Greetings all, just wanted to introduce myself. My name is Michael, 30 years old (in april) and I live in Naples, FL. I've been suffering from CH since I was about 17/18. My attacks are generally between 7am-9am, 12pm-3pm, 5pm-8pm and 11-3am. Generally the later one comes the more intense and longer. Earlier attacks last 3-10 minutes while later are about 15-30 minutes. Usually my attacks last 1-2 weeks before remission, which lasts between 1-2 months, though occassionally I'll get a remission that lasts 6-8 months (boy are those welcomed!) Generally I get shadows first, usually it just feels like a tingle across my head, similar to a limb falling asleep tingling, or a stiffness at the top of my neck, right before it starts. All of my woes are on my left side. Usually I clench my jaw during an attack and dont speak, i have good pain management so I don't jump around or pace or anything. The after effects are generally sore jaw muscles, slight temple pressure and a drooping eyelid, for about an hour after an attack.

I actually had my first attack about an hour ago after a 1 1/2 month remission. Just want to say, overjoyed I found this place and looking forward to getting to know my fellow CH sufferers. 

Glad you found this site!!
Hope the info here will help you, it helped me.
Do you not take anything??

Welcome to the nut house, I'm glad you found us! Now the grilling begins! ;) Do you have a decent neuro who is treating you? A decent preventative and abortive regimen? Do you have oxygen yet? Imagine feeling that tingling and tightness sensation, and 10 minutes later being completely pain free. That's th beauty of oxygen. Read the oxygen info link on the left as it must be used correctly or it is not effective.

So give us a rundown of what you use, what has and hasn't worked. The beauty of this board is 10,000 years of real time CH experience. Maybe you'll drop a new jewel of info on us, maybe we can make a suggestion to help you hurt less. Welcome home.

Joe

Thanks guys. No I do not take anything. Unfortunately I haven't had health insurance until recently since 2005 due to financial reasons, but now that I have it I plan on going as soon as I find a doc. Back when I was diagnosed, perhaps due to it being 1997, or where I lived at the time, my doctors didn't know much about CH let alone give me anything, so I've kind of just dealt with it assuming there was no solutions. The water treatment makes sense though, I drink a lot of water throughout the daytime, and the attacks in the day are minimal, the shortest and least severe.

No insurance.....that sucks, ouch. Glad you've got it again. What works best for me is a 2 pronged approach. I'm episodic, cycles generally run about 8-12 weeks.

1: A good prevent. That's a med I take daily while on cycle to reduce the number and the intensity of my attacks. I use lithium. Verapamil is very popular as is Topomax. All require prescriptions and monitoring by a doctor. For me lithium will block up to 70% of my attacks.

2: A good abortive. A headache is starting, now what? Your first line abort should be oxygen. It's cheap, fast and no side effects. Imitrex injectables or nasal sprays are showing a lot of success. The pill form is not very popular as it takes too long to get into your system.

For now, buy some energy drinks, Rock Star, Monster, any containing the combo of Caffeine and Taurine. Many can abort or at least substantialy reduce a hit by chugging one of these at the first sign of an attack. I use them for those buggy shadows between attacks.

Another non prescription option is "4Way Nasal Spray" That's the brand name. Several on the board use it as an abortive and to stop shadows. They spray it in the nostril on the affected side.

With CH, knowledge is power. It's such a rare condition many doctors will never see a CH patient. That makes it your job to educate yourself and work with a doctor to manage your treatment.

Joe

Hey Braxxis,

You listen to your Guiseppe now, he's dishing out the good advice there.

Just dealing with it, assuming there is no solution is what a lot of us have done for the first several years of our CH experience, but glad you're here now.

Your experience with doctors is typical - they generally make a mockery of the hippocratic oath when it comes to CH - so you'll want to try to track down a headache specialist. Even that doctor probably won't be up on the latest, most effective method of O2 treatment though. That can be found here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For preventative there's the option of going the natural route and using sub hallucinogenic doses of certain otherwise hallucinogenic plants. This ain't quackery, really - results are promising enough to have a prominent Harvard medical researcher launching a trial (I think it is of BOL, a non hallucinogenic form of LSD). You might get some more info at clusterbusters.com, or start by searching the forum here for "RC seeds" (they're legal to mail order).

Don't use just any doc, even neurologist! Our collective experience plus reports in the medical lit. shows how poor is the level of education/experience in general practice docs.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.