I just got referred to a neurologist after seeing my GP and being sent to the ER last week.  I have a previous diagnosis of complex migraine but now I am being diagnosed as CH.  I do get migraines and there is a big difference between those attacks and what I am experiencing now. 

The last time I went through this - about 3 years ago - the neuro was a jerk.  I presented him with a detailed list of when the attacks occurred, my symptoms and how long they lasted, what I ate and drank within 24 hours of each of them, which meds seemed to work at various times, etc.  I had gone on webmd to try to get information that would help me understand and get out of the hell I was living in - the site recommended I make a detailed list for my physician, so I did. He expressed his concern that webmd was making people think they could diagnose themselves (which I was not doing) and that I should leave the observation and diagnosis process up to the professionals. He also mentioned that my detailed recordkeeping indicated that I had too much time on my hands and perhaps a hobby would help me focus on something other than my headaches.

As for a diagnosis, he did the usual CT and MRI (which revealed nothing) then prescribed Inderal and Imitrex. He told me to have more sex (yes, he actually said that), avoid chocolate, pizza and red wine (which I was already doing) and take my meds.  Well, eventually the headaches went away but now I know that my cluster cycle had ended.

Now that I am back in it, I am very anxious about seeing a new neurologist.  I have Blue Cross Blue Shield but I was surprised by how many of them do not take my insurance - the first three neurologists I was referred to refused me.  Now, I have an appointment pending but I am unsure how to approch this one.  Do I give him the detailed information or do I just tell him what is going on and hope he has a clue? 

I'm sure I am not the only one who has had difficulty of this sort.  Is there any advice you can give me in this area?

Thanks,
Carlyn

Your best move is to know as much as you can yourself about CH treatments such as Oxygen, Imitrex, etc. Even "Headache Specialists" don't see very many CH patients compared to migraines. Be prepared to educate the Dr. if needed but carefully.                   ,Don

These two items list the mainline treatments for CH. If this new doc is not playing in this field, it suggests he not experienced with Cluster.

But ask--directly--about his experience with Cluste. Any doc who would avoid such a questions is suspect!

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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If you conclude that you need to look elsewhere:


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.

The new neuro was a jerk.  When I first met him, he asked me what brought me in - I said he came highly recommended by the doc that diagnosed my CH and I was glad to start working with him so I could get some relief. 

His response was that women don't get CH and that I am "sleeping wrong".  He said my job is causing the headaches and advised me to quit. (Part of my work entails ropes course facilitation which involves being outside in bright light and heat wearing a helmet and looking upwards as I belay climbers). The argument that when these issues began I did not work in this capacity seemed to make no difference.

I showed him my past and present MRI and CT scans and all the CH information I was able to print.  He tossed it aside without even a glance, commenting that "this was a waste of time and money". 

Sensing my frustration, he then proceeded to show me a book of thank you notes from people he helped recover from headaches. 

As for treatment, he told me to buy his special patented neck brace and pillow, increase my Inderall, take more vitamin D and I would be fine.  He said when the pain starts, just have my husband push as hard as he can in the soft spot at the base of my skull on the side of the pain for 2 minutes and it will get better.  When asked "what if it doesn't get better?', he said "It will."  He said I could come in for a cortisone shot if the pain ever gets really bad during office hours.

WTF???

Inderall is for migraine.  I get migraine.  Hence the existing Inderall prescription.  This is not migraine.  Migraines are a vacation in comparison with the pain I am in for almost a month now.  Inderall does not help this at all.  What difference is vitamin D going to make? How is mashing the base of my neck going to make this better?

Out of desperation, I tried it anyway that night.  I do not recommend this approach.  I got ill from the pain - which did not go away until it was good and ready - and then my neck hurt like hell for 3 days afterward, making it all just that much worse. 

I found a nero on the OUCH website that is about 75 miles away - I am seeing him on Thursday.  I sincerely hope things are different with him. 

Kushka

I feel your pain I've seen alot of p.o.s. doctors,  but your doing the right thing just move on to the next.  Hang in there and dont give up,   Phil 

The guy is needing a firing.
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Linda!!!!!! Women do get CH.
Keep your chin up and dont let some arrogant dumbass get ya down.
all the best
the bb