My cluster period started a few weeks ago.  Just shadows at first, for about a week, and then a big one.  And then another.  I steadily went from one a day to four a day.  I peaked at this amount, injecting myself with 24mg of Imitrex throughout the day.

During my 4th or 5th round at the ER (my physician is always out of pocket) they injected me with nerve blockers.  This is the only variable I can think of that could interfere with my conclusion in this topic.  But on to the real subject:

What provides me with relief?  I've heard plenty of people say caffeine does the trick.  I've tried regular coffee, caffeine pills and en the biggest Redbull they sell with absolutely no results.  Please don't laugh, scoff or (if you're in the middle of a cluster cycle) hate me for seemingly misleading you, I assure you that's not my intention. 

I have found relief in Dunkin Donuts Extra Large Dunkaccino. 
This thing is a whopping $2.50.  It's on the menu, and no I did not mean cappuccino.  It's like hot chocolate with espresso or something, but I swear as soon as I tried this freakin thing my headaches went away.  I woke up at 2 AM the night after or the next night and the cycle continued right where it left off.  Then 2 days after I got another one because I thought it was so good, and bam it ended it again.  I'm willing to ride this entire cycle out regardless of the 1000 or so calories that's in this thing. 

Like I said, caffeine has never worked for me before.  I'm pretty sure Redbulls have their fair share.  Someone test this and confirm my findings please, and I hope to God I'm not an idiot and you find relief.

Well, that makes more sense than does the yogurt intervention another poster suggested. I'm glad it works for you. Let us know how you make out as the cycle progresses. God bless. lance

Thanks Lance.  Here's an update:

Had one early this morning, cluster free all day long.  Gave my buddies a ride to DD and just so happened to get a shadow.  I wasn't planning on getting one until I got the shadow.  Aborted immediately.  I haven't even drank half of it.  Guys I really encourage you to try this and post your experience.

Note:  I am diagnosed with cluster headaches by a nuero.  When this started working I did a quick google search to see if maybe I have been having caffeine headaches.  I did not see the frequency that has accompanied mine, nor the other side effects of congested/runny unilateral nostril or unilateral eye 'squinting' and tearing.

There's something in this thing that's doing the trick.

Also I encourage you not to go to Starbucks.  They don't support your troops.  And no, I am not affiliated with DD or getting paid to advocate the use of Dunkaccinos as medicine, just sharing what I can folks.

Update:  Started getting a shadow at 9:30 AM.  Dunkaccino worked flawlessly AGAIN.

Took a nap around 1 PM and woke up at 3:30 to a strong shadow.  Went to DD and tried to get a SMALL Dunkaccino, it did NOT work.  I went back and ordered an extra large, it worked again.  Also I asked the girl what exactly it was, hot chocolate and espresso or what.  Apparently it's just DD coffee and hot cocoa.  Tomorrow I will experiment with just plain DD coffee.

Cheers

Crossing my fingers it continues to work for ya!

Joe

My husband has had some luck with strong coffee and staying hopped up on it to keep the headaches away during the day...it can't be healthy for the stomach or heart, though!  It doesn't keep all of them away, but during the day, he seems to be able to live a relatively normal life with the coffee, cold air, Tylenol with Codeine and staying active.  As soon as he lies down to nap or sleep, they are right there lurking.  On the flipside, last night was the first night in a while that he slept all night without waking and I did not even hear the oxygen machine start up once.  Could this be the beginning of the end?  I can only hope.  He's been out hunting all day today and I haven't seen him yet, so not sure how his day was today.  He seems to notice that a good night means a bad day and vice versa.  Maybe just coincidence though.  Glad you found something that worked for you, Elliott!

helplesswife wrote on Nov 16^th, 2012 at 8:10pm:

...Tylenol with Codeine...

This will not touch the pain of a CH, not even with even stronger narcotic pain killers. However it leads to a big risk of issues relating to narcotic addiction that far too many people here have gone through (myself included) when just using pain killers that doctors have prescribed.


helplesswife wrote on Nov 16^th, 2012 at 8:10pm:

I did not even hear the oxygen machine start up once.

It sounds like he is using an oxygen concentrator and not oxygen cylinders. The concentrator does not deliver pure oxygen and it does so only at a low flow rate making it a lot harder to abort a CH and taking a lot longer too. I'd strongly suggest that he moves to oxygen cylinders to kill off his CHs quicker.

