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Cluster Headache Help and Support >> Cluster Headache Specific >> My first CH or...?
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Message started by TurtleShell on Apr 25th, 2016 at 3:44am

Title: My first CH or...?
Post by TurtleShell on Apr 25th, 2016 at 3:44am
Basically up until last night I had no idea what a cluster headache even was and based on my diagnosis from Dr. Google, I think this is what happened but any info that I can find on them doesn't 100% fit what I experienced (since it wasn't sinus/ eye related).

The story goes I had the feeling of an on coming headache for most of the evening, but nothing ever came of it and went to bed. Woke up at 5am with what I thought were the symptoms of a strong headache waking me, but then it got worse. I tried to go back to sleep but I couldn't and it just got worse and worse and worse. It was basically like someone had a belt strapped around the front of my head, along my hairline where it was being sqeezed by God himself while my skin was being pulled away from my skull. Anyway, so after I sat up in bed for what felt like eternity it got a little better, but then I was nauseous and extremely hot and then suddenly freezing cold within the same minute. I was able to take a Advil migraine within a about ten minutes of thinking my brain was just going to give way and explode. Within about 10 minutes I was completely fine and went back to sleep.

I was just wondering if this is still considered a CH if it does not affect the sinuses? And if this is the first one ever, what the odds are that another one is close by?

Title: Re: My first CH or...?
Post by AussieBrian on Apr 25th, 2016 at 4:02am
G'day, and it's awful you've just been belted by a terrible headache. We know too well how frightening it can be.

With luck it was just a one-off event, and we truly wish this to be true, but if it continues it will be worthwhile keeping a little headache diary.

Please keep in touch, we care because all headaches are horrible, and we'll help you every inch of the way.


Title: Re: My first CH or...?
Post by BobG on Apr 25th, 2016 at 7:36am
Hello TurtleShell. On the left side of your screen is a 'cluster quiz' button. Please take the quiz and let us know your results.
A couple of things you said are not normally signs of a cluster headache. Such as, trying to go back to sleep. If it was a cluster attack you would have the urge to sit up or stand. Advil will not stop a cluster attack. Not having sinus pain is not a sign of not being a cluster. Nor does having sinus pain mean it is a cluster headache. Does that make sense? Sounds screwy to me.
If this was the first true cluster headache attack for you the odds are 100% there will be more. Many, many more.
Read, read, read this website. Educate yourself. Try to find a doctor that specializes in headaches. You may have to educate the doctor.

Title: Re: My first CH or...?
Post by Bob Johnson on Apr 25th, 2016 at 9:15am
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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There are many disorders which mimic Cluster but which are not headache disorders--someare quite serious. Many folks here have wandered for years before they decided to work with a skilled doc and got the correct dagnosis.

A headache specialist is your best choice; neurologists to be avoided unless they can confirm good education/experience with complex headache disorders; pain clinic & hospsigal ERs--don't think about thems. (Comments based on the experiences posted here.)

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.


Title: Re: My first CH or...?
Post by pattik on Apr 25th, 2016 at 9:44am
Greetings.

You may be on the right track thinking about CH. There are other primary headaches grouped with CH, and they are called the TAC headaches(trigeminal autonomic cephalalgias). They share the autonomic symptoms like the hot/cold thing, which I experience frequently. In fact, the autonomic symptoms are part of the dignosis. So take notes on all symptoms to help your doc with a diagnosis. In the following link, you can look around at the info regarding CH and the other TAC headaches to see some of the symptoms they share.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Good luck with your search. This forum is a great source of information to help you get started.

Patti

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