30 Doctors in one room discussing cluster headaches......(long one)

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Posted by tracylee ( on May 01, 2001 at 14:42:07:

That was what the conferance I went to on Saturday was. The one day seminar that I spoke at was titled Forefronts in Primary Headaches. It was attended by GP Dr's,emergency Dr's and neurologists from Vancouver, Calgary, Toronto and The New England Center for Headaches.In the morning they discussed the differant types of Headaches(migraine,tension,CPH,cluster,and paroxysmal)the diagnosis of and the treatment of. After lunch there was a meet the patients portion and that is where I came in. 3 patients of my neurologist ( Dr. Robinson from Vancouver) attended, two with migraines and ME!The doctors divided into two rooms and met with the patients. I sat thru one migraine patient description where the majority of time was spent discussing fiornal(?sp) and the misuse of and the difficulty of being prescribed an adequate amount of pain relievers.
My turn now..the table consisted of 15 Dr's and they had me summarize my history of headaches since their start (when I was 17) to now (35).For an hour they asked differant questions about previous diagnosis ,treatment and the changing of my HA's over the years. 14 of the 15 Dr's agreed with the diagnosis of cluster headaches. ( the one who didn't got shot down fairly quickly by the neuro from the University of Toronto, John Admeads). They agreed on my current treatment plan ( 720 mg of Verapamil and 50mg of Sansert daily)as I am currently having some success with this. They recommended if this doesn't work then to try Lithium next, which was the plan with my neuro anyway. Next they asked my opinion one the treatment of CH and what ER's and GP's could do better for us....in the short version I told them that proper referral to a neuro, and recognizing a cluster sufferer was a big issue. Many people go years without the proper diagnosis and therefore all that time with inadequate pain relief and no preventive medication at all. I told them that many cluster sufferers avoid assistance from ER's due to previous bad experiences of being treated as possible druggies looking for narcotics (which don't help us anyway)or those who spend hours being treated for a differant type of headache with meds that don't work,while the patients are trying to explain what does help to no avail.
I did manage to leave several OUCH brochures and copies of the cluster quiz from ch.com. During coffee I spoke with several Dr's who will refer patients to the sites and take a look themselves.
Overall it was a great experience for me and a valuable one for all of us I believe. Hopefullysome of us will get an opportunity to repeat this and get more of the "patients" experiences and thoughts out there.
For those of you that don't know me, I have been around the board for the past year since I was finally diagnosed with chronic cluster HA's. Previously it was said that I had migraines, chronic daily ha's, rebound ha's etc etc...much like everyones story here. I have been on the gammit of meds from Nadolol,Amitroptyline,Prednisone,Epival,Carbmazepine,Topamax,Dhe treatment in hospital and the various abortives. As i said I am currently taking Verapmil and Sansert. My headaches have decreased to 2-5 a week but I always have the worst time in June and July.
Thanks for listening all and have a pain free day! Tracy

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