Well, Hello!

My name is Brittany and I haven't been officially diagnosed with CH. I suffered what I thought were migraines in college. And after being diagnosed with Lyme, and given a round of Doxycycline they disappeared. March 1st of this year I had what I thought was another migraine, but it has yet to disappear. Ive seen 4 doctors now, been given pills, triptans, numerous Imitrex injections, and now some prednisone with toradol and I cannot stand this pain anymore. It's nothing compared to what some of you are describing. I would rate it at a Kip5 or Kip6 daily.

I work in a high school, IT mainly which makes it difficult because typing has become harder. Part of me wants to blame it on the topamax and the fact that my fingers don't do what they should now and my feet won't stop tingling. My dresser has turned in to a pill bottle holder and I turn 25 in two weeks! Just where I wanted to be. Sorry, I am a little depressed about being in bed in tears because of the pain every day.

The pain usually resides in my forehead but the last two weeks its been behind my eyes and reaching down into my sinuses. My problem is the NOTHING works. I just got a new near this week and he is confident that 3 days on Toradol and 5 days on prednisone (2x25mg) is going to do the trick. I am on day two and not convinced yet. This is the most productive thing I have done today besides work.  :-/

I apologize for intruding if these aren't cluster headaches and I am just ranting, but y'all seem really supportive and I don't really know where else to turn. I played the game of mixing meds to see what would work in college (pre-lyme diagnosis) and it was so exhausting, I don't know if I can do that again. Just looking for a little advice I guess.

There's no need to apologise because all headaches are horrible. We know this.

On the left of your screen is a button for the Cluster Quiz. Take it, let us know the result, and we'll help you every way we can.

We care.

Totally agree with Brian, there is no need to apologise as headaches, no matter what they are, are not fun at all, especially when you don't know what they are and nothing seems to be working.

What I'd strongly suggest is that you work with a headache specialist to get a definitive diagnosis as to what headaches you are having and that will then drive the appropriate treatment. GPs, even most neurologists just don't have the skills or training to work with complex headache types.

Keep reading and let us know how you get on.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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That you don't have a diagnosis is the most important thing you wrote! The broad range of headache issues is far more complex that many docs grasp and not a self-diagnosis/treatment problem.

Avoid, if possible, seeing a neurologist; heaache specialist are the best trained.
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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.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Print the PDF file, below. Nice tool to use in discussisng treatments with any doc you see.

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