No one knows for sure yet. The most prevalent theory is we have a defective hypo-thalamus gland which helps to explain the patterns many of us experience, same time each year, same time for the attacks each day.

All that means stop looking for a theory as to the WHY! It'll drive you nits...where most of us happy folks already reside!

That being said lets start with an overview, are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 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

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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.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." 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 a long read, worth the time.

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

My CH developed a pretty specific pattern in my 20's,  2 cycles a year, spring and fall, 8-12 week cycles, usually 2 attacks a day. I was unusual in that I never had the wake up attacks. In my 40's they went all over the place. 8 month cycles, up to 18 month remissions.

If you're  not already keeping a headache diary, start one. When they start, how fast they build, how high the pain level builds, how long it stays at peak, describe the pain itself; stabbing, throbbing, boring, etc. , how fast it goes away, anysecondary syptoms, tearing eyes, runny nose, auras, any triggers you have identified, foods, drinks, environmemntal, how any meds affected the attack, the more details the better.

I'd really look at the Batch Regimen, the vitamin D-3 regimen, as it seems to help both CH'ers and migrains. And do try to get a referral to a headache specialist neurologist. Headaches are a unique disorder. GP's get about 4 hours TOTAL education on all headache types at doctor school. Garden variety neuros not much more. It really helps to get referred to a specialist.

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

Click on this link and take the quiz. The answers will help whoever you go to in getting an accurate diagnosis.

Joe

Thanks for the feedback, I'm going to start a diary ASAP.
With me being a driving instructor I've got a diary on the go anyhoo so I should be able to adapt to it quite easily. I had 3 attacks yesterday which was quite worrying normally it's 1 a day at it's worst, I slept like a log last night and I've had nothing today, I hope I get nothing tomorrow as I'm going with friends to Alton towers ( the UK's version of Disney ) I really need a nice break. I think I'll make an appointment to see my doc next week and request a noodle specialist in the hope of getting somewhere..... Thanks again for all your support as this is some scary sh*t.

I think it has to be a problem in are DNA or something because there are chronic and episodic sufferers. I get so mad because it something that is sooo painful and so depressing to have and yet so little research is being done.