Hi everyone.
I am a long time sufferer of CH. Started when I was 2, and now I am 41. The doctors tried to label them as Migraines, just really bad ones. I do get migraines on occasion (light and sound sensitivity, ect) , but the "bad" ones are really different. Was taken to a lot of doctors when I was little for jumping off the stairs hitting my head as I go down to stop the pain (I was 4 at the time). They thought that was a little extreme.  Along with banging my head on walls, and even remember something about a hammer one time. I went to specialists all over TX back then. Had x-rays, scans, poked, prodded, ect.  So, they gave me some type of "knock out pills", forget what they were called. And it helped till I woke up and they started all over again. Missed a lot of school too. Then they stopped when I was about 14. (could have been me and my friends  experimenting with mushrooms and other substances, but quit all by the time I was 15).

After that I had an occasional day here and there with them, but for the most part, they went away. They were rarely above a 6/10.

Flash forward to the age of 39. Just out of the blue, everything changed. Went for 2-1/2 months of pacing, a dozen trips to the tub a day (soaking in the water seems to knock it down a few notches), screaming, throwing things, and just really loosing it. I ended up in the ER. Again, they tried to say it was a migraine. Told them no, it was a cluster, but they are the doc's right? Most of them read my VA charts and think a CH is a bad migraine. Finally found a doc in the ER that knew exactly what it was and knew a lot about them. He gave me Zomig (5mg) and 30 min later, they were gone for the day. Amazing... Imitrex does not work for me. But the Zomig does. The drawback to it is that it puts me into a drunk like stupor. I loose all energy, and can't function the rest of the day. Feel like a dead battery. But hey, it sure beats the pain.

Since the Ch's restarted, I have not been able to work much. They come and go. Then I got some bad news a few months ago. The VA (my medical provider since I lost most of my income due to CH's) stopped providing Zomig. They changed up to Imitrex. Apparently, the Zomig works on migraines, and Imitrex does too. The cheaper one they kept, the more expensive one they did not. But what about people like me that have CH's? Guess that wasn't factored in since there are not that many of us with them verses migraines. Yesterday and today I had one of the worst set of headaches yet. My Zomig was gone, and I tried the Imitrex again. Took several and no relief at all. Went down to the ER at the VA today (10am-4:30) and kept getting the run around about Imitrex does the same thing and it was probably a bad migraine. Even had a nurse say that it was allergies since my nose was really runny. Finally found a nurse who really cared and tried to help. She got a doc to get ahold of the pharmacy to specially re-order Zomig (for me) and give me what they had left in stock. Got a refill for 5 lots of 9 pills, plus the 9 I got today. Now I am somewhat recovered, and really worn out from another day of CH's. The "shadows" are there and tomorrow, I will again have no energy after taking my Zomig, but at least I won't be dancing, throwing things, screaming, thinking of digging my eyeball out with a fork, and having really bad thoughts. So, I figured I would finally register on this site and post my story. My wife has been really supportive and she found this site. Glad to be among others like myself. I hope to find other treatment opinions on here and try them. The only thing that I can say in my experiences that works for me is Zomig, Afrin SC , and pepper spray. Plus a great supportive wife who won't take no for an answer at the hospital.

Yeah....time to take a GIANT step backwards and re think how you treat your CH. Rather then curling up and going defensive it's time to attack!! I use a 2 pronged approach, I'm 50, male episodic for the last 31 years.

1: A good preventative medication. This is a med you take daily to reduce the number and intensity of your attacks. I use Lithium at 1200 mg a day. Takes about 10 days to become effective but once it's in me blocks up to 70% of my attacks. Verapamil is a very common first line prevent and effective for many here. Topomax has a lot of loyal followers too.

2: A good abortive. The attack is starting, now what? Your first line abortive should be breathing pure oxygen, with a non re breather mask, at a flow rate of at least 15 LPM. I can abort an attack in less then 10 minutes just huffing pure 02. Read the oxygen info link on the left as it must be used correctly. Imitrex injectables are effective but expensive and in my opinion no faster then oxygen. But I ALWAYS have an injector with me on cycle if I'm away from my oxygen.

For now get you some energy drinks. Red Bull, Rock Star, any containing the combination of caffeine and taurine. Chug one down at the first sign of an attack. Many can abort or really reduce an attack this way.

Doctors will not help you much with this condition. It requires you take charge, educate yourself and work with a doc to get what you need.

Based on part of your post, check out    clusterbusters.com    your use of those substances is probably a big part in the headaches stopping. A suprisingly effective treatment if you are so inclined.

Welcome to the board, let's get you to stop hurting so much, that sucks.

Joe

Glad to hear your wife found the site for you. I too found this site some years ago and my husband Guiseppi has become one the biggest fans (if not a disciple for all that is preached here!)

Be sure to let her know we have the "Supporters Corner" where we spouses/supporters collaborate when we know our loved one is at his/her wits end.

Welcome aboard!

Christy

Howdy Neighbor!!

Sorry to hear the beast is havin his way with you!!

Check your PM's

Dallas Denny

Hi Tom, sounds like you're on the right track. Imitrex injectible is much more responsive than nasal. You self-administer - the contraption is one of those spring-loaded things that you hold down and "shoot". One of the CH'rs can come along with some additional tips for you.