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12 years in - my treatment (Read 749 times)
12yearsaclusterhead
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12 years in - my treatment
Apr 23rd, 2014 at 9:53pm
 
I currently use:

PREVENTATIVE: medrol dosepak - has been extremely effective however I am unable to get any additonal refills after my current one due to potential side effects my doctor is worried about. I have noticed that when I am on this medication, I have very few to zero headaches overnight, which is usually when they are the worst in frequency and intensity. This is the first bout I have had where I have used this, and consider it to be quite a revolution in the my treatment as it has greatly increased quality of life, ability to work, etc.   

ABORTIVE: sumatriptan injectable - dosed approximately .10mL into an insulin syringe, allowing me to get roughly 25 doses per 5qty (.5 mL) vial pack ($135 retail at costco). Anyone using the auto-injectors should stop and look into this. Far more economical and also more sterile if you are currently splitting up the auto injector refills like I used to - re-using the needle. I have used high flow oxygen in the past, with some success, however since my insurance was retroactively denied during my last bout I owe them lots of $$ and don't believe I could use that option this bout.   

OTHER: I prefer a dark, quiet, cool, comfortable room; I lay down and wrap the right side of my head and face with re-freezable coldpacks. I will press the cold onto my face until I feel pain from the cold, then let it off and eventually the pain will melt away with the cold sensation after several attempts and roughly 10-20 minutes.   

Hopefully my experience and findings over the years can help others, as I've noticed omst doctors have no idea when it comes to this affliction. I feel for all of my fellow clusterheads and wish all a PF night!

PS - I will be soon be experimenting w/ psilocybin treatments, pending a special delivery from a magical fairy.
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Bob Johnson
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Re: 12 years in - my treatment
Reply #1 - Apr 24th, 2014 at 10:55pm
 
What appears to be missing in your package is a long acting preventive which will reduce/prevent attacks AND which is not a problem for long term use.

Depending solely on short acting meds  leaves you unprotected most of the time.

If you want to stay with your present doc, then try and educate him by printing the PDF file below and using it as a discussion tool.

There are, however, advantages to working with a headache specialist.
---
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

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Bob Johnson
 
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