Right now I am waking up every 4 hours +/- with a cluster.  Has anyone tried setting an alarm for like a half hour before it is "supposed" to hit and got up and walked around for a few minutes so that the sleep cycle is broken?  I wonder if this has been tried and would abort the headache?  After a week of this regularity I have to try this tonight.  Would love to hear experience with this.  Thanks!

I've never seen a discussion of this approach here but suspect--guess--that this might only delay the attack. This would be possible if sleep apnea is part of your picture.

Melatonin, upward of 9mg, has been reported as helpful to block night attacks. Another old med, if it's still available, is ergotamine, 2mg, SL, taken just before bedtime. (It comes and goes on the market so your pharmacist can tell you what the status is.)

I've never tried that but, I am an over the road truck driver. my waking and sleep patterns change from day to day. I have been awake when my time came and the monster still came right on time. However, I have been able to head it off while awake (for the most part). I have little exercises that I do when I start to feel one coming on. I am not on the o2 therapy but if I am able to go into a cold room and start breathing deeply I can keep it at bay about 70% of the time. The bad thing is that after the monster leaves even if it is not a real bad one I feel as if i have ran a marathon for a week straight.
What ever you do keep hanging in there. May Be one of these days they will discover what is the cause of the ch and, will be able to fix the problem forever. ;D

Bob,

I am in Ocean View Delaware.  Are you having a cycle right now?  Mine started about 1 month ago.

Are you using a preventive med, such as Verapamil? Just treating attacks is not enough protection.
---
Print this and share with your doc and see the PDF file, below.
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

======
======
I've aged out of having active cycles! A benefit of age..

---

Very interesting question and cant hurt to try it.  We had to do this with my son when he got the "night terrors" every night after two hours of sleep.  We would wake him after 1:45 of sleep and make him go to the bathroom.  Then back to bed, when we did this he never had a problem.  Soon as we forgot, it would happen.  Eventually he outgrew(?) them I suppose.  Do you only get nighttime hits?

Thanks for the drug info.  I am trying not to go down that road for fear of side effects.

No, I get them at night sometimes like around 8.  And then if I am having a bad day I will get them throughout the day, strong shadows  but not a major hit.  But this year, the worst has been the middle of the night.  (worst pain level)

Oh yeah,  My daughter has "night terrors" every once in a while too.  Its awful isn't it.  Feel so bad for her.  My wife used to get them when we first got married.  Scared the crap out of me till we found out what was going on!

Drug effects vs. side effects. It's a choice every clusterhead has to make.

More like PAIN vs. side effects.

I'll take the side effects.

seaworthy wrote on May 26^th, 2010 at 4:44pm:

More like PAIN vs. side effects. I'll take the side effects.

Fine. Have it your way:

Drug effects on pain vs. side effects.

jmac, if verapamil side affects concern you,  how about lithium? Really seems to help Joe. He also is on a supplement regimen (as recommended by Batch) that he could tell you more about.

Would sure seem to be worth trying to block the hits and get some sleep!

I just huff oxygen.  My mask is always at hand.

          Potter

QnHeartMM wrote on May 26^th, 2010 at 8:28pm:

if verapamil side affects concern you,  how about lithium? Really seems to help Joe. Would sure seem to be worth trying to block the hits and get some sleep!

I am 39 years old and have suffered from CH as long as I can remember. I was convinced to try lithium this time, as this cycle was the worst I can remember. I was on topamax as well. And some of the vitamins fore mentioned. I was able to stop the monster at about 1 and a half- 2months rather than 4-6. I would most definitely recommend the lithium. Seemed like no serious side effects. I will definitely take the few side effects in place for the pain any day.

Much luv and PF wishes,
Pfunk

MELATONIN!!!!

I started using Melatonin in Nov last year. My night time hits are always 1am...always the worst, always kip 10's.

Take Melatonin every single night now. Did try stopping once cycle had ended but within days was back with revenge.So now i dont stop, in cycle or not!!!

Have just increased dosage from 9mg to 12mg this week bcuz night time hits were still breaking through - will see how this works.

