I am sitting in tears...I cannot believe that there is actually a site for this...Thank you...Thank you...Thank you...
I feel like an @$$ whenever they hit...nobody gets it. I can't stand the pain and everyone looks at me weird when I say no to the tylenol and ibiprofin they offer to make it better..."Just take it..." "they work well.." um...no...
Right now it is close to 3am...and I am about ready to bounce my head off a sharp corner of my house...
My husband has been pretty good in trying to understand, but I sometimes feel like he thinks I am making it up...(though he never has said)
I have been to emerg. 5 times in 11 years...my last visit being 4 weeks ago...every time being some different solution...

I thank all who reads this...for letting me know its not "all in my head" as one doctor told me...

firefly59 wrote on Apr 21^st, 2009 at 4:59am:

I am sitting in tears...

Not at all an uncommon reaction, when we find out that there are other brain damaged individuals out there!


firefly59 wrote on Apr 21^st, 2009 at 4:59am:

letting me know its not "all in my head" as one doctor told me...

AH!!!  But it IS in your head!  Just not in the way that they imply!

How about telling us a bit more about you?  Where do you live (what country)?  What have you tried for preventative measures?  What have you tried for abortive measures?  Are you chronic or episodic?  If episodic: How often do you go into cycle?  How long are your cycles?

Maybe we can help you get to a semblance of normalcy.

You are NOT alone, anymore!
Welcome to the nut house family!

Chuck (the only sane one here ...)

Hi,Welcome.....don't forget there has to MD's that graduaute at the bottom of their class!

Run across guys like this.....turn around and move on to the next

Read the Oxygen Info tab on the left and begin to help yourself

All the best :).

First order of business is to find a good headache doc. Many neurologists, to whom we have been referred, have little training or experience. IF you can't locate a specialist (below), then never go to a new doc without asking sharp questions about their headache experience.
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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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Explore the buttons (left) starting with OUCH and the many internal links you will find there.
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Here are two lists of meds most often used today. If your doc isn't working from this menu, likely a good sign he isn't up to speed.
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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)
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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
===============

Get back to us with your history and any specific questions you may have.

"All in your head???"  

Wow Firefly, I am so glad you found yourself on the right path.  Most of us have our own doctor stories, but I don't believe I have heard that one yet.  I hope you find some pain free time soon...

You Know, reading this and other stories like this makes me think: why do we only have a list of doctors that can help?  Shouldn't there be a list of doctors to avoid that don't help and could potentially make it harder to get the help you need?  
Or, maybe a list of: doctors that need to be educated on CH.

It might start a trend of stories in the right direction or encourage doctors to try and move themselves from one list to the other.
Just a thought...

Thomas

The 'all in your head' opinion is more common then you think.
A GP (not my regular one) even sent me to see a psychiatrist.
When I arrived there, he had complete admission forms ready! [smiley=yikes.gif] [smiley=JAW_DROP.gif]
It didn't take him very long to toss those aside and give me the
advice: 'You're better of seeing a good neurologist.'

Lottie

You've already gotten great advice...I'll just add welcome home! ;)

Joe

welcome,

        Clusters suck!!  So i hope this makes you feel a little better knowing i got them too. Now you also get to see you really arent alone.As far as the head into the wall thing, try a ice pack on your eye next time, I never tried it lol... but it has got to be better than the smashing your head theory. Try to write a poem or a song, it will bring you some outlet.

                             Coach Bill  8-)