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jonathonquil
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Happy birthday.......
« on: Aug 7th, 2005, 10:19am »
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The thing crawling around inside my head turns 4 years old on August 24th and the only thing I know for sure is that I want to abort it before it forces me to abort myself.  Sad
 
I have a problem and I hope you guys can help me somehow. According to my Neurologist I have cluster headaches, however, my symptoms sound nothing like the testamonials i've read on this or any other webpage. I have very little pain associated with what I'd refer to as the 'sensation' in my head. Instead its like constant pressure-like sensations trying to push their way out of the crown of my head and down my forehead towards the bridge of my nose. At the same time the sensation also feels like something trying to push its way into the crown of my head. This sensation is chronic. Its there when I go to bed at night and there when I wake up in the morning. Every day. All year round. Although there isn't much pain (it only gets painful during highly stressful periods) the constant pressure continues to wear me down like the tide wearing away a rocky surface.  Sometimes I feel like I can't take it anymore and want to drill a hole in my head and release the pressure. It never ends, it is totally unrelenting and the medication i've been given doesn't do anything.  
I don't want to continue complaining, cause from the sounds of it you people with these cluster headaches that cause horrible pain have it alot worse than I, so i'll stop here.  
All I really want to know is 1) if anyone has a similar condition to me 2) if I really do have cluster headaches (ie is it rarer form that still falls under the label of cluster headaches) and 3) is my Neurologist incompetent and lazy.  I won't go into the origins of my sensations unless anyone really wants to know, because it isn't that relevent as all I want to know is if I really have cluster headaches or not.  I just want anecdotal evidence, the medical profession doesn't seem to want to explore this anecdotal evidence so i've got to try to find a solution myself it seems.
I am so sick of doctors, they don't seem to have any real idea about what I have, what i'm going through and they don't seem to care.
 
Thank you for your time.
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unsolved1
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Re: Happy birthday.......
« Reply #1 on: Aug 7th, 2005, 10:35am »
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It doesn't sound like you have cluster headaches. Cluster headaches are not a constant pain 24/7.
 
If you're not happy with the pain relief your doctor is providing, I suggest you get another doctor (or at least a second opinion).  
 
Don't give up. find out what is happening and find some relief.
 
Goodluck
 
PF Wishes
 
UNsolved
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Sean_C
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Re: Happy birthday.......
« Reply #2 on: Aug 7th, 2005, 11:03am »
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Whatever you have it doesn't sound commfortable buts its not CH. Get a new nuero definately, the one you have now is a quack.  Undecided  
 
Keep us posted when you can.
 
Sean....................................
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nani
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Re: Happy birthday.......
« Reply #3 on: Aug 7th, 2005, 11:15am »
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Hi Jonathan, has your dr done any tests to rule out other causes? Like MRI/MRA or CTscans? If I were you, I'd find a dr who really wants to find out what's going on. You don't appear to have "typical" CH. Please look into it further, and yes, let us know how things turn out.
pain free wishes, nani
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Re: Happy birthday.......
« Reply #4 on: Aug 7th, 2005, 5:08pm »
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If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:  
 
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
 
Yours does not sound at all like clusters yet it does sound like a bitch.
 
Good luck my friend
 
Eric
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Re: Happy birthday.......
« Reply #5 on: Aug 7th, 2005, 7:06pm »
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Thanks for the prompt reply, the link and words of encouragement.
 
I've had both a CT scan and an MRI and they've produced nothing to indicate anything structurally wrong with my brain. My Neurologist said someting about the expansion of blood vessels in my head, but like most doctors they don't take the time to explain these things properly. Their communication skills are on a par with their hand-writing Smiley
 
I'll definitely make my way through that journal of headaches, thanks again for the assistance.
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Re: Happy birthday.......
« Reply #6 on: Aug 7th, 2005, 9:08pm »
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I started taking Lithium about 3 weeks ago. Since then I have had the exact pain a couple of times a week. It feels like a goblin is trying to escape from my head. I also have alot of pain in my eyes. It is not constant, but it does last for hours and hours and hours. I am gong to check with my doc about this on my next visit. I have been diagnosed with clusters by 2 doctors and an ER nurse. I do have all the symtoms and have for about 2 years. This is a new pain. Imitrex works. O2 has only worked once. Best wishes,
 
Brandi
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Charlie
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Re: Happy birthday.......
« Reply #7 on: Aug 7th, 2005, 10:25pm »
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Sorry you are getting hit with such pain and I'm glad there seems to be nothing structurally wrong.  
 
The thing about clusters is that you cannot lie down when having one and they will wake you out of a cold sleep.  
 
Just my observations and let us know what else you learn.
 
Charlie
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jonathonquil
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Re: Happy birthday.......
« Reply #8 on: Aug 8th, 2005, 5:45am »
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"It feels like a goblin is trying to escape from my head".
 
Those were almost the exact words I used when I was trying to explain it for the first time to my GP 4 years ago. I initially thought I was crazy, that I was having some sort of psychotic episode where I was imagining something trying to rip its way out of my forehead.  
Mine was also related to the ingestion of substances, but mine were illegal substances (thus adding to my fear that maybe the drug I took had given me a psychotic episode).  I'm now fairly confident that it isn't psychological because i've had it for so long and because it causes other secondary physical problems that cannot be explained as mere psychological manifestations (ie Freud's patient Anna O).
I like you get alot of pressure behind my eyes, i'm paranoid that my retina's are detaching. Its horrible.
 
 
 
 
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Re: Happy birthday.......
« Reply #9 on: Aug 8th, 2005, 10:35pm »
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There is a possibility that you may have Hemicrania Continua, a haedache that is covered quite well in the perviously cited document.
 
If you think it might be Hemicrania ask your Neurologist for a trial of Indomethacin.  Indo is a diagnostic for Hemicrania as it stops it cold within a couple of days.
 
I have Chronic Hemicrania Continua and Indo stopped the pain cold.  I did not have the sensations you describe.  Mine were more like Cluster symptoms that weren't as painful but everyone is different and the Indomethacin can't hurt you if taken properly.
 
It's worth a shot!
 
Mike
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