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   Author  Topic: Anyone else have trouble speaking?  (Read 1869 times)
Renee
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May we all find some pf time!  Is it summer yet?

   
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Re: Anyone else have trouble speaking?
« Reply #25 on: Dec 29th, 2003, 2:25pm »
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I can't put together a sentence either and if I try sometimes i mess up the order of the words.  I also get very confused at times during a CH, such as losing my sense of direction, getting lost, etc. if i'm not at home.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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pubgirl
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Re: Anyone else have trouble speaking?
« Reply #26 on: Dec 29th, 2003, 2:46pm »
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Lizzie
 
I agree that knowledge is crucial in our search for help for our condition, and the abstract may be a significant or interesting one but ........
 
A sufferer posted a question about speaking in single words, not sentences, which seems relatively common during full blown CH attacks. You posted a link in reply to her about hemiparesis. If someone is new to CH, is frightened by it and what it is doing to them, to immediately link a difficulty forming sentences with partial paralysis without even knowing if numbness or paralysis is manifesting is IMHO unwise.
 
We now have unprecedented access to detailed and often complex medical studies, and this is great, but it has to be used carefully as "a little knowledge can be a dangerous thing"
 
Wendy
 
« Last Edit: Dec 29th, 2003, 3:23pm by pubgirl » IP Logged
Charlie
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Re: Anyone else have trouble speaking?
« Reply #27 on: Dec 29th, 2003, 5:52pm »
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I really don't know how well I could talk during an attack. Even though talking is my hobby, when I was testing the strength of kitchen plaster, it was confined to screaming things about turning off all the lights, music, and threats about not staying as far away as possible and to never ask what they can do for me.  
 
I don't think it was a problem.
 
Charlie
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Re: Anyone else have trouble speaking?
« Reply #28 on: Dec 29th, 2003, 11:17pm »
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I'm hearing two different things here....one is that some hurt too much to say more than necessary, and some actually can not form and utter the words.
 
I never had a problem forming and saying words during an attack, but my sister, with migraines, has had a problem forming and uttering words.  This is not unusual with migraines.
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cakelady
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damn I don't want to be here

   


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Re: Anyone else have trouble speaking?
« Reply #29 on: Jan 1st, 2004, 4:41pm »
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Thanks for all the responses. It is not a paralysis thing with me. More along the lines of too much going on in my head at the time to form sentences. Being new to this board, and never having had the chance to speak to any other clusterheads, I was just curious.
 
Since I live in Nashville, I am looking forward to this years convention. It will be wonderful to know I am not alone.
Christine
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Re: Anyone else have trouble speaking?
« Reply #30 on: Jan 1st, 2004, 5:30pm »
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Hi again Christine
 
It IS a wonderful feeling knowing you aren't the only person in the world, especially when attacks happen in the small hours when the rest of the world is asleep.
 
If it's any consolation, I went back into cycle very inconveniently on New Year's Eve when I had a houseful of guests. I hid in our cellar puffing on my oxygen, and the only word I could manage then was "Bollocks"
 
Hope you enjoy the convention, I'd love to come but it's a bit far!
Wendy
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cakelady
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damn I don't want to be here

   


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Re: Anyone else have trouble speaking?
« Reply #31 on: Jan 1st, 2004, 5:36pm »
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doesn't it just suck that we feel we have to hide?  
Christine
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Re: Anyone else have trouble speaking?
« Reply #32 on: Jan 1st, 2004, 8:56pm »
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Don't hide Ive worn 02 infront of others may times.  its either that and abort it or im done having fun with them.  hauled the 02 in a cart a Walmart this last session.  couldnt care less what others think.
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pubgirl
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Re: Anyone else have trouble speaking?
« Reply #33 on: Jan 1st, 2004, 9:16pm »
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I'm afraid I have to as I feel like Dennis Hopper in Blue Velvet when I'm using it. Silly I know, but I HAVE to do it privately.
 
 
Wendy
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t_h_b
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Re: Anyone else have trouble speaking?
« Reply #34 on: Jan 2nd, 2004, 12:02am »
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No physical problem speaking, but difficulty in forming sentences and thinking of words.  Verbally expressing thoughts during a CH can be very frustrating but I really don't want to talk to anyone anyway.
 
Well-meaning people sometimes try to help me and I have to really restrain myself from being nasty.  What I want to say is "Leave me the f**k alone" and what I actually say is  "uh-uh, uh-uh".  If I'm at work or somewhere where there are people around I have to go outside for fresh air and privacy.
 
Occasionally I also get very sleepy afterwards so that it is difficult to stay awake and sometimes I pass out for a couple of hours.  Anyone else with this problem?
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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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