Steph  ::)

I have been taking 9mg of melatonin for two weeks and the last week have had hits 2-3 hours apart.  Not sure if cycle is peaking or if melatonin is not helping.  Wondering if I should taper off and then try again or increase dosage.  Haven't had more then three hours straight sleep in 17 days.  Starting to lose it!

Read the latest research from todd Rozen

It is suggesting upwards of 18-24mg of melatonin.

I'm not suggesting you take this much as I am not a dr.

My magic number was 9-12mg and it gave me over a year of sleep. does nothing for the day other than help you cope better as you are now resting so the attacks are not as disruptive.

btw this is my 6th chronic year. This cycle started in 2004.

Melatonin is the only "med" I will ever take again

Think I will try 12mg  tonight.  Whats the worst thing that could happen? Sorry of that sounds sad, but thats were I am right now

Like Eric, melatonin is the only "med" I will take these days.  (Other than oxygen, of course.)  Unlike Eric, I am episodic.

My normal effective dose is 9 mg.  During the last go-around, however, I had to use 15 mg. nightly before I noticed any beneficial effect whatsoever.

Off-cycle, I'll either continue with 3 mg. nightly, or taper off altogether.  Doesn't seem to make much difference, at least to me. 

Best,

George

No difference with the 12mg last night.  Four attacks, all dealt with 02.  Might give it a couple of nights.  It at least helps me get to sleep which is difficult as I know I am going to get hit.

It can take up to a week for melatonin to kick in.  I think sometimes people give up on it too quickly.  It's worth a shot.

Best,

George

I'd like to add that just like our "on time" cluster attacks so should our melatonin dosages be taken.  I am in cycle and added the melatonin in March.  I started by taking 3mg every night at 8:30 pm for 3 days.  I added 3mg every 3 nights (all at 8:30 pm) until I reached 9mgs.  I had great results.  Just one week of 9mgs I was able to sleep through what normally would have been a 1 am and a 3 am attack.  My waking morning attack remains, but dang it's a no brainer that this is forward momentum that is IMHO worth adding to your cocktail.  What I noticed was if I missed my melatonin dosage time of 8:30 the middle of the night attacks would return AND as a bonus several of them!  These are kip 3-4 but the sheer number of them was exhausting!  So like "clockwork" I take my  melatonin now and have returned to the single attack upon "naturally wakening"   Meaning I wake up FIRST and then the attack comes within 3-5 minutes, I always feel PF upon waking!  I hope this is helpful to others just starting melatonin therapy!

Man this is so scary guys. Isn't it?  I feel like you are all telling my story:  "afraid to go to sleep" "Kip 3 to 4 all night randomly"  "always get one 3-5 min after waking"  Night time is the worst.  Hang in there everyone!  Its hard not to get depressed.  Yesterday I had one that started when I woke up and lasted 3 whole hours.  I didn't even go into work I was so exhausted and frustrated after that ordeal (and I am self employed so that means no money!)  But last night... not one shadow and no headache upon waking.  I have been taking 10 mg melatonin for about 1 week now.  Can't tell if it is working cuz I have been getting hits every other night.  One thing I was doing was taking excedrin PM (2 tablets) and the melatonin. That REALLY helped me sleep.  One night I was getting strong shadows and Kip 3-4's, but the excedrin just kept making me pass out.  But the end result was a massive kip 9-10 upon waking... guess it was just building all night.  Hang in there everyone.  I know relief is coming.  It really is depressing when you are only getting 3 hours at a time.  I just went through that for 2 straight weeks.  Finally I have had (2) pf nights this week.

jmac wrote on Jun 2^nd, 2010 at 6:09am:

Finally I have had (2) pf nights this week.

Cheers to you!

Great news, I need all the positive stories to keep going!  Hope your pf for many more days to come!

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.

One of the best regimens I use during a heavy hitting high cycle when I really need a good nights sleep is to take a quarter of a 50mg imitrex tablet a half hour prior to bed time.  This has worked very reliably for me for over 5 years...

I'm a bit Scotch so use a pill splitter to half and quarter the 50mg imitrex tablet...  I've found that the ~12mg chunks work quite well as a preventative in getting me at least 6 hours of uninterrupted sleep without any of the tight chest side effect feeling you normally get with higher imitrex doses. 

