Hello all...
I have been trying to figure out what this awful thing is that I have been going through periodically for the past 2 1/2 years, and now daily for the last 2 months or so. Doc says its tension or migraine headaches, NOT SO!

I'm glad I found this site, I'll be checking back in.
Barb

If you are not happy with, and feel the diagnosis is wrong, then go to another doctor!  Most of us are NOT doctors, and even the ones that ARE doctors, will not diagnose you over the internet.

Find another doctor.  Do not afraid to ask the person that answers the phone, if the doctor has any experience with cluster headaches!  A neurologist that specializes in headaches is usually the best doctor to go to.

Good luck!

Chuck

Barbara the Tall,

Chuck hit the nail on the head...  Look around for another doc if you don't think he's shooting straight.  Take the cluster quiz at the tab on left then read the rest of the list from the top down.

When you've done that, come back to us with your thoughts.  You'll get more sound advice than you thought possible.  

There's less than a hand full of doctors in our group, but we've got thousands of years collective experience living with cluster headaches...

Tale care,

V/R, Batch

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.

The only thing I'll add is if you're not already doing so, start a headache journal. The diagnosis is often found in the details and a detailed journal will go a long way towards helping out the doc with your final diagnosis. Good luck!  ;)

Joe

Guiseppi wrote on Mar 9^th, 2009 at 8:14pm:

The only thing I'll add is if you're not already doing so, start a headache journal. The diagnosis is often found in the details and a detailed journal will go a long way towards helping out the doc with your final diagnosis. Good luck!  ;) Joe

Joe's right Barb. I read your post on the guest book and you really should keep a journal of your HA's, noting frequency, duration, intensity and also note how you respond to the HA, ie; walking, rockng crying, laying down, etc.  This will show a pattern and your doctor can use this information to diagnose you correctly.

Hang in there!

Jen

Thanks everyone for your postings and positive words. My doc was basically going through the motions, weeding out the regular headaches etc. My MRI was negative and doc says that indeed I am experiencing clusters. I started Pred today. So, I'll be a 6ft tall, buffed up female who's headache free.....  :-) ;)

Pred works one of 2 ways for most...it either breaks the cycle....a great thing, or it just holds the beast at bay. For me, while I'm on prednisone, I get 100% relief from headaches. As soon as I go off it, if I have nothing else on board, I get CREAMED! Now I use prednisone for the 2 weeks it takes my lithium to take effect.

If he is putting you on a short term prednisone run, you need a back up abortive plan. Either oxygen or imitrex. You might be lucky and it'll break your cycle. If it doesn't break the cycle, when you stop the pred, you could get some serious kip 10's.

Here's hoping it breaks your cycle!

Joe