Welcome to the board. If possible you need to look into working with a headache specialist neuro. 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. They have started you on Verapamil, which is the most common first line prevent. It takes up to 2 weeks to begin working as a prevent. Some have to go as high as 960 mg a day to get relief. Topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.
2: A transitional med. Most prevents, including your verapamil, will take up to 2 weeks to become effective. He whould have put you on a prednisone taper, from 80 mg to zero over a two week period to give you a break while your 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 the meds section of this board and read the post "
123 pain free days and I think I know why." Iit’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. A really strong cup of coffee will do in a pinch.
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
As far as figuring out what causes it, you'll drive yourself crazy there. 33 years and I still don't have a clue what starts or ends my cycles. Your breathe strip story is similar to several of mine. I "cured" my headaches by giving up coffee, they went away for 4 months, gave up using Q-Tips on the affected side, they went away for 4 months. Looking back I now realize the cycle was ending on its own. It makes the whole cause and effect thing so hard to figure.
While on cycle, do keep track of your triggers. For me, these are alcohol, (very common on cycle trigger for CH'ers) sleep cycle disruptions, sustained stress and extreme hunger. Avoiding these triggers won't eliminate hits, just reduces them.
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
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