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Cluster Headache Help and Support >> Getting to Know Ya >> Another Newbie/not sure of diagnosis
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Message started by Kathi59 on Feb 29th, 2012 at 5:19pm

Title: Another Newbie/not sure of diagnosis
Post by Kathi59 on Feb 29th, 2012 at 5:19pm
I am Kathi, 52 years old, live in Ohio between Toledo and Cleveland.. I had my first of these horrific headaches just 3 weeks ago.. Some of the symptoms are exactly as everyone here describes but a few are not, so I'm confused and more than a little scared. The headache came out of nowhere at around 2 in the morning when i had got up to go to bathroom. I went from no pain to head rushing pain in a matter of seconds. All on right side, behind eye and across forehead.  Felt like a vise grip crushing my forehead. Went away in about 30-40 minutes. I went to ER the following morning cause I was sure i was dying.  They did a CT, normal. By that time it was gone so i went home.  It woke me out of a sound sleep the next night at the same time.  Same result, i just rocked in my chair, holding my head until it stopped.  Since then i have had them off and on for 3 weeks. Some days 2or 3 but other days no bad ones but i feel like i always have this nagging headache behind the right eye.  I have taken practically bottles of advil with no help at all.  Now, the things that don't fit are that I do get nauseous when the pain is really bad.  I'm not sure about the light sensitivity because it just made sense to me to leave the lights off when it happened.  I haven't noticed any of the eye specific symptoms, but didn't know to look for them till today. Any help would be appreeciated. I guess i need to know for sure so I can seek the right treatment.
Thanks.

Title: Re: Another Newbie/not sure of diagnosis
Post by Bob Johnson on Feb 29th, 2012 at 5:55pm
We can't diagnose. Sudden onset headache at your age is one sign that a full diagnostic work-up is important. In addition, there are a number of rather serious disorders which mimic Cluster headache. Another reason for a good work-up.

Our collective experience plus medical research, leads to the advice that you consult a headache specialist. Most docs, even neurologists, receive very little edcation and training in headache, and yet this is a complex area of medicine. Too many folks take multiple docs and years of searching to find the skilled person they need. So, start on the right step:

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.
====
Avoid the temptation to try and diagnose and treat yourself. There are meds which might kill the pain but which also be masking a serious, non-headache disorder.





Title: Re: Another Newbie/not sure of diagnosis
Post by Mike NZ on Mar 1st, 2012 at 2:03am
Hi Kathi

Bob has given you some excellent advice. This really is the time to consult with an experienced headache specialist to do the required diagnostic work to determine what is causing your headaches. This isn't something we can do here.

If it turns out that you do have CH then we can offer you help, advice and support using our experience of dealing with CH.

Title: Re: Another Newbie/not sure of diagnosis
Post by wimsey1 on Mar 1st, 2012 at 8:32am
Dittos everything above. And I wouldn't be so quick to say nausea, or even photophobia, rule out the possibility of CHs. Pain can cause both to be secondary to having a full on hit. Still, as you've been told, the best thing is to have a proper workup and diagnosis. IF it is CHs, then know there is hope and help. God bless. lance

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