Hello, my name is Kathleen.  I am new to the site.  I am unsure how long I have been suffering from ch's, for at least 1 1/2 yrs that I am aware of.  I was just recently diagnosed with ch.  I am a chronic sufferer and just learning of the signs and symptoms of an oncoming ch.  I don't sleep much, as I am afraid to awaking to one.  I am glad I have found this site and look forward to getting to know you all.

Welcome, Kat.   :)

Best advice I can give is to have a look around, get to know some of the people here, and read, read, read.  There are many years of collective experience here, and plenty of people who are willing to share that experience.  We're not doctors, but we've certainly become expert patients.   ;)

Tell us a little about the treatments you've tried so far, and the results you've had with them if you're so inclined.  Could be you could add to the collective wisdom, or someone may be able to give you some ideas for treatment that you haven't tried yet.

Again, welcome.

Best wishes,

George

What George said.  Yea, Kathleen welcome to the crazy cluster-world! :P 

For the most part, I would say that the techniques people use here will make people feel way better than suffering through it on their own or with an unknowledgeable doctor.  There are some sharp doctors who will help a lot too, hope you have found one of them.

You may already know from reading this site but oxygen seems to be a winner for us and you can read how to administer in the oxygen sidebar.  Caffeine/taurine for many is super good.  Sounds like you are a night-timer so maybe the kudzu/melatonin trick will allow more sleep.  Works for a bunch of people here and you probably don't want to slam a load of caffeine right before bed. 

If you want to skip the pharmaceuticals and go au naturale, check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for all things natural and mostly successful. 

Probably no silver bullets, but we can usually cut the pain by a lot once you try out all of the options available.  Everyone is different so see what is right for you.

Welcome again.  Sorry you needed to be here, but you might as well enjoy it while you are.   >:( (mean guy wards off evil cluster spirits!)

--Shaggy

Just diagnosed....good and bad! You know  what it is, now you just need to get it treated. I use a 2 pronged approach and have been very succesful at "managing" the beast. I'm 50, a 31 year episodic CH'er.

1: A good prevent medication. That's the one you take daily to decrease the number and the intensity of your hits. I use lithium. Verapamil is a common first line prevent and many here swear by Topomax. For me it cuts up to 70% of my attacks. (that varies as i go high and low cycle!)

2: An abortive regimen. The attack starts, now what. Your first line abortive should be oxygen. I can abort an attack in less then 10 minutes...that's completely pain free...using just oxygen. Read the oxygen info tab on the left, you have to use it correctly or it won't work. Imitrex injectables are my fallback when 02 fails.

To elaborate on a couple of Shaggy's points. Melatonin is an over the counter supplement available at vitamin and health food stores. take 9-12 mg just before going to bed. Many can avoid the night time wake ups this way. Energy Drinks, Rock Star Monster, Red Bull etc. Any containing the combo of caffeine and taurine. Chug one at the first sign of a hit, many can abort or at least really reduce hits that way.

Glad you found us. You suffer from a rare ailment, knowledge is your friend!

Joe

Welcome,

It will get better...

Coach Bill

Hey, Kathleen! Having a diagnosis is a good place to start. An awful lot of remedies that work for other headaches and conditions have absolutely no impact on CHs, so weeding out the unwanted and getting to work on the probably helpful is a much better way to cope.  Read everything here and make knowing CHs, your cycle and your triggers your absolute 2nd vocation. No one else will do this for you nor should they. Share what you've tried and do not be ashamed to ask.

One thing that helped me out (even as a 24 year veteran of chronic CHs-see, there is life even with the Beast!) is discovering CHs are a primary headache. This means nothing we did caused them. They are their own reason for existing, and are almost certainly due to a screwed up hypothalamus. Hang in there, and welcome! Blessings!