It turns out that imitrex has a half-life of 2 hours (clearance rate of 50% in 2 hours) and this dosage provides a therapeutic blood serum level for 4 to 6 hours to get me through one or two regularly scheduled CH attacks that hit every two hours.

Loading up with 4 to 6 calcium citrate tablets with vitamin E, magnesium and zinc washed down with a big 8oz glass of home made lemonade prior bed time will also helps when my arterial pH is low. 

I test my saliva with pH strips when the frequency of my attacks go up.  I also keep a log of my saliva pH and measure it three times a day at the same time each day and so far, whenever the frequency of my CH attacks go up, my average saliva pH for that day is below my normal low cycle daily average.

Hope this helps.

Take care,

V/R, Batch

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

Birdman, Please keep us updated!  I hope you find a way to sleep.  I remember my husband going through sleepless periods. . .sometimes it gets really nasty, and all I have to say about that is, never give up.   Keep trying different treatments until something works for you.

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

and many more......

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!

Very interesting stuff there.  I'll try anything at this point

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.

It really seems that low level oxygen in the blood is the problem.  I know that I get the worst attacks in the middle of the night after I have been sleeping.  However, the other night I got one while I was still awake, but I had been sitting on the couch doing nothing for 2 hours straight (watching a movie) And I wondered if my breathing had slowed enough for those 2 hours that my blood oxygen level was low.  As a side note, i definitely do not fit the profile for sleep apnea... Not overweight, etc.  but i do know that I wake up alot!  hmmm.... something seems to be pointing to low oxygen levels.  I know that the ONLY thing that aborts ch's for me is intense physical activity.  IE: getting more oxygen into the blood.  But I am tired of the middle of the night jogging sessions, so I am ready for a sleep study or an oxygen prescription.  By the way, I had about 8 beers today and no ch.  Guess alcohol is not a trigger for me...

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." START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  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.

Probably a coincidence, but I had mushrooms on my cheeseburger last night and I had another headache free night last night.   I would definitely like to try the shiitake mushrooms.  Is there a chance that in the spring and fall the oxygen levels change in the atmosphere?  Just trying to figure out why I have only gotten them in the spring?  So strange.

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

It really seems that low level oxygen in the blood is the problem.

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)

The mushrooms Clusterbusters are talking about are "magic mushrooms".

Just an FYI, I was tested for sleep apnea and don't have it. There is a high percentage of CH'rs that do though. Some find help for their CH with sleep apnea treatment and some don't.

Good luck, Don

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. . . START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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

Lynn this is just a wonderful post.  I am so glad I stopped by to read responses to the threads I've been following because they have all been uplifting posts tonight.  To read that your husband has had 3 pain free days & nights is wonderful news.  I have made a commitment to stay engaged with fellow sufferers even when out of cycle (if I ever get there again....almost, but not quite there yet!) for the very reasons that you address in your post.  The 'not knowing why' really drives me crazy! 

I have dosed 3 times (with magic mushrooms) since Mothers Day and have had excellent results, but I would love to be able to eat shitakes, add more germanium to my O2 deprived blood and see benefits.  Even if the benefits are fewer/shorter/less severe attacks.  That's why I've added 9mg of melatonin to my nightly pre-bedtime routine. 

I think you are an awesome partner, Lynn!  Maybe we can swap oyster-mushroom recipe's with a melatonin chaser!

ps  one thing that I thought was interesting was within the thread titled "why don't we pay more attention to this" which is about the testosterone levels being really low in the male CH sufferers (during cycles only) was that the other food high in germanium is OYSTERS!  The Romantic Little Oyster!  See my connection? 

;)  Cindy 

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!

Happy Anniversary!!!

you better get your a$$ out.

Melatonin can be taken as a regular supplement so don't sweat it.

If you feel better about being off of it then taper off once you are a couple of weeks free.

I personally leave things alone if they are working and do not have an adverse efftect

Quote:

Oh wait the cycle may be over... eating oysters could be dangerous!

Only if getting lucky would put you in grave peril.

