problems.  I think more along the lines of Winston Churchill's quote when he said to Eisenhower...."With these men, in this theatre, on this day, with these armaments....I can win this war!"

Carefully adding germanium is worth looking into. This is a quote from the Natural Health link above.       

"One of the main functions of germanium is to increase the use of oxygen by your body's tissues."

The article also stated that too much germanium "can be toxic"

I am heading to the market for Shitake Mushrooms for dinner! (germanium rich)

My husband's cycle is winding down I think.  He usually is attacked for two months, and then the CH's go away for a time. This is exactly two months, and he is on his third pain free day.  Per a suggestion on this forum, he adjusted his Rx for Verapamil (to immediate release) and it seems to be breaking the cycle. . . or maybe it's just the cycle is over. . .the insidious thing about these headaches is that you never know exactly what it is that makes them go away or stay.  Anyway, I've asked him to eat one shiitake mushroom every morning. (yay, breakfast!)  Shiitake and oyster mushrooms are higher in germanium than the more common white button mushrooms, and the way I understand it, you have to eat one every day for two weeks before it gets into your system.  It's worth a try, and these mushrooms have other qualities that make them just plain good for you, so I don't see the harm in it, as long as he doesn't protest. 
@ Skyhawk -- this is good to know.  My husband should go ahead and arrange for evaluation for sleep apnea, especially if some are getting relief from SA treatment.  I realize that Clusterbusters are talking about "magic mushrooms", but I was wondering if it was the mushroom part, and not the magic part that is helping . . . wouldn't that be awesome?
@1961Mom -- I agree, that low oxygen levels are probably one of the puzzle pieces.  So, slowly, we piece them together.  Let us know how you make out.  I bought Shiitake's yesterday and they are really good, and not as expensive as I originally thought they would be.  Since they have such superior healing properties, I'm going to start making these a staple in my cooking instead of the more common button mushrooms. 
@jmac -- that is a very good question. . . Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or It appears CO2 levels change with the seasons, but I can't find much that says O2 levels change seasonally. . .I've always felt that these cycles were connected to some kind of a biorhythm we know nothing about.  It just drives me crazy that it's always the fall or the spring. . .ahhhh, why?! Well, I've got to go.  Love to you all, and my hope is that you find pain free days.
Lynn

Last night was my third pain free night this week as well.  (2) pf free nights in a row followed by (1) night with (2) small attacks.  Very minor.  And then last night pain free again!!!!!  I think it is on its way out.  Man it was really breaking me down.  I have been on melatonin for about 2 or so weeks I would say.  (10 mg)  Wonder how long I should take it.  Going out for our anniversary tonight... Better eat some oysters!  Oh wait the cycle may be over... eating oysters could be dangerous!

Quote:

Only if getting lucky would put you in grave peril.

This is hard to believe...  So we are walking to the restaurant last night and i feel a shadow starting.  I can't believe it and don't say anything to the wife because... this can't be happening now right?  So we sit down at the table and I am not saying a word and she is starting to realize something is wrong.  That... and I downed both glasses of water the waiter just poured for she and i.  (real classy right)  The waiter was right back a second later refilling the glasses like... "are you a camel pal?"  5 more uncomfortable minutes pass and i am at a level 3 or 4 at which point i tell the waiter i am getting a headache and have to leave.  (he gave me a look like "i've heard that one b4 buddy)  So i went to the car and the wife went shopping.  20 minutes later it was gone.  A little history... i had 2 beers before we left the house and no water to drink.  i am CONSTANTLY drinking water and firmly believe this plays a big part in keeping them at bay (for me) I drink about a gallon and 1/2 per day.  So we ending up going back to the same place and had dinner... but needless to say, oysters weren't needed anyway...  ch ruining my life again.

My cycle started this year on 4/26 at 630 in the morning.  I was free for the last (2) years.  When it happened this year I couldn't believe it.  It is the only time I remember vomiting during an attack.  I think it may have been from the emotion/stress/disbelief that it was happening again.  Thanks for listening.

Hope to hear some more good news.  Tonight I am going the "buster" route.  Wish me luck!!!