Hello all and thanks for this wonderfull forum.

I've been suffering with CH for about 6 years, diagnosed 4 years ago. Im now 31 and have normaly 3 cycles of about 2 month's a year. It started with one attack every second day, mostly at night or early in the morning, later on it changed to days with 1 - 4 attacks and painfree days. I had my longest CH free period from december 2009 until Oktober 2010.... wonderfull times.  This period im in right lasted 3 month until now and im still getting hit nearly every night and also on working hour's. Abortive is O2 with a high concentration non rebreathing mask at 15 l/pm and Imigran Inject, normaly splitted into smaller doses. It seems like the O2 isn't really working anymore in this cycle, it aborts the attack but 10 min's after its straight back, that can go on all night long, doesn't matter if i used the O2 10 - 15 mins as usuall or give it 10 mins more to avoid rebounds. So Imigran is the only thing working at the moment, first time that happend with the O2 :( Any one else experienced this situation?
Sometimes if i read other peoples storys and the amount of pain described im wondering about my Ch, i think it's difficult to set a amount of pain on it but i don't think my pain is so devastating like the most people report, so im wondering if the pain get's worse after a few years?

That was a little bit about me and i wish you all many painfree days ;)

Greetings Klaus

Hey Klaus, and welcome. Good questions asked. I wish there were equally great answers but things are what they are. First, the level of pain we experience can be higher or lower depending upon where we are in the cycle. Some episodics have said they experience higher pain levels as the cycle nears its peak, and then either diminish or ramp up toward the end. Chronics also have a variety of experiences and like myself, find high pain and low pain cycles within a never ending cycle. If you haven't seen the KIP scale check out the link to the left. It is a wonderfully/horribly accurate way of describing what we feel. Second, your O2 flow is rather low, although 15lpm was once considered high. Many of us find (myself included) we need 25-60lpm to abort a hit, and then once aborted, continue on 12-15lpm for another 10-15 minutes to minimize rebounds. Finally, clusters do morph, but not always for the worst. You have some reading to do here, and I would recommend you do it with pen and paper in hand, taking copious notes on what has worked, what has not, why, etc. Also, check out the tips on energy drinks. They seem to help me and others abort. In the meantime, God bless! lance

I have trouble with the "come backer" attacks too. 10-20 minutes after I shut of the 02, the beast comes knocking. I now drink a red bull as I start the 02, 02 beats it down, red bull seems to prevent the come backer.

If you're getting hit a lot at night, look into melatonin. An OTC sleep aid available at health and vitamin stores. Start with 9 mg about 30 minutes before bedtime. May have to adjust dosing up or down, takes a couple of nights to become effective for some. Helps many avoid the night time terrors.

Welcome to the board.

Joe

Just a small side note on the Melatonin- it's everywhere here in Austin, TX. I've seen it at Target, Walgreens, HEB, Albertsons, but the ones I buy for Lucas are at the Central Market. (Yall have those everywhere? Can't be sure, but the last 3 I mentioned are at grocery stores)

And Melatonin has my ringing endorsement- my husband was haunted by night hits- Melatonin knocked them on their a**. The few that snuck through were easily knocked out with O2 and then the Melatonin helped him get back to sleep afterwards- which had been a big problem before as well.

Odd to me to have spent so many years with Lucas suffering when the whole time we'd been walking by things in the grocery store that could have helped him. Well, never again and I'm just glad we found out about Red Bull and Melatonin now!

Hi Klaus,
I am new to the site just like you. I have posted 3 enquiries on the board & the help & support I have had is amazing.
Keep in touch with these people. They know what you're going through & are there 24/7. They are the most caring & helpful people you will ever come accross on God's earth.
Good luck Klaus.  [smiley=thumbsup.gif]
Tony.

Thanks all for your replies and kind words.
I tried the Red Bull and sometimes it helped me getting some Shadows to go away. I would like to try the Melatonine, sounds promising to me. But as it seems it's a prescription Drug here in Denmark, so i have to see my Neuro and ask her if it would be possible to get some.