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Topic: My CH (Read 356 times) |
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Shash
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
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Glad I found this board. I am 40yo male in good health with occasional but severe CH.
When researching, I ran across this definition from Douglas Adam's _Hitchhikers Guide To The Galaxy_ that seemed to match my symptoms:
"The Hitch Hiker's Guide to the Galaxy also mentions alcohol. It says that the best drink in existence is the Pan Galactic Gargle Blaster. It says that the effect of drinking a Pan Galactic Gargle Blaster is like having your brains smashed out by a slice of lemon wrapped round a large gold brick. ... The Hitch Hiker's Guide to the Galaxy sells rather better than the Encyclopedia Galactica."
But I had never tried a Pan Galactic Gargle Blaster so the research continued...
My attacks:
- Always at 1:30A - 2:30AM
- Always last for 8-10 hours at constant high-level pain
- Never had attacks 2 nights in a row
- Often awakened with feeling of being super-heated but know that the room temp is normal
- Alcohol can trigger but there are many times I can have alcohol without it triggering an attack
- I play indoor sand volleyball (lots of dust) and I have seen attacks come after playing
- I suffer from hay fever
- I can normally sense before falling asleep that I am going to have an attack (I'm about 80% right)
Unrelated but noteable physical attributes
- I snore
- I always fall asleep within 10 minutes of hitting the sheets
- I sometimes wake-up 15 minutes after falling asleep with an adrenaline-like rush
- Good health, no high blood pressure, cardiac problems, etc - 6'3" 210lbs
My prevention rituals
- Tried OTC sinus meds -- no effect
- Tried immitrex -- no effect
- Tried drinking lots of water -- no effect
- Tried saline nasal irrigation -- mimimal effect
- Tried OTC nasal sprays -- sometimes work
- Now trying O2 - results tbd
My symptoms
- Usually left side
- Left nostril plugged, right fine
- Pain behind eyes, sinuses, temples
- Tightness in neck muscles and shoulders
- Sometimes jaw stiffness
- Sometimes ear congestion
- Can't lay down
- Vomiting
- Can't possibly consider falling asleep since laying down amplifies the pain by 2-3x
My Comfort Remedies
- Walking around house like a zombie
- Rocking
- Hyperventilation
- Hot bath
- Vibrating massager on neck, nose, head (electric head banger)
The best comfort ritual that I currently have is the hot bath. I can usually fall asleep in the bath tub for 20-30 minutes at a time. It does nothing for the head pain but somehow causes me to be able to sleep.
Hope this run-down is somehow helpful to someone.
-Shash
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ave
New Board Hall of Famer
She is beside herself; her favourite position
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Re: My CH
« Reply #1 on: Feb 20th, 2004, 2:39pm » |
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Welcome Shash, to this cluster board. You will find a lot of info here, not just in the posts but under the buttons left.
So read and read and read.
You may get wiser or even find a beter way to deal with your pain.
Cures we don't deal in yet.
But we're here for support.
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There is a break in reality. Do not adjust your mind.
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justasound
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Posts: 58
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Re: My CH
« Reply #2 on: Feb 20th, 2004, 2:56pm » |
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Hey Shash. Have you been diagnosed by a doctor to have CH? Sounds like sinus related headache.... I hope so. Glad you found us if you do though..
Lee
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Shash
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
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Re: My CH
« Reply #3 on: Feb 20th, 2004, 3:07pm » |
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A Doctor confirmed CH. Another Doctor disputed sent me for Brain MRI which was positive (I have a brain). I asked doctor to send a note to my wife confirming this.  I plan to see a headache specialist just to make sure. Thanks for the advice.
-Shash
on Feb 20th, 2004, 2:56pm, justasound wrote:Hey Shash. Have you been diagnosed by a doctor to have CH? Sounds like sinus related headache.... I hope so. Glad you found us if you do though..
Lee |
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PatFan
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Posts: 55
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Re: My CH
« Reply #4 on: Feb 20th, 2004, 3:18pm » |
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An 8-10 Hour CH is very non-typical, hope to God you don't have CH and your neuro can figure out what's going on. I would have to have a helluva will to live to go through an attack for 8-10 hours......
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justasound
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Re: My CH
« Reply #5 on: Feb 20th, 2004, 3:22pm » |
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Quote:| Another Doctor disputed sent me for Brain MRI which was positive (I have a brain). |
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Well youre one step ahead of me! It's been said I have a brain, but it's never been proven.
I hope you get it figured out so you can find a relief method that works.
Take care
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Shash
New Board Newbie
I love YaBB 1G - SP1!
Posts: 3
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Re: My CH
« Reply #6 on: Feb 20th, 2004, 3:31pm » |
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Yes, I have read that 8-10 hours is very atypical. I kept insisting it was sinus headeache but Doctor's don't think so. I think that my GP's just don't know enough about headaches to help me diagnose properly. That's why I'm going to a headache clinic. By the end of an episode, I am completely worn out. While you are thankful yours don't last for hours, I'm thankful I only get 1 or 2 a month.
-Shash
on Feb 20th, 2004, 3:18pm, PatFan wrote:| An 8-10 Hour CH is very non-typical, hope to God you don't have CH and your neuro can figure out what's going on. I would have to have a helluva will to live to go through an attack for 8-10 hours...... |
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PatFan
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Re: My CH
« Reply #7 on: Feb 20th, 2004, 4:22pm » |
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I hope you can find relief soon, hope your doc can help you fight the beast... take care and let us know what happens. ken
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Karla
CH.com Alumnus
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One of Many and Never Alone - Join OUCH
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Re: My CH
« Reply #8 on: Feb 20th, 2004, 5:19pm » |
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It really doesn't sound like ch. It sounds more like migraine or sinus. People who get ch that are eposodic get hit every night daily for weeks/months on end. Not just once or twice a month. That is very atypical. It is very rare to even hear of a 4 or 5 hour ch lasting. the 10 hours in atypical. Vomiting is not a typical sign of ch. It fits migraines. Migraines occur occassionally. Nothing over the counter will even touch a ch. I would be very suprised if the headache dr says it is ch.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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t_h_b
New Board Hall of Famer
primary chronic since 1999
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Posts: 527
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Re: My CH
« Reply #9 on: Feb 20th, 2004, 6:05pm » |
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on Feb 20th, 2004, 11:50am, Shash wrote:
- Always at 1:30A - 2:30AM
- Always last for 8-10 hours at constant high-level pain
- Never had attacks 2 nights in a row
- Alcohol can trigger but there are many times I can have alcohol without it triggering an attack
- Tried immitrex -- no effect
- Tried OTC nasal sprays -- sometimes work
- Usually left side
- Vomiting
- Can't possibly consider falling asleep since laying down amplifies the pain by 2-3x
- Walking around house like a zombie
The best comfort ritual that I currently have is the hot bath. I can usually fall asleep in the bath tub for 20-30 minutes at a time. It does nothing for the head pain but somehow causes me to be able to sleep. |
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All of the things above certainly do make it sound like it's NOT cluster headache attacks that you have. It certainly does not fit the diagnostic criteria for CH and I certainly hope it is something more easily treated that is affecting you. Good luck with the headache MD and on getting some relief from your pain.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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