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        New Message Board Archives >> 2004 Posts >> Anyone else have trouble speaking?
        
(Message started by: cakelady on Dec 28^th, 2003, 5:38pm)

Title: Anyone else have trouble speaking?
Post by cakelady on Dec 28^th, 2003, 5:38pm

i have realized that I can't talk very well when I'm having a CH. The thought forms, but the words don't come. Like last night my head said " Help, my icepack broke, I need a new one" it came out "BROKE BAG"
I speak in single words or incomplete phrases. I'll ask the neuro, but just wondered if anyone else had this happen.
Christine

Title: Re: Anyone else have trouble speaking?
Post by BobG on Dec 28^th, 2003, 5:49pm

I've never had trouble speaking during an attack.

But, I never want to either, other than using some very choice words that no one else should be exposed to.

And I don't want anyone talking at or near me. Other than hearing my own voice I want silence.

Title: Re: Anyone else have trouble speaking?
Post by jonny on Dec 28^th, 2003, 5:56pm

on 12/28/03 at 17:49:21, BobG wrote:

Big time ditto, Bob!!!

.............................jonny

Title: Re: Anyone else have trouble speaking?
Post by don on Dec 28^th, 2003, 6:23pm

Big Time Double Ditto.

Title: Re: Anyone else have trouble speaking?
Post by ckelly181 on Dec 28^th, 2003, 7:21pm

I've dealt with that. I just don't have the wherewithall to form thoughts in my head, much less speak in complete sentences.

During this last cycle, a coworker asked me if I needed anything, and I replied, "Can't...just...don't" and that was it.

Chris

Title: Re: Anyone else have trouble speaking?
Post by BlueMeanie on Dec 28^th, 2003, 7:48pm

I usually have a hard time saying any word that has more than 4 letters.

I wonder why ?

Title: Re: Anyone else have trouble speaking?
Post by don on Dec 28^th, 2003, 8:15pm

Get = 3

The =3

Fuck = 4

Away = 4

From = 4

Me = 2

I guess no mor than a 4 letter word for me.

Title: Re: Anyone else have trouble speaking?
Post by Melissa on Dec 28^th, 2003, 8:42pm

I use very broken sentences when I NEED to tell my family I'm getting hit or need help (ice, coffee, whatever). I think because the pain is so intense, it takes all the energy and concentration you have to deal with it, let alone talk.

:)mel

Title: Re: Anyone else have trouble speaking?
Post by mickey on Dec 28^th, 2003, 9:18pm

I have noticed on a few occaisions that it almost felt like I had been to the dentist and had a mouth full of novicane during some headaches.
Thats the only trouble I have had talking except the cuss words.

Title: Re: Anyone else have trouble speaking?
Post by Carl_D on Dec 28^th, 2003, 9:49pm

I can talk during a CH. I can say things like "Go away now!" To "Get the fuck out of here now!"

Otherwise, if I am pissed, I curse any form of god and usually say 'godfuckingdammit' alot.

Carl D

Title: Re: Anyone else have trouble speaking?
Post by Rick_K on Dec 28^th, 2003, 10:41pm

Don, well said

Title: Re: Anyone else have trouble speaking?
Post by pubgirl on Dec 29^th, 2003, 3:15am

Personally I don't speak at all, I howl like a deranged animal and everyone stays away from me!

Wendy

Title: Re: Anyone else have trouble speaking?
Post by chronic_chic on Dec 29^th, 2003, 3:32am

Hiya,

This is a very vague abstract. But it's a report of instances of CH similar to hemiplegic migraine. If you've ever seen a person in a hemiplegic migraine...they're not talkin too well! Would have to find out a LOT more about this before I could really comment on it, though. Hemplegic migraines often have a sort of temporary paralysis involved with them, and I'm not sure if that is what is meant by the documented cases in this study. You could buy the article online and really read the case study, if you wanted.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12005289&dopt=Abstract

Lizzie :)

Come to think of it...I might have access to this journal...I'd have to check into that.

Title: Re: Anyone else have trouble speaking?
Post by pubgirl on Dec 29^th, 2003, 3:55am

Lizzie

Christine might be worried by what you have posted. It seems a huge jump to me from someone who says they have a problem speaking in full sentences when in agony to an abstract about one-sided paralysis!
I am sure many, many people here find it hard to speak when in that much pain, and it would certainly be worth talking to a neuro about, but that is VERY different from a neurological symptom such as hemiparesis.

Wendy

Title: Re: Anyone else have trouble speaking?
Post by chronic_chic on Dec 29^th, 2003, 7:42am

well let's put it this way...some people lose feeling in half their face or half their mouth with a hemiparesis and don't know what it is or how to describe it. doesn't have to be full-bodied, and it doesn't even have to last a LONG time...hemiplegic migraines last a very big variety of lengths of times. if there is such a thing as this existing in CH...which it appears can be possible...don't you think it would be better to be informed than unawares? to be informed in life is our best weapon.

Lizz

Title: Re: Anyone else have trouble speaking?
Post by thomas on Dec 29^th, 2003, 8:16am

on 12/28/03 at 20:15:51, don wrote:

Get = 3

The =3

Fuck = 4

Away = 4

From = 4

Me = 2

I guess no mor than a 4 letter word for me.

