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Anyone out there w/ symptoms like me?? (Read 1200 times)
xrayjd
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Anyone out there w/ symptoms like me??
Feb 4th, 2009 at 4:51pm
 
Hi, I'm Jennifer....28years old
I've had headaches pretty bad for about 15 years now. The last two years they have gotten different. Not so much worse, just different. I do get the occasional migraine, but lately I get a lot of pain on the Rt side of my face. Been to a sinus specialist and they said nothing on my CT scan that is causing my pain. He suggested maybe I was getting cluster headaches. When I get a headache it will last on and off for approx 3 days. Its not uncommon for me to go to bed perfectly fine, and wake up w/ a killer headache....again mostly in the cheek area, but sometimes around my Right eye and neck.

Just looking for anyone who can help. Thanks.  Embarrassed
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Bob Johnson
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Re: Anyone out there w/ symptoms like me??
Reply #1 - Feb 4th, 2009 at 5:41pm
 
It's entirely possible that it's cluster starting to show itself. Not unusual for a variety of uncommon symptoms during the early stages of cluster development (new experience for an individual). Your only really good option is to seek out a headache specialist.
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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. 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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Bob Johnson
 
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midwestbeth
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Re: Anyone out there w/ symptoms like me??
Reply #2 - Feb 4th, 2009 at 6:43pm
 
Hi Jennifer,

Have you taken the cluster quiz on the left side of the screen?
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xrayjd
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Re: Anyone out there w/ symptoms like me??
Reply #3 - Feb 4th, 2009 at 7:46pm
 
Yes I did....said my symptoms are similar to cluster headaches...now just trying to learn what I can about them.
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Guiseppi
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Re: Anyone out there w/ symptoms like me??
Reply #4 - Feb 4th, 2009 at 8:13pm
 
You're defienitley on the right track. If you are not already keeping a headache calendar, please consider starting one. When a headache starts, where the pain is located how hgh the pain goes, (use the kip scale on your left), how fast it reaches peak, how long it stays at peak, how fast it goes away. Differentiate actual headache from the sore head that remains after an attack.

Sounds like lots to keep track of but the actual diagnosis in headaches is in the details. That's why a headache specialist is so important. Follow Bob's suggestions for locating one! Good luck!!

Joe
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Iddy
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Re: Anyone out there w/ symptoms like me??
Reply #5 - Feb 4th, 2009 at 8:22pm
 
Hi Jennifer and welcome. You will find that the well of information runs deep and that the people here are more than willing to help you find your way to defend yourself from the beast.

Walk in Peace
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Walk in Peace

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UnderTheRadar
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Re: Anyone out there w/ symptoms like me??
Reply #6 - Feb 4th, 2009 at 11:31pm
 
Welcome- I hope you DON'T have CH!!!  I agree, keeping a daily journal is very important, because a big part of your diagnosis will come down to descriptions of things like throbbing vs. steady pain, sharp or dull, timing/length of attacks, time of day, what you ate or other possible triggers, etc...and memory after the fact is notoriously bad.  Good luck to you!
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kasmith
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Re: Anyone out there w/ symptoms like me??
Reply #7 - Feb 17th, 2009 at 10:23am
 
I have been suffering with ch for the past 9 years but migraines for 24 years.  It wasn't until the headaches started staying for weeks on end did I get worried.  My gp refered me to a neurologist who in turn wanted to rule out anything going on in my head so he has an MRI done.  Head "normal" but he then told me that I had ch.  So now I have the worst of each world the migraine and the cluster. 

I know the first time a ch woke me out of my sleep I wanted to hurt someone, and I still do.  I never really kept a journal because there was no way I could forget the pain (when it started, how it felt and what I did to get some relief). 

I hope you don't have this terrible beast.  I am glad that I found this site so that I can get some more suggestions on what to do to stop the pain and talk to people who actually understand my pain and frustration.
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