Evening all,

Its great to find a group cursed with the same affliction as myself!
To cut a long story short,
Had headaches for over 10 years which have been worse the last 6 or so to the point they finally diagnosed Clusters.

I worked with a Nuro and we went through the Triptans, Verapamil, Pure 02, steroids, nerve block and everything else he could think of with no benefit.

Last year I finally went to see a Dr at Johns Hopkins Headache Clinic in Baltimore.
I had a Spinal Tap before Christmas which came back clean.
We have tried Indomethacin and I am currently just coming off Topamax as I was getting all the side effects and none of the benefits.  

I suffer from constant headaches. They never really leave. However its when the big guns fire thats when the party really gets started but you all know about that.

I have no preventive or abortive therapy at the moment and reaching the end of my rope.

I have printed the article on therapies for CH and am interested to hear what others use to control their headaches.

Going to Hopkins is like approaching the Throne of God for medicine! I assume you saw a headache specialist there, not a general neurologist. If that's not the case, really need a headache specialist. Too many good neurologits simply lack training/experience in headache.
---------

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.  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.

I've gone inpatient twice for the DHE push treatment (1mg every 8 hours for 3 days), and when I got out, the headaches returned with a vengeance for about a week. Then, just like that, nothing. For 9 months.

It might be worth a try.

Jess wrote on Feb 9^th, 2009 at 7:32pm:


Shadows?  Very common, indeed. 

Ofttimes, we distinguish here between "shadows" (a low-level CH attack that never really goes full-blown) and "afterburn" or "headache hangover" (a dull, bruised-feeling headache that lingers in the wake of a bad attack that can take hours to dissipate). 

See:

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

...to view the "kip scale" we normally use to describe the intensity of the attacks we get.

Welcome to CH.com.  I look forward to seeing your future posts.

Best wishes,

George