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jodie
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Hi, new to the board
Mar 3rd, 2013 at 1:45pm
 
Hello everyone,

Not sure I am posting in the right spot.  Just wanted to take a moment and introduce myself.  My name is Jodie, and I am a 54 year old female living in California.  I began getting cycles of cluster headaches about 2 years ago.  (aug '10, oct '10, jan'11 ) about 2-3 weeks each cycle.  Always hit the exact same time in the middle of the night (1-2am) and always on the right temple side with pain running down my face.  I get up, take some maxalt (migraine meds) and some excedrin - lay down with a hot compress on my face - and generrally can get back to sleep within 45 minutes.  I generally wake up headache free all day until the cycle starts again that night.

As quickly and without a warning of them coming on - they disappear.  The left me for 2 years, and a cycle began again in early February. It is still going on - It is still exactly the same headache at basically the same time.  It perplexes me - I have not see a neurologist or headache doctor, just working with my primary doctor who is a gem. 

I am starting to wonder if the headaches will go away and am beginning to have anxiety at night when it is time to sleep.  My sleep had not been great over the past year, menopause, heart palps and anxiety at night - what a mess I have become...

I take a fairly regular vitamin regiment of vit d, omega 3, magnesiuim and multi vitamins. 

i guess my questions are - is there anyone out there like me?  I know this mainly affects men, but any women out there - can you share some successes and wondering what the next things I should talk with my doc about.

thank you for taking the time to listen - Jodie
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Bob Johnson
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Re: Hi, new to the board
Reply #1 - Mar 3rd, 2013 at 2:22pm
 
Commonly, Cluster emerges in the teens to 30-40s and then taper off around 60-70s. Onset at our age raises the question of another disorder which mimics headache as having developed.

Since this issue now raises diagnostic questions beyond that of most docs, would suggest you seek a headache specialist to work thru to a diagnosis. Self-treatment is not safe.
==
Print the following and see what your presen doc thinks.


Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
====

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. 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.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.
====

Overall, headache disorders are far more complex to diagnose and treat. Not too many years ago Cluster folks often consulted multiple docs over several years before finding knowledge/skill, i.e., take the issue seriously.





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Bob Johnson
 
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kika
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Re: Hi, new to the board
Reply #2 - Mar 3rd, 2013 at 4:35pm
 
Hi Jodie

Sorry you need to be here, but welcome. It was an amazing resource for me when my CHs started 12 years ago and still is today.


I don't know how many women there are here, but am always surprised when I see one besides myself as I know that statistically men get CHs more frequently than we do.

I totally hear you re: anxiety in anticipation of going to bed. I have only ever had one cycle when the CHs woke me. For me, onset is always within 1 hour of waking and often 12 hours exactly again after that. The fear starts as soon as I open my eyes....

The best piece of non controversial advice I can give a newbie is to get your MD to order O2 for you ASAP and get an Optimask. It literally changed my life.

Best of luck to you. Take care.
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« Last Edit: Mar 3rd, 2013 at 4:36pm by kika »  
 
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wimsey1
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Re: Hi, new to the board
Reply #3 - Mar 4th, 2013 at 9:04am
 
Hey Jodie, and welcome. As Bob has posted, I would urge caution in determining you have CHs (you wrote you have had them for 2 years) before a diagnosis has been given. Diagnosing CHs is sometimes a lengthy process since there are no definitive tests. Too many other things can mimic our experience and symptoms. So please do follow up by getting an appointment with a good headache neuro. You'll be glad you did. God bless. lance
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