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        Cluster Headache Help and Support >> Cluster Headache Specific >> Dr bailed now what???
        
(Message started by: jc112521 on Sep 23^rd, 2007, 9:03am)

Title: Dr bailed now what???
Post by jc112521 on Sep 23^rd, 2007, 9:03am

After a 14 year hiatus from clusters..they are back. My last cycle was in 93, and this time is absolutely brutal. I am on all the meds.. predisone, verapamil, lithium, O2, and the newest edition.. Imitrex injections (a god-send).

I was seeing doctors at the NE Center of Headaches, in Stamford, CT.. my last appointment, 2 weeks ago, I was told that the founder Dr. Sheftell was loaded with cancer and the center was making some changes... they made another appointment for me for next month. Monday, I receive a letter from the center to come pick up my files as the center is closing. I just had an MRI and blood work done.. I picked up my files and asked if someone could tell me my results... "Nope-no one here to give that kind of information!" WTF they did recommend some doctors, but I was told by the center the one closest to me likes to use botox alot??? Not sure what that means, if anyone can enlighten me, I would appreciate it. In one of my previous posts, I explained how I am still getting 1-2 headaches a day even with all the meds, they have actually calmed down, but I have the shadows. My original doctor was not happy that I was still getting headaches and ordered bloodwork to see the lithium levels, the plan was to either up the lithium or go on depakote. Now, I have the bloodwork results, but can't read them... I guess I will make an appointment with botox man and see where this leads. Ahhhh the madness never ends!
Janet

Title: Re: Dr bailed now what???
Post by DennisM1045 on Sep 23^rd, 2007, 10:13am

Janet it is hard enough to fight the beast with a good team in your corner. Loosing that team in your time of need has to be very frustrating not to mention frightning. I'm so sorry.

I have heard of botox being used to treat CH. There were several threads on it in the meds section. Use the Google search box above and select ch.com.

Hopefully you'll find a good Dr soon. I would think that your existing team recommended the best alternative they could think of. If you had faith in them then have some faith in the reference they provided. I'm sure Dr Sheftel put some thought into it.

I hope you catch a break soon. It sounds like you could use one.

-Dennis-

Title: Re: Dr bailed now what???
Post by Bob_Johnson on Sep 23^rd, 2007, 10:19am

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. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html 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.