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New to the group - still learning what it is. (Read 1235 times)
Ginger
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New to the group - still learning what it is.
Apr 21st, 2014 at 11:01am
 
Hi, I have only been dealing with this for about 2 weeks.  I went to see my doctor and he suggested this may be what I am dealing with. 

I felt it was silly at first and didn't want to go to he doctor but after a few weeks my husband insisted.  He suggested that it is actually creating a noticeable impact at home and work.  He says that even when I try to mask the headache he can tell it is there because my face gets a little puffy and my eye (on the side that really hurts) starts to water.

At first the headaches were almost constant (I believe) but I  took 2 BC powders and it would make it go away or make it mild.  On Friday the doc gave me Prednisone (10 mg) and Hydrocodone (5-325 MG).  I find that this path I see the headaches as coming and going.  Before they were clockwork and consistent but now they are more random and  do go away for large swaths of time.

I am still not sure I understand what is causing them - too much stress, not enough sleep, not enough exercise (I recently stopped running because we have been doing a lot of work on the house), etc.

Some things on here suggest that they may go away entirely and other things suggest that this may be a chronic condition.

I guess I am at the beginning of my journey and trying to figure it out.  I think my doctor may set me up for an MRI this week just to be on the safe side.  I guess I will just keep following his instructions and researching the subject. 

I really appreciate the website.  It helps me understand a little more about what is going on and maybe I'm not completely crazy (yet).
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« Last Edit: Apr 21st, 2014 at 11:02am by Ginger »  
 
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jason1212
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Re: New to the group - still learning what it is.
Reply #1 - Apr 21st, 2014 at 12:23pm
 
My 2 cents.  Your absolute #1 priority is getting a proper diagnosis otherwise, you're just shooting in the dark.  In the menu on the left side of this page there's a link to a "cluster quiz" take it. Lastly, pray very hard that it is something temporary and not CH.  Good luck to you!
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Bob Johnson
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Re: New to the group - still learning what it is.
Reply #2 - Apr 21st, 2014 at 1:16pm
 
Sorry that you had to find us but, given the nature of Cluster, we'll be chatter for a long time. (Sorry...)
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Let's get the homework done first:
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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Do take the screen test, left of this page. It's NOT a final diagnosis but, if you get a positive score, then I'd suggest you find a headache specialist.

What you doc has give you suggests that he isn't skilled/experience with complex disorders. No fault of his for most docs, even neurologists, receive very little education/training in a complex area of medicine. At least explore your options.
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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.
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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.
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IF you have Cluster, not yet established, don't be surprised or concerned if your pattern of pain degree, location, duration, etc. changes over weeks, even a coupleof years. It's just  the nature of the disorder but can be confusing and troubling.

Treatment of often complex and requires, many times, changes in meds over weeks to months.

What these last two para. say: LITTLE is known about Cluster; no "cause" yet identified even as the processes are becoming a bit clearer. This is one of those frustrating disorders which we often control but can't eliminate/cure.

Leads to a major survival skill: learning about; willingness to patiently try different treatments; learning how to keep you emotional responses undercontrol when your're hurting and frustrated. Most of the folks you'll find here have gone down this path with decent success and we still have a good life. So, please try and develop your patience! And it's a good argument to read alot here. May not make full sense at first but you'll be building up layers of knowledge which will help as time passes.
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Medical treatments for Cluster have changed over time, reflecting research being done but, for now, print out the PDF file, below. Use it as a discussion tool with any doc you see (and can be used to evaluate how up to date they may be). These are the most commonly used medss with some evaluation of effectiveness.
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Finally, until you get settled with a doc for long term care, keep posting your messages in the same section where you are now. After your settled and starting treatment, shift to the med/therapies section and. Really important that we be able to follow a single thread/location for your posts or else it's very hard to see continuity in your developing experience.
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Bob Johnson
 
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wimsey1
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Re: New to the group - still learning what it is.
Reply #3 - Apr 22nd, 2014 at 8:43am
 
Hello Ginger. Sorry you had to find your way here, but welcome. As has been suggested already you need a firm diagnosis. I would also recommend you take the Cluster Quiz at left and bring the results with you. At the very least it's a way to organize your symptom report to the doctor. Watch out for that aspirin powder, too. It can help in the beginning but I took so many I gave myself an ulcer. And if this is CHs, and you are in the early stages which can be random, you will find narcotics are of little use and can become problematic. There are ways to deal with it once you know for sure what's what. Keep us in the loop. blessings. lance
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krkr8m (Sean)
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Re: New to the group - still learning what it is.
Reply #4 - Jun 12th, 2014 at 4:53am
 
I'm new here is well but not to CH. Best of luck finding what you need so that you never have one again. Chances are this is just beginning so get things worked out as quickly as you can.

Keep moving forward!
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