That's about all I care to say, also. ;)

Title: Re: Anyone else have trouble speaking?
Post by Paigelle on Dec 29^th, 2003, 8:36am

I have had HA that leave me speaking strangely. I am like you and things just don't come out completely or something. Of course, most of the words out of my mouth when I have a cycle are four letters. I say nothing nice.

Title: Re: Anyone else have trouble speaking?
Post by CJohnson on Dec 29^th, 2003, 9:21am

1. There are a lot of things going on in your brain during an attack besides the pain, although the pain is, of course, the most significant. Its no surprise at all that you aren't able to speak clearly during an attack. Hell, its impressive that you are able to even form the full thought.

2. What Don said.

3. Liz, fascinating link. It sort of correlates with the other thread about clusters as a symptom. In this case, a possible symptom of ion channel dysfunction.

"Ion channels are the most basic elements of neuronal function. Proper structure, expression, localization and regulation of these channel proteins are essential for their normal activity. Abnormalities of ion channels contribute to many diseases that are now generically categorized as channelopathies. While channelopathies are broadly investigated in heart, kidney, and skeletal muscle, these disorders are seriously understudied in the central nervous system."

http://www.ninds.nih.gov/news_and_events/channelopathy.htm

PFDANs
-Curtis

Title: Re: Anyone else have trouble speaking?
Post by ozzman on Dec 29^th, 2003, 9:25am

During K8-10 all my efforts are concentrated on dealing with the pain, not sentence structure, like Wndy I may revert back to grunting even...

No paralysis, but some numbness on that side for sure.

Ozzy

Title: Re: Anyone else have trouble speaking?
Post by AlienSpaceBabe on Dec 29^th, 2003, 9:35am

I can speak from experience here. Had a CH in the neuro's office with his assistant there. When the neuro came in, it was over but I still couldn't "find" words. This is quite typical for me, especially with the really rough CHs.

Neuro said it's something that is more likely to happen with a meegraine, but does happen with CH. He isn't concerned about it (or some of the other weird stuff) as long as it comes back.

So.... know you're not alone, Christine. This is normal for me, starting before the CH hits and lasting about 30 minutes after it ends.

Lizzie aka ASB

Title: Re: Anyone else have trouble speaking?
Post by Brian_Y on Dec 29^th, 2003, 10:15am

I speak in tongues.

It's the Church of the Horribly Potty Mouthed Nazis from the Far Side of Hell, though.

I am surprised no one heard me last night around 12.45 AM.

Title: Re: Anyone else have trouble speaking?
Post by CHmess on Dec 29^th, 2003, 10:26am

on 12/29/03 at 10:15:01, Brian_Y wrote:

I speak in tongues.

It's the Church of the Horribly Potty Mouthed Nazis from the Far Side of Hell, though.

I am surprised no one heard me last night around 12.45 AM.

LMAO ;;D That is sooooooo funny!!!!!! [smiley=laugh.gif]

Title: Re: Anyone else have trouble speaking?
Post by aprilbee on Dec 29^th, 2003, 11:15am

Don't have trouble speaking, when I need help, I just have to say one word, like pills, or ice, or door and my husband and daughter know what I mean...

Title: Re: Anyone else have trouble speaking?
Post by gmlevenhagen on Dec 29^th, 2003, 11:18am

on 12/29/03 at 10:26:59, CHmess wrote:

LMAO ;;D That is sooooooo funny!!!!!! [smiley=laugh.gif]

I stand and give a hellfukinya on that one

Gena

Title: Re: Anyone else have trouble speaking?
Post by 12gagueblast on Dec 29^th, 2003, 11:51am

on 12/28/03 at 17:38:53, cakelady wrote:

Exactly I have tried to explain to my wife. It is like there isn't enough of me left to form sentences. I am just all pain, I have become the pain and the pain has become me. Ain't it just grand.

Title: Re: Anyone else have trouble speaking?
Post by Renee on Dec 29^th, 2003, 2:25pm

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.

Title: Re: Anyone else have trouble speaking?
Post by pubgirl on Dec 29^th, 2003, 2:46pm

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

Title: Re: Anyone else have trouble speaking?
Post by Charlie on Dec 29^th, 2003, 5:52pm

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

Title: Re: Anyone else have trouble speaking?
Post by Donna H. on Dec 29^th, 2003, 11:17pm

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.

Title: Re: Anyone else have trouble speaking?
Post by cakelady on Jan 1^st, 2004, 4:41pm

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

Title: Re: Anyone else have trouble speaking?
Post by pubgirl on Jan 1^st, 2004, 5:30pm

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

Title: Re: Anyone else have trouble speaking?
Post by cakelady on Jan 1^st, 2004, 5:36pm

doesn't it just suck that we feel we have to hide?
Christine

Title: Re: Anyone else have trouble speaking?
Post by 12gagueblast on Jan 1^st, 2004, 8:56pm

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.

Title: Re: Anyone else have trouble speaking?
Post by pubgirl on Jan 1^st, 2004, 9:16pm

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

Title: Re: Anyone else have trouble speaking?
Post by t_h_b on Jan 2^nd, 2004, 12:02am

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?