Hello everyone!!  I was diagnosed with ch in Jan 2010, but my cycle started on Nov 16, 2009.  Since then I have been on so many medications (verapamil, timmerol, topimate, depakot, migranol, etc...). Most of the medications I was on at the same time.  I also spent a week in the hospital with iv drugs.  Since this started I have not had much release.  I am currently on medical leave and will probably lose my job in a few weeks due to not being able to return to work. 
I am at a loss at this point.  I am looking for a new neurologist since mine doesn't seem to be able to help.  Can anyone offer any suggestions on new ways to try to fight this thing?! I have stopped living my life and don't want to be like this the rest of my life.

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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Suggest you print these abstracts and give to your doc.

Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

The only advice I can add is "an educated CH'er hurts a lot less." As hard as it is to do now, pay very close attention to how each med affects you. Learn what works best for YOU. Continue to read what has worked well for others here on the board and take that info to your neuro. And DEMAND oxygen. I'm a 32 year episodic sufferer, I abort my attacks in 6-8 minutes just huffing 02.

Welcome to the board.

Joe

I can't add anything except to hang on.  You can get relief,and we'll do all we can to help you get it.  There is a LOT of great info available here, and hundreds of years experience (collectively).  Probably the biggest thing for now is what Emma suggested about a diary.  Especially with going to a new Dr.  Knowing what has been tried and in what combinations, what the results were, both good and bad, and what ideas YOU would like to try.  Many of us have found we have more knowledge of CH than does our Dr and we can to a large degree self-direct our treatment.  As Joe said, "an educated CH'er hurts a lot less."

Jerry

You doc/meds problems are too common with doc who lack education/experience with complex headache disorders: why we are encouraging finding a specialist!

Im up to 720 mgs a day for verap,i use the suma shots too, i cant work either,im a chronic head, i know it can be frustrating.Take it one day at a time,thats how i do it


One Love

The V.A.

I own three O₂ptimasks - one for home, one for the car, one for the office. Best oxygen-related investment I ever made.

I hope by now you've read the O2 link on the left. You can also search the term oxygen for this site for threads relating to its use. From what you've said, there is much room for improvement in how you approach O2 as an abortive. Nasal canulas are next to worthless, and a nonrebreather mask is vital. O2 therapy as an abort is not as simple as just hooking up to any old oxygen source and breathing normally. The equipment and breathing have to support hyperventilation for the fastest and most effective aborts. This was a huge revelation to me when I started on this site. Check it out, you'll be glad you did. Blessings. lance

I can't thank any of you enough!!  All of your posts make me feel empowered!!!!  I am off and running now with all of this information!!!!!

Welcome to the board...another one of those women faking CH to get attention!

You'll find there are quite a few women on our board with CH, it's definitely not a mens only club.

Visit   clusterbusters.com     they address a lot of the alternative methods of dealing with CH. Might answer some of your questions.

Joe

OMG my neurologist is a member of this board! And his name is thebbs!

When I asked my neuro why he thought I didn't have CH, he said because 90% of people with cluster headaches are men.