My name is Elizabeth and I am 37years old. I am a teacher and single mother of two teenagers. I have had CHs since I was 19 years old. I know them so well and it was such a relief to finally find some people who can understand. I try to explain that these are not "migrains" that I can just work through the pain. However, that is just what I have done until now. For almost 20 years I got these headaches twice a year and they lasted about a month getting 3-4 a week. Then I went in remission for four years. I was thrilled!!! Now they are back...worse than ever. I get 3-4 a day I have had them for almost 2 months and I am afraid my career, my kids and my boyfriend have had enough. Imitrex pills do not work. I live in Madison Wisconsin and the doctor I went to see looked it up online just like I did.  I am on O2 but I can't afford it because I go through a tank a day. I need advice, a doctor and just some relief from the pain and exhaustion.

Hi Elizabeth and welcome.

Everyone here understands what CHs are like and that you just can't compare them to migraines (although they can be annoying enough).

Whilst imitrex pills work well for migraine, they are not too useful for CH, but imitrex injections or nasal sprays work well. Although there are limits on how many you can use and are not exactly cheap compared to oxygen.

Do you have any preventives, something like verapamil, lithium or topomax?

Have you checked out using vitamin D3? Read up about it - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's well worth working with a headache specialist as most doctors, even most neurologists have limited experience of CH.

Keep reading and you'll learn so much about dealing with CH.

As Mike said, there are more effective means of controlling the beast. When you say you have O2 how is it administered? Most docs who aren't knowledgable about CHs (and that's your doc included) will provide O2 at too low a flow rate with the wrong kind of mask. We need a flow rate and regulator that is minimally 15lpm; 25 is even better. We also need a nonrebreather mask (not canulas, not a maks with little flapper valves that mix in room air) and a 3 liter bag is very helpful. With this kind of setup, I've been able to abort hits that would have gone 45 minutes in 3-5 minutes. That's a huge difference! You really need a more knowledgable doctor who is familiar with CHs. blessings. lance

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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. 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.

5. 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.

Welcome to the board, stick around here, start reading like crazy, soon you'll know more about treating CH then most doctors. Here are the doctors near you other sufferers have recommended:

Wisconsin

Madison:
Dr. Ivy J. Dreizin
UW Neurology Clinic

Manitowoc:
Dr. Donald J. DeBruyn (PCP)
Aurora Health Center

Go to the meds section and read the post "123 pain free days and I think I know why". It's a simple vitamin/anti-inflammatory regimen that's providing a tremendous amount of relief to those who try it. Cheap, good for you even without CH, certainly worth a shot.

Then visit our sister site:

Clusterbusters.com to explore non mainstream medicine treatments for CH.

Welcome home! ;)

Joe

Thanks everyone. What is so strange about this episode is that it is not predictable at all. 20 years of the same thing and now it is all over the place and today it switched sides (has happened before but not in the same episode).  I guess my right side is getting some relief.
I will look at the suggestions given.
Thanks again.

The beasts ability to morph gets discussed a lot on the board. A med that's worked for 10 years becomes totally useless. Go from only daytime hits, to only nite time hits, switching sides, one of the more frustrating apsects of the beast.

Joe