hi im renovation -  i have had cluster headaches from the time. I was around 14 maybe earlyer  now 53 years old.
i have been to the Michigan Headache Center in Ann Arbor MI. Henry Ford headache center  in Detroit, seen all kinds of doctors ,had all kinds of tests and scans .  taken/been given tons of diffrent meds for them. forgot most there names now. took me till about 6 or 7 years ago to fine a doctor who gave me some real long lasting relief.  Im saying a couple of years of being daily  headache free relief for the most part.  last lasting for about 2 years .now it's time to go back and see him . as the normal cure he has had me on when the attacks start is not working and i have gone 60 days without it taking affect . the normal cure for me has been a 30 treatment of depakote ER .  so monday i will be placing a call into his office for a appointment .i know it will take about a month for me to get the appointment . its my fault for waiting and i just want these daily headaches to go away again . in the mean while I just be taking over the counter meds i have learned to carry with me every were i go .and the worst part is they only work about 1/3 of the time to releave the pain in less then 45 mins from the start .  most the time as of late it taking hours to go away a mixture of asst  meds :(

'Evening.  (Well, here, anyway.)   ;)

Glad to meet you, but sorry for the reason you're here.

Sounds like you're in about the same boat as me.  I'm 55 now, and have had these things since I was 13.  Like you, I'm an episodic.  Although I used to get cycles twice a year, they've spaced themselves out more in the past 12 years--last four cycles were three years apart.

When you go to see your doc, be sure to talk to him about oxygen therapy.  For a wealth of good information to print out and bring along with you, see the yellow "oxygen info" link on the left side of your screen.  The use of oxygen as an abortive is very effective for better than 70 percent of us.

Again, welcome.  Hope to see many more of your posts.

All the best,

George

I confess much confusion over your message. You are going to a major headache center and yet are using ineffective OTC meds to abort your headaches. Are you not seeing your doc regularly? Have you been given any of the effective abortive meds which are available.

Your message conveys the absence of a coherent treatment program. How can this be?
=========
These are the types of meds your doc should have you using:


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


 

Hey Bob, I found a post of his on another thread.  Maybe it will shine some *light* on *this* post.


renovation wrote on Oct 16^th, 2009 at 7:44am:

brian hope they help you.  I personal was not happy with there care plan i was given 20-25 plus years ago when i went to them for help .things have changed a lot from those days im sure .

yes i have gone to both of these major centers and got no real help .at the one i felt like a pill popping fool .all they did was give me meds after meds to no help .and my insurance was not helping me cover the costs much. then i went to the second center and was told just use what i found worked after all kinds of testing again.
i have also found most general MD don't want to handle cluster headaches as there are so many ways to try treating them and so much reading they need to do to keep up on treatment possiblitys.

  i have a Neurologest that seems to be able to help me.  he told my personal MD to order depakote er  when ever the clusters should start back up .and if they didn't subside in a 30 day time frame for me to make a appointment to see him again .  anyway after all the meds avail i still fine excedrin works best most the time to easy the headache away for me. when the clusters do start like i have them again :(

and what always pissed me off was when a neurologest tells me  i will figure this out and then saids i need to refer you on to this guy or clinic. i have had that happen to me so much you wouldn't even dream .and when i say i have been there there like WOW ! even do its all in my history charts over the years !

There have been such dramatic improvements in the treatment of headache that the major limitation in finding them is--locating a good doctor! (next piece).
------
Medical education in headache
Posted 9/26/07, MEDSCAPE   

--------------------------------------------------------------------------------
Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc.
=========================
"Objective. To explore the extent of headache education received by medical students and residents.
Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache.
Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education.
Results. Response rates were 35% to 40%. MEDICAL SCHOOL LECTURE HOURS RANGED FROM 0 (4%) TO >5 (24%) WITH 92% HAVING NO PLANS FOR AN INCREASE IN HEADACHE EDUCATION. FAMILY MEDICINE RESIDENCY LECTURE HOURS RANGED FROM 1-3 (30%) TO >5 (34%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >5 (41%), WITH 88% OF PROGRAM DIRECTORS HAVING NO PLANS FOR INCREASE. NEUROLOGY RESIDENCY LECTURE HOURS RANGED FROM 1-3 (11%) TO >5 (64%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >10 (57%), WITH 80% HAVING NO PLANS FOR INCREASE.
Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program."

"Neurology Residency Programs
Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache."
================

Our collective experience points to the need to find someone experienced in complex headache disorders. Too many neurologists simply lack the training and experience.
----

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

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.