Cindy!!!! I love that you made that connection with OYSTERS!!!. . .and it's so logical!  There is something to all of this, but I can't put my finger on it.  Low oxygen levels, low testosterone levels, seasonal appearance, arghhhh! We could be dizzy in logic connections. . .but one connection by one we uncover the truth about CH.  I'm so glad you are seeing these things too.

I'm concerned because I read that taking germanium in the supplemental form, even just a little too much, can damage the kidneys, nervous system and muscles.  The supplemental is banned in the UK.  So I hope no one uses the supplementals; I think that this is one instance where more is not necessarily better.

But consuming foods that contain germanium (oysters, shiitake mushrooms, oyster mushrooms, garlic, tuna, tomato juice) is safe.  So, got any good recipes?  The shiitake mushrooms make a fabulous topping, sauteed with onions, over a nice burger. . .and they're good in stir fry.

@jmac -- HAPPY ANNIVERSARY!!! Wouldn't it be great if your pf days are upon you, too?!!  It is so cool that both you and my husband are pf for the last 3 days (seasonal?).  He started his cycle at the beginning of April.  When did your cycle start?

@birdman. . . what's going on with you? how are you doing?

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.

You are living a parallel life of my husband.  His started around Easter, they're starting to go away, and it's been a couple years since his last cycle.  I have been to that dinner before.  It's OK.  When you're out of cycle, take your wife to a different restaurant, and celebrate again.  Tell her she's worth it.  Here's hoping you're pain free today.

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

Good luck, Birdman, I hope you find relief -- keep us posted.

CHwife,  Is your husband still PF?  I just had another one this morning.  It was a pretty bad one... but I still feel like they are on their way out.  The intensity seems to be lowering and the frequency is definitely dropping off.  Take care,

Josh

Josh, His last full headache was Monday night, but it was an odd time of day for it.  Before that, he had 3 pf days, and today, he had a shadow, but it didn't go into a full headache, and he didn't use anything to abort it because it just stayed shadowy.  So, 3pf days, 1 CH, 3pf days, shadow today.  He's sure they're on their way out, compared with 3-4 per day he was getting about two weeks ago.  You get so sick of them, you are almost afraid to believe they're leaving, because the alternative would break your heart.  He's still sleeping with a low flow oxygen (that seems to keep them at bay during the night) and taking Immediate Release Verapamil.  He'll keep that up for a week after his last CH, and then he'll start to taper the dosage.  Spring is changing to summer, and they'll be gone soon.
Lynn

Just when you thought it was safe to go back in the water. . .  Two CH's on Sunday.  Nothing today.  The only thing different was he backed off his Verapamil dosage on Saturday.  I know, it was probably too soon.  He upped the dosage again after the two CH's on Sunday.  Insidious.  I admit, I was lured into thinking they were gone.  I'm bummed for him.  This is the longest bout he's had with them, but it's also been the least painful because we have been treating them aggressively with 02 and Imitrex and Verapamil.  This time, we aren't arguing with the insurance companies, so really, that part is like a day at the beach (did I mention that during his last cycle a couple of years ago, he was sitting in the parking lot of the drug store after being denied Imitrex by our insurance company, and we couldn't afford even one more shot, and he got a CH.  It was a K10, and he actually bent the steering wheel in our van?  Normally, this man is as gentle as they come.  He was stuck in the van, because he couldn't drive and he couldn't walk around the parking lot holding his head and pacing, for fear of being picked up by the local authorities).  I'm trying not to be bummed, but I'm feeling sad.  Thanks for listening.

chwife wrote on Jun 14^th, 2010 at 10:28pm:

It was a K10, and he actually bent the steering wheel in our van?  Normally, this man is as gentle as they come.  He was stuck in the van, because he couldn't drive and he couldn't walk around the parking lot holding his head and pacing, for fear of being picked up by the local authorities).

Boy, does that story ever ring bells.  Not exactly the same, of course, but there have been times...   :( 

After several years here, it's still a daily astonishment to me that there are others who truly know what happens to us, and what we do to get through them.


Quote:

Thanks for listening.

Thank you for sharing a part of your life with us here, and thank you for supporting our brother clusterhead.

