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Topic: Nasal stuffiness or not? (Read 704 times) |
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3dogmom
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Nasal stuffiness or not?
« on: Nov 20th, 2004, 10:29am » |
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Have recently been tentatively diagnosed and got great info from you folks. Still not certain this is it. Got MRI with some "subcortical activity" which the neuro is looking at, got optic neuritis and vasculitis ruled out. He thinks that since I don't have the droopy eyelid and nasal stuffiness component that it's likely not to be CH.
Which brings me to another subject - it almost seems that there are so many variants to CH, its symptoms and reactions, is it a diagnosis of exclusion? I've had pain since August, intensity varies. Reading the history of posts here, I think it's likely that's what it is.
On Verapamil and indocin for three weeks now, someday it's not as bad, some days are 9's.
Thanks to everyone for all the great info.
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unsolved1
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Re: Nasal stuffiness or not?
« Reply #1 on: Nov 20th, 2004, 11:16am » |
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I don't get a droopy eyelid but I do get the nasal stuffiness.
Tell us about your pain (location, intensity, frequency, duration, etc)
Unsolved
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marlin
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Re: Nasal stuffiness or not?
« Reply #2 on: Nov 20th, 2004, 11:24am » |
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Well, I can't say I can remember anything over a 4 that didn't come along with a scorching eyeball and nasal conjestion on the affected side. I don't know about the droopy eyelid -- COMPLETELY BLOODSHOT and teary - for sure.
But ya know, apart from a tidy little diagnosis, there's hardly anything to gain from identifying the beast - unless that's the key to getting the meds approved for insurance purposes. The most important thing you can do for yourself is find the correct meds that control the pain and hopefully help you break the cycle (provided it's not chronic). Just don't waste your time on endlessly taking stuff that just plain doesn't work.
I'm on a prednisone taper and so far so good. Only reached for the trex once since I started the pred...
Good luck and hope you get PF!
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toolong
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Re: Nasal stuffiness or not?
« Reply #3 on: Nov 20th, 2004, 2:00pm » |
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Nasal stuffiness is my first sign that the deamon is on his way(and I'm right there as I type).Left eye tearing is next then the good old friggin' shadows.Let's see I'm suppose to have dinner with my wife and friends at 7:00 so according to my usual schedule I'll be at kip 8 around 7.Don't need a professional diaganosis...just a day in the life of one cursed with CH  David
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Hey,watch this!I saw it on a cartoon and I think it might work!
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yikes-another-one
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Re: Nasal stuffiness or not?
« Reply #4 on: Nov 20th, 2004, 7:35pm » |
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FLoridian has more info about this, but doctors
have documented cases
where after years of having all classical signs of CH
a lucky person loss the pain portion of the attacks.
Still on October for 8 weeks, he would get
a droopy eye and stuffy nose on one side
3-4 times a day....same time of day for the 8 weeks.
Also, they had other patient
who started out blessed without pain,
but would have the nasal thing 2 or 3 times
a year.... same time of day and what not for
a few weeks.....
and after a few years,
then he also complained of severe headaches
developing with the nasal problems.
They thought the eye drooped because of pain,
pressure or what not, and then along came
these individuals to discount that theory.
Ah well,
Back to the drawing board.
I swear this had to be bacteria related.
It seems able to mutate
every time you get a handle on it.....
wink.
best wishes for the pain free...and no more attacks
(P.S. Floridian's post was earlier this month... and had
specifice articles sited...but I didn't remember the
topic name....soooo sorry. Too many details
for my injured head.... 
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Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
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fullhead
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GET UP OFFA THAT THANG & DANCE TILL YOU FEEL BETTA
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Re: Nasal stuffiness or not?
« Reply #5 on: Nov 20th, 2004, 7:57pm » |
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Nasal stoppage definite - using 4&1 reguarly along with meds. But eye is more "squinty" or clenched shut more as a result of pain than any physical malady - distorting whole side of face much like one who has suffered from a stroke... Hope you are a freakin' clusterhead; either way you'll find much help here
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Thought I was the only Wacko till I found yall!
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3dogmom
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Re: Nasal stuffiness or not?
« Reply #6 on: Nov 20th, 2004, 10:51pm » |
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Somebody was asking about my pain - let's see. It started in August and has not been gone at all since. Sometimes it goes down to what I guess you would call "shadows" where I almost feel it and then it starts to pound when I give it my attention. I can sleep at night. The instant I open my eyes in the a.m., it's back. If it's going to be a bad one, it's bad by about 9:00 a.m. It is always in my left temple, feels like a hot nail going from my temple coming through my left eye. Hurts to move the eye when it's bad. Not the nasal thing, though. You guys are great, thanks. PF wishes to you.
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marlin
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I love YaBB 1G - SP1!
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Re: Nasal stuffiness or not?
« Reply #7 on: Nov 21st, 2004, 12:43am » |
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Well, does it feel good to lie down in a dark room without having taken a complete bottle of demerol?
If that's the case it might not be a CH. At least for me, just fighting the beast without meds used to be absolutely impossible lying down. Climbing the walls, moaning & groaning and slamming doors etc used to be my preferred formula for fighting the beast. And I don't ever remember winning. Tied a few times.
Now it's simple. O2 if I can get to it in time, and if that doesn't work, a mad dash for the Imitrex pen. I'm on pred taper, down to 40mg, and so far so good - only 1 CH and trex shot since Mon...
Wish me luck!!!!!
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PerryGR
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Re: Nasal stuffiness or not?
« Reply #8 on: Nov 21st, 2004, 7:36am » |
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Hello everyone,
According to the IHS (International Headache Society) the diagnostic criteria of CH as listed in the International Classification Of Headache Disorders are the following.
A copy of the classification can be found at http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
3dogmom unless you have any of the symptoms listed under C i don't think any doctor would diagnose you with CH. I'm not a doctor so i don't know how flexible these criteria can be. My suggestion would be to keep looking into it so that you can eliminate any other possible cause for these headaches that could be far more life threatening than CH. I hope you'll figure it out soon.
PFDAN to all,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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3dogmom
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Re: Nasal stuffiness or not?
« Reply #9 on: Nov 21st, 2004, 3:20pm » |
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Thanks, folks. I definitely have the unilateral component, and eye pain. And it's been going on so long...
And no, lying down is not an option. The dark room thing isn't possible and doesn't help.
Am taking steps to get resolution, CAT scan tomorrow, MRI a few weeks ago, probably the booby hatch next. Isn't that what they think when you have a headache they can't attach a name to?
Will keep you posted.
Best wishes.
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