Hi.
I'm grateful to have found this site.  I've been suffering with cluster headaches for 13 years now and thought I was alone.  Of course it stinks that you, or someone you care for has them too, but it is still comforting know that I'm not in this boat alone. 

Here is my story:
My CH suffering started at age 19.  My headaches come in cycles, or episodes lasting 1-8 weeks, with few to no breaks at all.  99% of my attacks begin during my sleep.  I am an incredibly sound sleeper and I also have sleep apnea and sleep with a CPAP machine.  It has been about a year since my last attack.  My current one started on Wednesday, 2/11 and I've been averaging 1-3 attacks per night and occasionally one less-severe attack in the evening before bed time.  I suspect that I get that 'warning' and can treat sooner as opposed to being woken from a sound sleep where the headache has already begun to escalate. 

When I was diagnosed with the sleep apnea 6 months ago, I also told my neurologist about my history with these awful headaches and also a new symptom that had developed which were visible shiny, silver sparkles and black dots.  At this time I hadn't had an attack in 6 months and these little shiny silver & black dots didn't cause any pain whatsoever.  She quickly diagnosed me with cluster headaches and optical migraines.  I was prescribed a low daily dosage of Verapamil to treat both conditions.  I have had no vision troubles and no headaches since then, until I ran out of my Verapamil last week.  After just 4-5 days of missing my dosage, I've been in CH Hell since.  I don't know if the Verapamil works THAT well or if it this all just coincidence. 

Anyway...here is my home remedy:
ICE CUBES!  ICE CUBES!  ICE CUBES!
It may sound crazier than crazy but I have been able to reduce the length of my attacks from 3 hours to 30 minutes and manage NOT to go into panic mode, which is unusual for me.

I take small ice cubes, or even ice water and hold it on the side of my mouth & Repeat (my CH are on the left side).  My teeth/jaw always hurt during attacks and using my tongue, I move the ice cube over my top teeth and then as far back as I can.  Sometimes I'll even eat an ice-pop and hold that in my mouth.  My CH seem to travel all over the left side of my face and head, so I will sometimes use an ice pack (or bag of peas etc.) and hold it over my eye for a while and then apply pressure and massage the area with the pads of my fingers. In a short time I can feel the headache begin to dissipate.  I think of it as a fire extinguisher putting out flames.  Knowing I would probably sound like a crazy person when I told my neuro about this, she seemed  'intrigued' and basically said "Hey, if it works for you then go for it".  I also read about the H20 treatment and will be drinking water like there is no tomorrow until this is over! 
Like I said, 30 minutes vs. 3 hours without panic has made my headaches much more manageable.  It may be worth giving it a shot the next time you are walloped with an attack.
Take care everyone! 

Hey, if it works for you then go for it.

You might want to look into high-flow oxygen therapy as well. Click the oxygen info link at the left of your screen and read.

That doesn't sound crazy to me!

Of course i've been an advocate of breathing really cold air deeply thru the nose to the point of inducing an ice cream headache at onset of an attack - that will actually abort an attack for some of us some of the time.

The ice cube thing you're describing has occurred to me, but I haven't tried it yet, due to...um...well I guess I'd just have to say it's due to stupidity.  :D

Gonna try to keep that in mind for any future episodes that may come my way, thanks.

I've personally seen about 3.79 gazillion people come on here and say that they're just glad to have found the site because now they know they're not alone, that's all.

My feeling tends to be "yeah yeah, yadda yadda, you're not alone. BFD. Be happy to have found this site because you are potentially going to find out the best ways to get some MAJOR RELIEF from this condition".

Glad you made it here and are starting to take it in.  :)

Hi Sonia, I used ice bags- one on top and one on the side for the worst attacks and while waiting for one of the abortives to kick in.

I can't say it helped reduce the length or severity but it did help me cope. I couple times I think I nearly froze my head.

As some others have said, check out the O2 link on the left menu.

Scott

Welcome to the board, we're glad you found us too! Several of the techniques you mentioned I have used as emergency relief techniques.

Now about oxygen! I cna abort an attack in 8-10 minutes just by breathing pure oxygen. I am then pain free with none of the soreness associated with an untreated attack. We start to sound like revival ministers when we rant and rave about oxygen but it's having such an incredible success rate, with none of the ugly side effects so many of our meds produce. Please take a minute to read the oxygen info link on the left and give it a shot.

Joe

Ya...when I'm in cycle, I just go to bed with an Ice pack on my head from the start...that way I don't have to get up to get one. ;D ;D ;D

Welcome Sonjia

I never tried the ice pack..Does it really Work? I usually just sit up on bed and breath like i am giving birth til the pain goes away...which can last for 1-2 hrs......
Got a few hrs sleep. No CH now..still a very slight shadow on my left hand sight.. it is like i know it is going to jump on me.
That was my 3rd night that i have used the ergos and coffee to prevent a full blown attack...the thing is I am really afraid to sleep!
My next big CH should be on Monday or Tuesday if they stay true to their cycle that they have been. It is that fear to wake from my sleep.
The one comforting information that i read on this board is that the Imitrex takes affect within 5 mins.
My next question is this:
my CH wakes me from my sleep and peaks in 5 mins to a kip9.If I  use the Imirtrex that instant how long will it take for the pain to go away? does it really really take 5 mins?

I haven't used imitrex in a couple of years, but yes. It worked really fast for me. I injected in the buttocks, and then could feel what I call the "snakes up the back" feeling as the med worked its way to my head. Within about 60-90 seconds I could feel it hit my head and all the tension and pain would just fade away within a minute or 2.

I say I don't use trex anymore because oxygen is almost as fast with none of the side efefcts...and it's a boatload cheaper!

Joe

Thanks everyone for the warm welcome to the boards and I am definitely interested in the oxygen therapy.  It sounds as though many of you have had amazing results.  Are doctors usually willing to prescribe oxygen for CH? 

Sonia-MA wrote on Feb 12^th, 2010 at 3:10pm:

I was prescribed a low daily dosage of Verapamil to treat both conditions.  I have had no vision troubles and no headaches since then, until I ran out of my Verapamil last week.  After just 4-5 days of missing my dosage, I've been in CH Hell since.

It's not an expensive med, any chance of refilling or renewing that script?

Hi Kevin! 
Yes...I just got my refill yesterday and happy to report that I only had one attack upon waking this morning.  It has been a while that I've slept more than 4 hours.  10 hours was glorious!  Thanks   :)

Sinead wrote on Feb 13^th, 2010 at 10:18am:

My next question is this: my CH wakes me from my sleep and peaks in 5 mins to a kip9.If I  use the Imirtrex that instant how long will it take for the pain to go away? does it really really take 5 mins?

When I'm at peak cycle and just getting hammered really strong at night like you describe, it can actually take up to 25 min. for the Imitrex to have aborted the attack, with some high kip levels experienced up to that point. It is quite endurable in comparison to 4 straight hours of high kip though, which can happen to me at peak cycle. So along with O2, imitrex 1/2 dose injections have been a real life saver for me.

Non peak cycle it can kick in within 5 minutes for me.

Hopefully you're onto the fantastique Imitrex tip?: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE