Welcome to the board Davey, the good news is there is a LOT of good stuff available now to keep ya from hurting.. .. I’ve had CH for 35 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

You mention most of your attacks are the nocturnal variety. Many have found they can reduce or even eliminate the wake up call attacks with Melatonin. It's an over the counter sleep aid available at health food, vitamin or drug stores. Start with 9 mg about 30 minutes before bedtime. May have to adjust the dose up or down, up if it's not helping, down if you're a zombie in the morning. You might have to play with it a bit, some get the best results by splitting the dose in half between slow release and standard release. Standard release to get to sleep, slow release to get ya thru the night.

Follow this link  to the medications section of this board and read the post "Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Also, here's a listing of some docs other CH'ers have used and recommended in the Mass. area. Might be worth hooking up with one of them to try some new treatments.

Boston:
Dr. Elizabeth W. Loder
Brigham and Women's/Faulkner Neurology

Dr. James Arthur Morrill (PCP)
Massachusetts General Hospital

Lawrence:
Dr. Andreas P. Schoeck
New England Neurological Associates

Lexington:
Dr. Peter J. Zuromskis
Beth Israel Deaconess Healthcare- Medical Care Center

North Easton:
Dr. Albert Ackil

Norwood:
Dr. Bryan Lieberman

Weymouth:
Dr. Paul S. Blachman

Joe

OMG, thank you all so much!!!  You have no idea how good I feel reading this..  HOPE!  Actual HOPE!  Like, I feel so stupid for suffering so long without trying much, but feel so great there is hope and things to try..  Finding this board may be my luckiest day of the past decade (besides my kids being born I guess!)

Like you all know..  there are so few people with it.. that no one understands!  for years, I thought I was weak and low tolerance to pain..  about 5 years ago I broke an ankle falling on a ladder and the doctor was in shock I walked into the ER after driving myself.. I honestly think my pain threshold was built on these cruel horrific bombs we suffer from.  The ones that have me scared to go to bed, scared to do a lot of things.. 

One other question..  I noticed when I am in a cluster cycle there is one thing that brings them on almost 100% of the time (so hence, I stopped).. When I am in a cycle, it's almost always middle of the night bombs.. but if it's in a cycle and I do rigorous exercise (I typically use the treadmill or stairmaster at a gym)..  a crushing headache is amost immediate.  Like I'll get in the shower and by the time I get out my right eye is swollen 95% shut and my nostril is running and the pain is piercing..

I have read nothing about this happening, and because I am nuts, a few days ago even though my cluster cycle started last week I went and did a light 30 minute job on the treadmill at about 1pm at lunch.  Again, didn't even make it out of the locker room before I was debilitated.  I spent the next 90 minutes pacing around the streets of boston drinking Mountain Dew holding ice to my head. 

Has anyone else experienced this?

Has this ever happened

There are a few things that tend to trigger CHs. For most people in cycle, alcohol is something to avoid as it can guarantee a hit (some are lucky in that it doesn't). Other triggers are not as frequent but they can be things like stress level changing (either increasing or decreasing), smell of organic solvents or fumes, getting too hot, exercise, missing meals, getting dehydrated and similar things.

It's fairly rare for any food to trigger CH, but not impossible. If you keep a headache diary then you may be able to identify if it is a trigger for you.