To start with, we need to get you to a doc who is a little more up to date on CH. The meds he has prescibed so far do not speak of a current knowledge of CH. Here's some docs in the Illinois area other sufferers have used, any near you?
Illinois
Aurora:
Dr. Karen Burgner (PCP)
Dreyer Medical Clinic
Chicago:
Diamond Headache Clinic
Dr. Robert Wright
University Neurologists
Dr. Kenneth L. Moore
Glenview:
Dr. Thomas Freedom
NorthShore - Glenbrook Hospital
Highland Park:
Dr. Trupti Gokani
North Suburban Wellness
Northbrook:
Dr. Lawrence Robbins
Robbins Headache Clinic
I’ve had CH for 36years, 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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This link will show you how to get set up with welding oxygen:
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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.
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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! I have gone pain free for 3 years on it, PLEASE give it a look see and a try.
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