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Topic: hi, i'm new here and wanted to introduce myself (Read 305 times) |
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octobermay
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hi, i'm new here and wanted to introduce myself
« on: Oct 1st, 2007, 10:40pm » |
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Hi everyone, I am so glad to have found this wonderful site and message board. Now i dont feel alone anymore and can talk to people who understand. I am 25 and havent been officially diagnosed with CH, but i am positive that it is what i have been going through for the past 7 1/2 weeks now, nonstop. Ive been to the Dr and had blood tests done, diabetes tests, a cat scan, sleep study, and an appointment with a neurologist (he was no help, he only seemed interested in being done with the appointment, so i am having my doctor refer me to another). I mentioned to my primary care dr that i think i have been getting CH, and she agreed. I have tried ibuprofen, tylenol, magnesium, benadryl, prednisone, excedrin migraine, and an energy drink- nothing helps at all. At first i thought i was all alone, no one understanding how i was feeling or what i was going through (before i even heard of CH), then i found info on it online after reading a very brief description at the drs. and was so shocked that I was reading EXACTLY what I have been going through (except for the physical signs - drooping eyelid and pupil). I have been doing a lot of research and am so glad i found this site.
One big question i have is - How does the whole episodic cycle end? what does the end feel like? when I got this headache, I went from feeling fine to the worst headache i have ever had within minutes, does it end as fast, or taper off. It started August 10, and since i haven't been lower than around a 2 or 3 on the kip scale, the worst was around 8 or 9. This is taking everything out of me, i feel so exhausted when i am not in a ton of pain. i am definately not the same person anymore. i am not a person to take medication for anything unless absolutely necessary, and now i am willing to try anything. And my head feels like it is on fire, any suggestions about helping that. Thank you so much in advance for helping. I look forward to meeting all of you. 
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Rosybabe
CH.com Alumnus
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"Too much of a good thing can be wonderful!!
 
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Re: hi, i'm new here and wanted to introduce mysel
« Reply #1 on: Oct 1st, 2007, 11:10pm » |
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Hi Octobermay!!
Welcome aboard!!
I really hope you don't get diagnosed with CH but if you do, you are in the right place.
Please check the OUCH page for information about recommended doctors in your area.
http://www.ouch-us.org/chgeneral/doctors.htm
you can also take the cluster quiz at your left and take a diary of your headaches to show to your neuro in your next appointment, it will help tremendously for a right diagnosis. Don't forget to mention Oxygen to the doctor.
Hope you get the right treatment that will work for you.
Wishing you lots and lots of pain free time!!
Rosy.
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 Believing is just the beginning!
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Bob_Johnson
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Re: hi, i'm new here and wanted to introduce mysel
« Reply #2 on: Oct 2nd, 2007, 8:43am » |
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First, put your attention into finding a good doc. Many neurologists have little interest/experience/knowledge in headache (see my post on medical education in the Cluster Headache Specific setion).
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. http://www.achenet.org On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html 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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| « Last Edit: Oct 2nd, 2007, 8:45am by Bob_Johnson » |
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Bob Johnson
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octobermay
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Re: hi, i'm new here and wanted to introduce mysel
« Reply #3 on: Oct 3rd, 2007, 11:39am » |
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hi, thank you so much for the info on finding a good doctor. today i will find one close to me and call my doctor to get a referral. Thank you.
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