Best wishes,

George 

Nothing like a good support person.  My wife just handed me the ice pack she fillled for me as I am stuck to the 02 tank for my morning hit.  Couldnt go this alone

So Birdman......tell us "did you bust?"  How are you?  Always on my mind!!!! 

Sending  you pain free wishes!

Busting tonight.  Got home too late and ended up having a terrible night.  Up every two hours.  Hoping tonights bust gets me some much needed relief.  Starting to lose my sanity, it's amazing what interrupted sleep can do to your mind.

CHWife,

I hope re-upping the verapamil works, I hear you on the thinking the worst is over. My wife won't even comment when she notices I didn't go to the basement to hit my tank that night, she is afraid of jinxing it. I believe we are a pretty optimistic group and when we get a few PFDs we start to get ahead of our selves, at least I know I do. Good Luck and hoping again for PFDs for your husband.

David

One last night, he woke with it around 4AM.  This is one of only a handful of nighttime headaches since Easter, and he had a shadow this morning around 10. Wait, make that a CH at 10 . . .I just found the empty Imitrex container. 
@ George -- I cried when I read your post.  I can't even tell you why.  I guess it's just knowing there's someone out there who has gone through the same type of pain and cares enough to write a few words of encouragement -- it means so much.  I was feeling pretty hopeless and your words helped.  Thank you. 
@ David -- I know what your wife is going through when she is afraid to jinx it, and I feel like I know first hand why ancient cultures have superstitions. . .if I stood on my head and his headaches stopped, I'd try it the very next time and if it worked, I'd swear by it the third time around.  None of us, sufferers or family of sufferers asked for this and it's such a desperate place to be . . . a place where there is little control.  But you all have given me hope and that has made all the difference.
@Birdman -- (ditto 1961Mom)I hope you are finding relief. 
@Josh -- How are you making out?  Are they going away?

@ everyone -- Hope you find PF days SOON!!!

I know what you mean when you said about being self employed and not able to work the next day very well. Jeremy


jmac wrote on Jun 2^nd, 2010 at 6:09am:

Man this is so scary guys. Isn't it?  I feel like you are all telling my story:  "afraid to go to sleep" "Kip 3 to 4 all night randomly"  "always get one 3-5 min after waking"  Night time is the worst.  Hang in there everyone!  Its hard not to get depressed.  Yesterday I had one that started when I woke up and lasted 3 whole hours.  I didn't even go into work I was so exhausted and frustrated after that ordeal (and I am self employed so that means no money!)  But last night... not one shadow and no headache upon waking.  I have been taking 10 mg melatonin for about 1 week now.  Can't tell if it is working cuz I have been getting hits every other night.  One thing I was doing was taking excedrin PM (2 tablets) and the melatonin. That REALLY helped me sleep.  One night I was getting strong shadows and Kip 3-4's, but the excedrin just kept making me pass out.  But the end result was a massive kip 9-10 upon waking... guess it was just building all night.  Hang in there everyone.  I know relief is coming.  It really is depressing when you are only getting 3 hours at a time.  I just went through that for 2 straight weeks.  Finally I have had (2) pf nights this week.

Wow I didn't know that many CH sufferers Have sleep apnea. I have SA but am unable to afforf treatment. Maybe I should sleep on o2 Jeremy

Jeremy,
My husband is the only one I have heard of that does this. . .he sleeps with low level oxygen all night.  The result has been like night and day.  Earlier cycles have woken him up to the point where the sleep deprivation was making his (and consequently, my) life a living hell.  He talked to our GP and she put him on low level oxygen all night long.  With the exception of a hand full of headaches since Easter, it has worked.  I think a trigger for him is sleep apnea, or low oxygen levels in the blood, but he has not been tested for SA yet.  During this cycle, he is so happy that he gets sleep, he hasn't gone back to the doctor.  The machine he uses at night is an oxygen concentrator that delivers 5-7L/min of oxygen.  This is not enough to abort a headache once it starts, but when he breathes it continuously as he lies in bed, it seems to stop them from coming at night.  It worked the very first time he tried it, so if you are low on funds, ask if you could rent one for a few nights to see if it works, if it doesn't work, send it back right away and try something else. . . there are plenty of ideas here and it seems that nothing works across the board for everyone.
You could give it a shot.  Good luck & I hope to hear about what you decide to try.
Lynn

This is so encouraging to read that something is working this well.  Does he have any troubles keeping the mask on through the night, or yanking the tubes, etc.  I am a toss and turner girl!  Just trying to imagine this as an option.

