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Hi! Cluster headache newbie. (Read 1191 times)
orton1227
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Hi! Cluster headache newbie.
Jun 15th, 2012 at 3:07pm
 
I assume this was the correct sub-forum for my introduction.  Here it goes:

I'm 30, male, live in Dallas, TX and have an active lifestyle with constant exercise and eating right (for the most part).  About 2.5 months ago, I was having "relations" with my wife, and had an attack of the most intense pain I've ever had - writhing on the floor, but it only lasted about 5 minutes before settling into a 5 or 6 out of 10 on a pain scale.  I had that 5-6 out of 10 headache for about 8 days before it went down to a 1 or 2 out of 10. 

Ever since then I've had 3-4 "major attacks", which last less than half a day at worst.  And the rest of the time, it's been a constant dull ache between 1-5 on the pain scale.  No real relief, but often my brain seems to "forget" about the pain which is nice.  Generally the "major attacks" feel like someone's driving a railroad spike down from the center of the top of my head. 

Mid-range pain attacks last longer than the "major" ones and are centered behind the right eye and slightly above like a sinus headache.

The dull ache, lower-intensity pain headaches are all over the head and jump sides but mostly make me feel like I'm wearing a really tight hat (only the pain is deeper than that). 

So generally, the more painful the attack, the less time it lasts.  My neck has been continually stiff since the initial attack.  I also have a notable increase in confusion and a lack of focus ever since the first attack.  Some minor light intolerance.  Also, some weird sounds bother me; it's a pitch thing.  When music or my kids' voices hit a certain pitch, I feel like I'm going to lose it, rage wise.  I don't know why that happens, but it's a very specific pitch.   Easily scared/jittered if someone knocks on my cube at work.  Vertigo was present until just recently.  Also experiencing what my wife terms "tracking": when you turn your head and your perception/vision takes a bit to "catch up" (vision kind of blurs while catching up to the head movement).

I've noticed some triggers like sex and coffee and handling something straight out of the freezer, and sometimes working out on cardio exercise equipment.

I know how to take care of myself in terms of nutrition.  I drink plenty of water and eat well for the most part.

One interesting thing is that my pain seems to disappear when I lie down.  And it's almost an instantaneous disappearance.

I've had MRI/MRA/CT and all came back clear, even my sinuses were clear (which ruled out sinusitis).

Things I've tried:
1) All sorts of the usual medications (ibuprofen, aspirin, excedrin don't even lessen the pain; CoQ10 sometimes lessens it.)
2) Rest
3) Chiropractor
4) Indian Head Massages

Thinking of trying acupuncture next, or seeing if there's some weird intolerance that's affected me somehow (doing the hair sample test). 

This is so frustrating because I'd spent the last 2 years completely healthy, not once getting sick and rarely ever congested.  I spent my first 28 years of life suffering with severe asthma and allergies and experiencing 4-6 cases of sinusitis every year.  The last 2 years have been clean of any of that.  I haven't even taken drugs (for allergies, or antibiotics, never taken illegal drugs either) for the past 2 years. Then that first attack hits and I'm ruined (or so I feel at times). 

I thought maybe it's somehow related to experiences I had as a child, that it's a brain disorder thing.  As a child, I would have episodes of perceiving that time had sped up; it was like everything I perceived was on fast-forward.  But I was conscious of it.  I could look at the clock and cognitively realize that time was operating normally.  In fact, when I looked at my digital watch, the seconds were ticking off normally, but I'd look anywhere else and I was perceiving it in a fast-forward state.  Even my inner-thoughts were 8x the normal speed.  These episodes would last only 15-30 minutes, but I've never run into anyone else that had them. But there was never any ill effects or physical danger as a result of them.

So any thoughts?
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« Last Edit: Jun 15th, 2012 at 3:28pm by orton1227 »  
 
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Bob Johnson
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Re: Hi! Cluster headache newbie.
Reply #1 - Jun 15th, 2012 at 4:17pm
 
Any thoughts?   Yes. If we were good at self-diagnosis we would have our attacks under control.

This area of medicine is not a simple one. The complexity of causation and treatment is one of the reasons so many folks often wade thru months++ trying to gain control.
=====

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. 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. 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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Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Hi! Cluster headache newbie.
Reply #2 - Jun 15th, 2012 at 5:37pm
 
Whilst there are some symptoms that sound like they could be CH like symptoms, one of them does not:

Quote:
One interesting thing is that my pain seems to disappear when I lie down.  And it's almost an instantaneous disappearance.


This is a complex area of medicine and it is essential that you work with a good neurologist, if possible one who specializes in treating headaches.
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wimsey1
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Re: Hi! Cluster headache newbie.
Reply #3 - Jun 18th, 2012 at 8:10am
 
As complex as CHs may be in origin and operation, they are fairly straightforward in symptoms: they hurt like crazy, in pretty much the same way and same spot each time. They are dependable in manner, duration and character. As a rule...there are always exceptions. And they can piggyback with other disorders. So much of what you describe is outside of the normal CH experience, I would encourage you to seek the aid of a very experienced headache specialist. Good luck with this, and God bless. lance
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Batch
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Re: Hi! Cluster headache newbie.
Reply #4 - Jun 18th, 2012 at 3:02pm
 
Bob, Mike, and Lance have given you some sound advice... 

The LifeGas fill facility in Dallas at 13750 DIPLOMAT DR, has the oxygen therapy equipment and supplies you need if your diagnosis comes back as cluster headache...  I've met with them on several occasions and they understand what you're going through...

Check you PM for some additional information.

Take care and hang in there,

V/R, Batch
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« Last Edit: Jun 18th, 2012 at 3:03pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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