Hi I'm new to this site, been a mild sufferer since my mid 20's then bout year and half ago BANG all hell broke loose.  everything in my life has changed.  Finally when from a GP to Neuro back in Sept 2008 and still going through the "can we find the right combo of maintenance meds for you crap".  This site has been a great help I have learned I have many of the same triggers as others and how to correctly recognize them.   It's also helped me not feel so alone......Thank you all for being there and your wonderful support of each other!
;D

I hope that your present docs have some knowledge/experience treating complex headache disorders. It's a difficult field for the general physician to master. If you feel the need to seek a specialist:

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.
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Suggest you print the Rozen article and use it as a tool to explore treatment options with your doc. It reflects current thinking about treatment and your docs' responses will give you some idea of whether they know enough about CH to be able to help you.

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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:

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


 

Welcome to the family Dyna

Time to kick some "Beast" butt. :)

Thanks Bob and Iddy !   Bob  you gave me lots of great links and helpful info.  I am working with the Neuro department at Hershey Medical Center, so far they seem to be cutting to the chase and I don't have any major complaints as yet.  One good thing is there is someone on call 24/7 & each Dr has a nurse who I report my Ch journals to that helps them to track the weekly ups and downs and every 4 to 6 weeks I'm back in thier office for follow up, med adjusting and brainstorm planning.  Maybe this is just a so so standard  procedure, do you think I could  be getting better care??    I'm going to be away for few days on business...Yuck I have to fly "which is a known trigger"  armed with meds but still know what the journey will mean for me.
:(

Welcome Dyna,

I'm from Allentown and there are some good neuros up here.  My current one from the Lehigh Valley hospital is a nitwit, however he does prescribe the right drugs for prevents.  I got irritated with him
when I mentioned using Hallucinogens like rc seeds.  He rolled his eyes at me and I was boiling.  He is a pharmaceutical pusher and i'm a naturalists.  I went for O2 only to get the shaft from my insurance.  Then he started with the Topamax and Verampil crap and was ready to leave.  

Best of luck to ya and I know for a fact that Hershey has a good reputation for many things.  I'm not sure about nueros, but it sounds like they know what they're doing.

Wishing your PF days :)

Chad

Thanks for the vote of confidence Chad, as my imediate area is not humming with specialists of any kind.   I am fighting a Imitrex battle though, as I believe I'm perscribed to high a dosage (current 100mg) for abortive.  I feel it should be lowered, think the high dose could be causing some rebounding for me.  Nero thinks a lower dose will cause more rebounding???  They have agreed for me to try a 1/2 or 1/3 dose a few times to see how things go, what burns me is ya gotta really press the issue, they act like I'm trying to do something illegal.  go figure :o
also wishing you a PF day!

Dyna wrote on Jan 13^th, 2009 at 6:15am:

Thanks for the vote of confidence Chad, as my imediate area is not humming with specialists of any kind.   I am fighting a Imitrex battle though, as I believe I'm perscribed to high a dosage (current 100mg) for abortive.  I feel it should be lowered, think the high dose could be causing some rebounding for me.  Nero thinks a lower dose will cause more rebounding???  They have agreed for me to try a 1/2 or 1/3 dose a few times to see how things go, what burns me is ya gotta really press the issue, they act like I'm trying to do something illegal.  go figure :o also wishing you a PF day!

Goodmorning Dyna,

I have Imitrex on hand and my GP scripts 100mg Imitrex to me.
What I would do is break the pill in half so I get two doses out of it.
My neuro gave it to me in the 6mg shot form.  I have yet to try that, however with using rc seeds, I shouldn't use any prevent or abortive drugs in the process.  If the seeds don't work, then I resort to the Trex, energy drinks, exercise, and positive meditation.  Try breaking your pill in half to save you some $$$.  Use a knife to score it down the middle and press on it till it snaps in half.  It never caused me rebound headaches, however taking more doses per day could do it so your doc could be right about that.  I only use Trex at work.  I fight the beast manually at home.  I handle pain well, but need to be away from my family while dancing.  Once an attack is over, it's like a celebration  :)

Wishing you as always PF days!

Chad

Hey Chad,

Thanks for the score and break in half info, was trying to figure out how to cut them "a not so easy" so hate to sound dumb, but what are rc seeds?  I can assume its not what is going in the bird feeders?  I have never required more than 100mg dose of Imitrex in one day course our days are sometimes longer than other people ...thank god, maybe I expect too much but that stuff once a week is too much for me, I hate the chest pains I get from it...

Hey I'm going to be away for few days on business, so don't think I was captured by aliens, just going to TX to work Yee Haw!  Flying sets my CH off so I leave the computer at home and load up on meds instead.  Drug addict passing through check point C, if your lucky enough to get searched, they find your arsonal of meds and take four steps backward like you have leprosy.

Ok I gotta run for now, hope you have a Better Day!
Dyna

Hello again Dyna,

First off if you're willing to try rc seeds, there are multiple threads on here on how to use them correctly and where to get them.  You can start by reading the info from clusterbusters (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) .  I can personal message you the site I bought them at.  I'm not as experienced with them as others, but I usually have a cycle right now and with taking the seeds one month in advance, I have no signs of a cycle thus far.  I crushed and soaked 60 seeds in white wine for 2 hours and then drank it.  I had no effects like I would have on shrooms or LSD so this a bonus.  A little nausea if anything.  Halluinogens isn't for everybody, but they work for some.  Shrooms worked for me in the past.

When I took trex I was taking 100mg/day for 3 weeks straight, however I only use it at work.  I fortunately never got the tightening of the chest side affect.  I never had rebound headaches either, but some do get this.  

Flying has effected me in the past.  I got a cluster on a flight to FL in '99 and it pretty much was the exact start of a new cycle.  Needless to say, that trip could have been more fun w/o the CH.

I hope you have a great day and i'll message you with some info.

Wishing you a PF day!  :)

Chad