Actually, he doesn't use a mask at night (only during the day when he uses the higher flow oxygen for aborting) , just the tube that goes around the head and two prongs that go into the nostrils, and yes, he tosses & turns. . .so about twice a night (I'm a very light sleeper), I reach over and make sure he's still got it wrapped around his head.  He's also changed his sleeping position.  He LOVES to sleep on his stomach, but he has made a point of sleeping on his back and side instead.  That's another thing I check him for if I wake up.  I read somewhere that some people who sleep on their stomach actually cut the flow of oxygen by breathing into their pillow.  At least two times recently, he woke up with a headache after he had pulled the tubes out of his nose.  He's such a deep sleeper, he doesn't wake up until he's well into the CH, so the pain is usually intense and hard to abort by then.  You know the drill.  But we are both so thrilled that he can get some uninterrupted sleep most nights.  I think the sleep deprivation causes an extreme exhaustion that leads to suicidal thoughts. Add pain to the sleep deprivation and you really have a scary situation on your hands.  Beating that sleep issue has made this cycle almost manageable. 

Chwife - how is your husband doing?  I hope its all over for him.  I haven't had one since my last post.  We went away on vacation so I haven't been around.  I really hope it is gone for him.  Hope you are doing ok as well.  Thanks for all the info about apnea and support.  Guess I'll be back on here next spring...

Hi Josh,
Thanks for asking.  I'm so happy to hear that you are done with this!  I hope we don't see you next spring!  I hope you are done forever.  We went on vacation as well, and he backed off of the Verapamil because he thought they were gone, and he wanted to have energy -- it's VACATION!!! Well, he started getting one a day again.  He was also away from his oxygen, and I'm not sure if it was the reduction in meds or the reduction in oxygen, or both, but he relapsed during our vacation.  Since June 30th, since we got back, he's upped his verapamil again and hasn't had a hit.  He's very touchy and has a short fuse - I just want my other husband back!  Hopefully, soon.

CH Wife,

I understand how he feels, I have gone into" remission" before, given back my 02, got rid of my meds etc, only to start getting attacked a month later only on the other side of my face. I was very pissed off at the world after that for a while but I eventually started fighting back again and I went back to being the wonderful pleasant guy I am (okay that last part is little strong). But seriously I did go back to being my old self once I got over being mad about it being back so soon. I hope he fights back with a positive attitude and you get your husband back.

David

It looks like I have my husband back.  I just thought I'd check in to see how you all are doing.  He's weaned himself off of the Verapamil and we've returned the Oxygen.  Next time, we are going to start right away with high level Oxygen therapy.  He used an awful lot of drugs this time and lost 10 pounds.  He is about 5'11" and only weighs 150 to begin with. . .We didn't try high level (25L/min) this time, but I'm going to suggest we do it next time.  Oxygen therapy seems to be the best approach for him at this point.  This was the longest cycle he's ever had, and he started the cycle by addressing the attacks with Relpax and ended the cycle addressing the attacks with Imitrex.  The pain factor was the lowest this time because he addressed all but one headache with meds, and the sleep interruption was almost non-existent -- he was on low level oxygen all night everynight, and I know that this treatment is not believed to help anyone, but we know beyond a shadow of a doubt that it helped him with night attacks.  He woke in the middle of the night only a handfull of times this cycle.  That has never happened in his life, and the only difference this time has been that he was on low level oxygen everynight.  I don't know what to make of it all. . .I guess none of us do.  When you experiment as much as we have, and find something that appears to work, you go with it.  Perhaps oxygen deprivation was one of his "triggers" and maybe he has sleep apnea.  These are things we still need to investigate. 

There's still SOO much we just don't know about CH! Congrats on the pain free time and getting hubby back. May your remission last a lifetime!

Joe

So, I have been thinking alarm clock too! Has anyone tried?
Success?

Share?

