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        Cluster Headache Help and Support >> Cluster Headache Specific >> ughhhhhhh
        
(Message started by: tessa_c on Feb 28^th, 2006, 8:54pm)

Title: ughhhhhhh
Post by tessa_c on Feb 28^th, 2006, 8:54pm

for the past couple of weeks what i used to call "eye pain" (but now know are shadows) have been getting pretty heavier. i usually dont have pfd's as far as the shadows are concerned.

IT'S ALWAYS SOMETHING!!!!!!!!!!!!!!!!!!!!!

i never recorded the shadows, becasuse 7 out of 10 x's i never needed and abortive. i just dealt with it. grateful to have "eye pain" and not a ch. but the last few ive had to. and to top it off ive been at work. where i deal with the public, judges, cops and LOUD NOISE!!!!!!!!!!!!!!!!! and i have to talk to people when i dont want to. and i have to make sure that i speak clearly. since now my words are starting to get slurred, or twisted. not often but enough to bother the f$%K out of me.

my makeup tricks are starting to run out. i can hide an eyelid that looks puffy or a red eye with visine. but now its starting to look like i have been hit in the eye.

i cant remember having an shadow that woke me up. well you know what, last night it did. so i guess since it wanted attention i should give it some. i laid there tried to feel where the pain was exactly and it felt like it was running behind my nose.

now i just tell myself its time. AND I WANT CHOCOLATE!

i called my neuro today since i didnt get a call back about the 4 mg imitrex, and a bigger o2 tank. and again im told the girl that handles calling the insurance companies isnt here today.
IT'S BEEN 2 WEEKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
"but i will make the call myself in the morning." and before i know it i said "YEAH RIGHT"

it took me a long time to find a neuro that understood ,,,, but damnit whats with the nurses, or medical asst.'s or whatever they are.
i feel like going to the office and just sitting there and letting them stare at my swollen eye while i eat chocolate and read the chronicles of narnia all day.

Title: Re: ughhhhhhh
Post by Richr8 on Feb 28^th, 2006, 9:19pm

on 02/28/06 at 20:54:47, tessa_c wrote:

,,,, but damnit whats with the nurses, or medical asst.'s or whatever they are.

I am sorry you are in pain.
This is just another example of folks without Ch not getting it. I go through a very difficult time with trying to coordinate Insurance companies and office admins that just don't share our sense of urgency or understand our level of discomfort (spelled agony).
This is the only place I've found where I feel anything I say about CH matters.

wishng you PFDAN,

Title: Re: ughhhhhhh
Post by MJ on Feb 28^th, 2006, 9:23pm

on 02/28/06 at 20:54:47, tessa_c wrote:

i feel like going to the office and just sitting there and letting them stare at my swollen eye while i eat chocolate and read the chronicles of narnia all day.

Tell them right off your not going to share either then start reading out loud untill you get what you need.

Title: Re: ughhhhhhh
Post by Dragnlance on Feb 28^th, 2006, 9:43pm

I would stand at the counter and stare at the nurses, and anyone else that comes in, (and if they ask, be certain to tell them that you are STILL waiting for medical help)
until they give you the help you need. Be sure to ignore the comments made to "Please sit down".

Dragn

Title: Re: ughhhhhhh
Post by thebbz on Feb 28^th, 2006, 9:54pm

Hang in there. They don't have a clue. I hate the shadow, it's like being on the edge of a cliff playing hopskotch. :o
Get in there and squeak...soon someone will get tired of hearing it and apply grease. :P
jb

Title: Re: ughhhhhhh
Post by tessa_c2 on Feb 28^th, 2006, 11:52pm

i hate to be a pain in the [smiley=moonwiggle.gif] but it seems like they are pushing me to it. i give them to the end of the week then im going there.

Title: Re: ughhhhhhh
Post by mynm156 on Mar 11^th, 2006, 9:45pm

I hear ya and I am sorry you are in pain!

Good Vibes

Your Brother In Pain

MYNM156

Title: Re: ughhhhhhh
Post by rapunzel on Mar 11^th, 2006, 9:57pm

I am bringing my very stern husband with me to my regular dr appt on Thursday- that way I can get a referral to the neuro.
If I didnt bring him, my dr would just blow me off some other pain killers. (ten ys ago I really did hear him say the word 'placebo' to the nurse- then assuming I didnt know what it was- and therefore implying that I was an addict.)
It is so frustrating that anyone could wait- can not be made to understand the urgency of the problem with the CH.

The nurse who did my cat scan Thursday took one look at my lovely bloodred puffy eye and asked me if I needed a glass of water. uh- nojustpleasegetoutofmywayihavetogo-

Good luck to you, hope you get some relief soon.

Kim

Title: Re: ughhhhhhh
Post by SIDMOORE on Mar 11^th, 2006, 10:35pm

MY HUSBAND NOW HAS AN OXYGEN MACHINE IT DOESN'T WORK QUITE AS WELL AS THE TANK BUT AT LEAST WE DON'T HAVE TO WAIT FOR THEM TO DELIVER.

Title: Re: ughhhhhhh
Post by Jasmyn on Mar 12^th, 2006, 11:16am

The speech thing, slurry, tongue twisters get to me in a cycle. I know my brain doesn't click sometimes but this just makes me feel like a complete idiot ::) ;)

Tessa you hang in there Girl and give those nurses gas!

Title: Re: ughhhhhhh
Post by sandie99 on Mar 13^th, 2006, 2:44am

Tessa,

I hope that you'll get some help asap! [smiley=hug.gif]
I've just sent some ((((((((((vibes)))))))))) your way.

Best wishes,
Sanna

Title: Re: ughhhhhhh
Post by kayarr on Mar 14^th, 2006, 12:23am

I am mad for you >:(

I know it took me three flipping weeks of at least 6 hours a day to get my husband set up with O2 when we moved to another town. If it hadn't happened he was going to the hospital and hanging out there. Heck the insurance would have paid for more of the ER than O2 and tanks. I know we were lucky because I was off work and able to do all the calling and intervening for him while he carried on his life.
Maybe we should start and advocacy program and do just that. It would take getting written permission to talk to the Dr.s and such but it may work:)