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Cluster Headache Help and Support >> Getting to Know Ya >> Not sure if I'm doing this right or not.
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Message started by Jordyn on Aug 14th, 2011 at 3:07pm

Title: Not sure if I'm doing this right or not.
Post by Jordyn on Aug 14th, 2011 at 3:07pm
Hello. I'm new here. I'm 15, and I've been having cluster headaches and migranes since I was 3 years old. I'm from Battle Creek, Michigan. I have had 6 concussions, not sure if that has to do with anything or not. I used to go to a neurologist until she gave up on me. I take tylonol when I need it, but it just dosen't work. I am on a migrane pill too called fioricet. It dosen't work for a cluster headache. When I get a cluster headache, I get it behind my left eye, and I lose vision in my right eye. The pain makes me want to rip my hair out. I don't know what to do anymore for the pain other than to go to the emergency room, and even the medicine that they give me there dosen't take the pain away fully. Please excuse any misspelled words, I have a migrane right now.  :-/

Title: Re: Not sure if I'm doing this right or not.
Post by vietvet2tours on Aug 14th, 2011 at 3:25pm
You need to see a headache specialist.

         Potter

Title: Re: Not sure if I'm doing this right or not.
Post by Jordyn on Aug 14th, 2011 at 3:53pm
Isn't that the same thing as a neurologist? She gave up on me. Tryed me on a ton of medications, and none of them worked. Well. Topamax did, until it irritated my skin.

Title: Re: Not sure if I'm doing this right or not.
Post by vietvet2tours on Aug 14th, 2011 at 4:06pm

Jordyn wrote on Aug 14th, 2011 at 3:53pm:
Isn't that the same thing as a neurologist? She gave up on me. Tryed me on a ton of medications, and none of them worked. Well. Topamax did, until it irritated my skin.

Nope not the same.

         Potter

Title: Re: Not sure if I'm doing this right or not.
Post by Jordyn on Aug 14th, 2011 at 4:10pm
Okay, thankyou so much  ;D

Title: Re: Not sure if I'm doing this right or not.
Post by Bob Johnson on Aug 14th, 2011 at 4:15pm
First, headaches is a more complex group of disorders than is generally appreciated and, secondly, we have studies which show just how little training/experience most neurologists have in this area. These pages are full of stories who have wandered about for years trying to find a doc who could treatment them effectively: Why we push for a specialist, if at all possible.

So,

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 Login or RegisterEND 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 Login or RegisterEND PRINTPAGE 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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.
===

Hope you will stay with us and ask questions, give some reports on how it's moving re. finding a doc.

See the PDF file, below. These are the major meds used to treat Cluster. You can print out this article and use to discuss options with any doc you see and, if you don't see some combination of these meds coming at you, begin to ask whether you have the right doc or not.






http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: Not sure if I'm doing this right or not.
Post by Jordyn on Aug 14th, 2011 at 4:22pm
Thankyou guys so much, I'm glad to be on here. It's amazing to see that people can understand what I'm going through, and are here to support me. Again, thanks so much (:

Title: Re: Not sure if I'm doing this right or not.
Post by Guiseppi on Aug 14th, 2011 at 5:25pm
Yeah Jordyn, your garden variety GP gets about 4 hours of TOTAL schooling in headache disorders....and there are hundreds of them. Your garden variety neuro doesn't get much more then that. That's why we push so hard to get a referral to headache specialist neuros......hopefully with one that has some experience with CH. Not a guarantee you'll get one that knows how to treat CH.....and we still strongly suggest you educate yourself and learn to be an advocate for yourself. We'll help you all we can.

Joe

Title: Re: Not sure if I'm doing this right or not.
Post by Jordyn on Aug 14th, 2011 at 5:27pm
Okay, I'm really greatfull for all of you guys (:

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