Peace,

Boski     :D

boski wrote on Aug 2^nd, 2010 at 6:30pm:

So, I have been thinking alarm clock too! Has anyone tried? Success? Share? Peace, Boski     :D

Not being mean here but...here are my thoughts on that...

I've lost enough sleep from CH itself, why would I want to loose more by setting my damned alarm to wake me up (before ch hit) to avoid a ch hit?   I'd rather take an allergy pill or melatonin (if you can take it) and avoid the wake up from CH or alarm clock.    :D   

Interesting idea for someone else to test if they wish though.  ;)

Thank you, Joe, and I hope the same for you and eveyone else who posts here. 

Not mean!

But, those options aren't workin for me!  I am getting no
sleep at all!  Brain thinks it can out smart it self but dam,
fat chance that's going to happen!  Reason I was thinking
clock was to catch the dam thing early!  Earlier the faster
the relief, starting to see my thinking.  I wake from pain but
do to no sleep, sleep so darn heavy don't feel it till its a
ripper, then I scare everyone around me, with my
screaming dance at whatever ungodly hour it may be.  I'm
waiting for the cops to be knocking on my door one night
asking all kinds of questions.  So, no I'm not trying to
sleep less but really more if you think about it.  Alarm goes
I feel slight pain shoot and back to bed and sleep like baby.
Almost doesn't register.  If I go through a really painful one
that takes me 1/2+hr to get thru then that's
disruption! This was my train of thought on Dope-o max! remember.

Just string the pot.

Peace,
Boski

jmac wrote on May 26^th, 2010 at 3:50pm:

Thanks for the drug info.  I am trying not to go down that road for fear of side effects. No, I get them at night sometimes like around 8.  And then if I am having a bad day I will get them throughout the day, strong shadows  but not a major hit.  But this year, the worst has been the middle of the night.  (worst pain level)

I completely understand,  I am the same way about drugs, but it is not physically good for you to have the clusters, either!!!  So, I take as little preventive drugs as possible as to not have the ill effects of cluster headaches.  They are debilitating over time!

Quote:

Reason I was thinking clock was to catch the dam thing early!  Earlier the faster the relief, starting to see my thinking.  I wake from pain but do to no sleep, sleep so darn heavy don't feel it till its a ripper, then I scare everyone around me, with my screaming dance at whatever ungodly hour it may be.

I'm right there with you, Boski. I didn't use the alarm clock thingie, although I considered it for the same reasons you mention. I did, however, stay awake for my night cycle hits (11pm and 1am) to catch them early and abort quicker before they turned into a beast I couldn't catch. After the 1am hit, I was usually able to sleep for 6 hours or so. If I didn't stay awake, the sucker morphed into a monster KIP hit. So, I know what you're saying, and I've been there. Don't remember if you said, but have you tried melatonin-in the 9-18mg range? Blessings. lance

Glad to see your post CHwife, it has been awhile. I hope he continues to improve.

David

wimsey1 wrote on Aug 3^rd, 2010 at 8:06am:

Quote: Reason I was thinking clock was to catch the dam thing early!  Earlier the faster the relief, starting to see my thinking.  I wake from pain but do to no sleep, sleep so darn heavy don't feel it till its a ripper, then I scare everyone around me, with my screaming dance at whatever ungodly hour it may be. I'm right there with you, Boski. I didn't use the alarm clock thingie, although I considered it for the same reasons you mention. I did, however, stay awake for my night cycle hits (11pm and 1am) to catch them early and abort quicker before they turned into a beast I couldn't catch. After the 1am hit, I was usually able to sleep for 6 hours or so. If I didn't stay awake, the sucker morphed into a monster KIP hit. So, I know what you're saying, and I've been there. Don't remember if you said, but have you tried melatonin-in the 9-18mg range? Blessings. lance

Hey Lance:

I did go up as high as 15mg's on the melatonin. Didn't
seem to push me through the night ones, still came on.

I find that I stay awake and the hit never comes. I can
stay up till dooms day then 1.5 to 2 hours after I fall asleep
bang and after few days with cat naps you just can't help
but crash hard. That's when the beast really get's me good.
I want to sleep bu the brain doesn't let me. It's seems like
a big game in my head.  I'm just here for the ride, not in
control at all.