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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Is it just me?
        
(Message started by: islandsonja on Jun 6^th, 2005, 6:21pm)

Title: Is it just me?
Post by islandsonja on Jun 6^th, 2005, 6:21pm

Is it just me, or do any of you hate the name "Cluster Headaches"? This is not a headache, this is so much more. This is not just a group of headaches.
I talked to my aunt today and she was wondering why noone had been able to reach me for the last 7 months and why I had not been returning anyones phone calls. I started explaining to her that I had been having problems and was diagnosed with CH. Her response was, oh yeah, Ive heard about those lately and I think I may have that too ........................................................
Ive been putting off getting oxygen because Ive been hoping these attacks would stop and then I wouldnt have anymore. Well Im done with denial so I got my Doctor to write me a script. Since my insurance has such a high deductible for this, I decided to shop around since I would be paying for it myself. As I went in to talk to the DME providers I would start to explain to them what I needed and for what. The responses I got were oh yeah headaches......................................................... Everyone I have talked to lately seems to know all about this or seems to have it. Its just a group of headaches they say. Thats what I keep trying to tell myself when I feel a knife go through my right eye in the middle of the night. When my head is drenched in sweat. When my eye is blood red and swollen shut. When the drainage is pouring down the backof my throat, out my nose and down my cheek. When I find myself running in circles around my backyard in the middle of the night I just try to tell myself. Its just like everyone else says it is, is a headache...............................................................................................................................................................................................................................................................not.......................................or is it just me?

Title: Re: Is it just me?
Post by vig on Jun 6^th, 2005, 6:55pm

I still like the term seizures.
I think what we experience is closer to that than a headache, especially the bad ones.

Title: Re: Is it just me?
Post by Sean_C on Jun 6^th, 2005, 7:05pm

Unfortunately they are classified under headache because we suffer head pain. The pain is intolerable to say the least. We know exactly how you feel Island.

I think you should definately get proper medical advice to help get them under control if you can.

Let us know how you make out at a nuerologist. Try to print as much information as you can prior to your appointment, it wil be helpful when you talk to the doc.

PFDAN's to you

Sean.......................................

Title: Re: Is it just me?
Post by Jonny on Jun 6^th, 2005, 7:32pm

Can you say "Paragraphs"?

Title: Re: Is it just me?
Post by Sean_C on Jun 6^th, 2005, 7:41pm

on 06/06/05 at 19:32:25, Jonny wrote:

Can you say "Paragraphs"?

Don't ask me why but I was dieing here laughing because I thought of that skit on SNL where Eddy Murphy was role playing Mr. Rodgers and he was saying shit like that ;;D, that fucking killed me dude [smiley=laugh.gif]

Title: Re: Is it just me?
Post by burnt-toast on Jun 6^th, 2005, 9:17pm

I am 100% certain the person that coined the name Cluster Headache and made the first reference in a medical journal never had even one. I do like the term seizures.

Hell, its easier for me to remember the date of my first cluster attack than to remember my wifes birthday!

Title: Re: Is it just me?
Post by yikes-another-one on Jun 6^th, 2005, 10:30pm

When I went into the E.R.

He said they would treat the "Spasm"

and hopefully help ease the pain level too.

Even the ER Doc knew it wasn't "Headache"

so much as Trauma in the head region. ;)

just wish the rest of the world, including my mother,
would get on board and learn a thing or two.

She still says if i were in pain,
i'd lay down or pass out from the pain.

(She thinks I am just a whimp.
i know by the way she rolls her eyes when
i try to explain the pain scale.)

Hey, no one who gets these is just a whimp.
They really suck. but you have to get one to realize it.

Title: Re: Is it just me?
Post by kcopelin on Jun 7^th, 2005, 1:15am

i guess its not so much the term head-since that is anatomically correct...or cluster since that does describe frequency...its the ache part. so i suggest the following
1.explosion
2.detonation
3.syndrome

I so agree with y'all, if i hear one more person tell me-oh i have migraines too, you must be under stress (hell yeah i'm stressed from these CH) why don't you just go lay down in a dark quite room? Oh, i react like that to MSG/chocolate/cheese,
i know they mean well but i find myself wanting to say something like i have recurring beri-beri or encephalitis or leprosy rather than cluster headaches.
PFDAN y'all
sorry i sound so grouchy
kathy

Title: Re: Is it just me?
Post by mynm156 on Jun 7^th, 2005, 2:07am

It just kills me when ppl say (Oh I get those too or Yeah I get really bad headaches sometimes) I just have to laugh.

Good Vibes

MYNM156

Title: Re: Is it just me?
Post by Lizzie2 on Jun 7^th, 2005, 2:25am

on 06/07/05 at 02:07:46, mynm156 wrote:

It just kills me when ppl say (Oh I get those too or Yeah I get really bad headaches sometimes) I just have to laugh.

Good Vibes

MYNM156

I'm a member of an email list-serv for AVN, and the other day I was sharing some info related to migraine and clusters and some of the stuff I've been to...leading up to the fact that I took steroids to treat these conditions which in turn appear to have contributed to the AVN. The two emails I got that same night which addressed my email directly said, "I have gotten migraines and cluster headaches for years."

Something made me think that wasn't the case.

So I posted a bunch of links and wrote more stuff...and suggested the cluster quiz, etc etc. I won't ever come right out (especially not online) and say, "No you don't have them." But I'll generally share some more info and point them into some very detailed info over here - I think that says enough at times! :)

Title: Re: Is it just me?
Post by burnt-toast on Jun 7^th, 2005, 7:09pm

What kills me is reading "maintain normal sleep habits" as a preventative measure for CH.

I guess I could follow this advise if normal was getting stabbed in the eye and hammered in the side of the face a few times each night.

Title: Re: Is it just me?
Post by Lizzie2 on Jun 7^th, 2005, 10:33pm

on 06/07/05 at 19:09:49, burnt-toast wrote:

LMAO...at the end of May, I went to a sleep center to get the results of my sleep study. First off - the study didn't actually show anything, except that I have a lot of problems sleeping. That made me laugh.

The doctor who runs the center wants to work with me to change my sleeping habits - I generally have a few days of insomnia and then crash. So he wants to adjust it so that I sleep a set amount each night, follow a schedule, etc.

I called the doc who asked for the consult in the first place and told him that this is impossible with having clusters at night! I see that doc tomorrow - can't wait to hopefully get some advice I can use a little more! Nothing like trying to have regular sleep habits when you have CH. LOL

L2 :)

Title: Re: Is it just me?
Post by Jasen on Jun 7^th, 2005, 11:26pm

The way I've been explaining it to those who have no clue as to what a CH attack is like, has been; You know that pain you get in your eye for 10 15 seconds from drinking a Slurpee or a milkshake to fast, ( 'bout eveyone has had brain freeze) Now imagine that pain for an hour. They all say OUCH!!! Now imagain that pain for 4,6,7,8 hrs. Then imagian getting it 2,3,6 times a day, most every day, for a month or 2,3,4 or more.
Seems to do a pretty good job of letting them know what your/we're going through.

Hope you can get the O2, it sure has helped me.

Better days :)