Thanks Joe.

Helplesswife - It is odd that Tylenol works, everything over the counter seemed to make the CH 10x worse (Aleve omfg).  My current plan of attack is 1-3 strong coffees a day and an Imitrex injection in the middle of the night if one wakes me up.  Fortunately the coffee I drink in the afternoon/evening seems like it is preventing these.

Mike - Thank you for this post.  I have heard a lot of people getting relief from Oxygen but in my recent trips to the ER I was given an oxygen cylinder and still endured the entire attack in a hospital setting, albeit it did not seem to continue towards its climax, the strong shadow remained at a constant for about 1 1/2 hours.  Is the pressure of the cylinder and speed of the oxygen "shot" what's important in aborting the attack?

These are the three keys to make oxygen effective as an abortive:

High flow rate, minimum 15 LPM, preferably 25 or better.

A Non Re Breather Mask

Started as soon as you feel the attack coming on.

For a rapid abort, you need to get 100% oxygen to the lungs, at a rate to support hyper-ventilatilation. No outside air, no exhaled air. Thats's why re breather masks and nasal canulas don't work as the air is not 100% oxygen, too much outside and exhaled air. Oxygen concentrators start out at a lower percentage of oxygen and eventually get over 90% but STILL not 100% oxygen. Hope this helps.

Joe

The Tylenol with Codeine doesn't do much, but he's not willing to take any of the other stronger prescription drugs.  The last cycle  he had, he morphine the doc prescribed didn't even do anything and neither did any of the other drugs, so maybe the Tylenol with Codeine isn't really doing anything, maybe it's the other things, but its the strongest thing he can get over the counter.  It does nothing for anything that is already in full force, but seems to do a little something to some degree to help keep them down a bit during the day.  We are well aware of the narcotics issues and have been careful about that and I'm watching him like a hawk. 

Yes, he has a cocentrator.  We are aware that this is not as effective as the pure o2, but he's satisfied with it.  We talked about what everyone said here about how it's not as effective, but he's comfortable with what he has.  I thought the headaches were on their way out, but last night he had a bad one.  Even with only the concentrator, his mindset is different so that he seems to have the strength to deal with them better.  When I joined, he had nothing and I was afraid for him.  When we got the concentrator, his whole demeanor changed just knowing he had it.  As he says, it's not perfect, but it helps.

Not expecting anyone to understand our decisions, but what he's doing is getting him by.  The info on here is invaluable because I know that if/when what he is doing is no longer good enough, we'll know where to go from here.  He is faithfully following the vitamin regimen though and that will continue.

Thanks for the info Joe, that's good stuff and I will use it. 

Helpless wife- I'm sorry to hear that your situation is so grim.  Hopefully things will turn better for all of us.


Update:  Switched to regular non-DD coffee. Had a shadow yesterday morning and aborted it successfully.  Went cluster free all day and night, finally heading to bed around 4 AM Sunday.  Woke up to a shadow around 10 AM. 

I wanted to see for sure that these were not simply caffeine headaches.  I rolled back over and tried to sleep it off.  It developed into a cluster.  Eye tearing, unilateral nostril conjestion and of course, pain.  Went ahead and injected myself with Imitrex and rode the pain back into my pillow.


This evening, around 8 PM, experienced another shadow. Not trying to play around after my experience this morning, went to DD for my "guaranteed" solution.  Aborted the attack, but 30 minutes later another shadow began.  Devastatingly discouraging. Shot myself with another Imitrex injection and am chalking it up to a caffeine immunity.

Although this solution might be temporary, it DID drastically improve my situation of 4 attacks a day to 2 max.  That's more effective than anything I've tried yet.  Hopefully my núero consult on Tuesday will bring about an oxygen cylinder prescription or possibly verapamil.

Will continue to update on the Dunkaccino situation, maybe tonight was just a fluke. :-/

Thanks Elliot.  I hope you continue to find success and are soon pain free.  My (husband's) situation is not that grim compared to many (Gotta appreciate the little things).  I think his headaches are on their way out as the time between them seems to be getting longer.  His cycles seem to be quite predictable as far as how long they last.  He's only had 3 cycles since his headaches started in 2006, but so far, each cycle has been between 4-6 weeks.  Good thoughts your way!

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