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(Message started by: catlind on Feb 1^st, 2004, 11:09pm)

Title: Roxy's words
Post by catlind on Feb 1^st, 2004, 11:09pm

I'm copying and pasting here because her message is so very important it needs a thread on it's own not one buried on page 3 of another one.

on 02/01/04 at 21:16:55, Roxy wrote:

Thelma reporting in here…..they finally let me back on the computer…..I was being denied access for some reason….LOL.

I can’t tell you enough how much everyone’s words here, in email and on the phone meant to me. When I am feeling a little better, I’ll answer all the emails, but it’s going to have to wait till I’m back up to par. Much as I hate to admit it…..I’m not quite there yet.

It was an exciting and eventful week, but the most exciting thing was what was accomplished at the New England Center for Headaches. The timing couldn’t have been better….they were as ready for us as we were for them. Cat will post everything as soon as she can catch her breath (and after the small breakdown she will have as soon as she is enveloped into Clark’s arms tonight….she is due). What notes we were going to post….well, that got a little sidetracked by the hotel fire. And, then what we were going to work on in the truck…..well, that got a little sidetracked by the ambulances, police and EMT’s.

I am glad that Cat posted about the mixing of triptans. What scares me, is that this was not the first time I have done that. I did it both nights at the Iowa get together…..so, thinking that it hadn’t made a difference in the past, I didn’t hesitate to do it again. DON’T BE FOOLED BY THAT!!!!! Just because you’ve gotten away with it before, doesn’t mean your body will react the same every time. My cardiologist just sat in the ER and shook his head at what I had put into my body. He even said….” I don’t think there is one vasoconstrictor that you haven’t ingested.” I also know, that had I kept going, I would have taken another shot of trex. The results of that…..I don’t even want to think about. Needless to say, my self-medicating days are over. I have a new neurologist at NECH now, and I don’t think he will take kindly to that kind of behavior.

I do want to say one thing. I know that had I not been with Cat, I’m not sure I would have made it. Greg and I are both aware, that had it not been for her quick thinking and actions, the day would have ended much more tragically. I know that sounds a little melodramatic, but this was repeated by the doctors also. From the time I knew it was bad, and heading south fast……Cat had medical attention for me within five minutes. By that point, my body was in shock and I was unable to speak. And here is another point that I think all clusterheadache sufferers and their families should be made aware of. If you are having issues with your heart, please don’t even try to EXPLAIN that you can’t take nitroglycerin…..just tell them you are allergic. Even with Cat yelling over the sirens…..”She’s allergic!!!!”, they still wanted to give it to me. In the ER when I set off all the alarms, the cardiologist asked her again….”Now, why can’t she have nitro?” It was then explained to me, that with my heart in the condition it was already in, a cluster on top of that would have sent me straight to the ICU with a massive heart attack….or straight to the morgue. One of the two, and I’d rather not know which place I would have gone to.

Our own little catlind did save my life this week. Her and Greg both deserve some kind of award for what they endured. Cat, for her quick thinking….and Greg for dealing so well with us on the 10 hour drive home. Two women, both getting hammered about every 30 minutes with a ch (and needless to say….no triptans), no 02 , bad food that made us all sick, broken fingers, three cell phones ringing continuously, barefoot in 14 degree weather. We did have 10 ice packs the hospital had provided, and we used every last one of them before we hit Virginia. I think he was really glad to finally unload us…LOL.

But what pisses me off the most….they endured this because of my stupidity. I KNOW not to mix triptans, the doctors have told me that. But, like everyone that thinks they’re bulletproof….you just don’t ever think it’s going to happen to you.

Please, please don’t let it happen to anyone else. Cat might not be sitting beside you when it happens.

Cat

Title: Re: Roxy's words
Post by fubar on Feb 1^st, 2004, 11:32pm

So, don't mix triptans, right? [smiley=smartass2.gif]

Tracey, I am so glad we didn't have a more drastic reminder of how incredibly important it is to follow your doctor's instructions with basic no-no's like that one. Sometimes we all think we know better than they do (a lot of times we do, unfortunately) but there are things they know to be fact, and that's why they repeat those facts over and over. Adverse drug interactions are a well known quantity, and any pharmacist can tell you what can't mix with what. Sometimes the pharmacist is a much better consultant in this area since he should know of every medication that you are taking. When you get new meds, make it a point to ask about interaction with anything you might be taking, including OTC drugs.

Reading that stuff you wrote makes me cry with happiness that we didn't lose you.

-Shawn

Title: Re: Roxy's words
Post by TxBasslady on Feb 1^st, 2004, 11:48pm

Tracey,

All of us have made mistakes. Have made the same mistake more than once.

Don't beat yourself up about this. Considering you hadn't had a problem in the past, I think we all might have done the same thing, had we been in your place.

You and I know that there are others here on this board that does the same thing. It was just your turn to get the message. And by you getting the message...and telling us about it, others here will get the message hopefully before anything happens to them.

I won't deny that I was worried sick. However, knowing that Cat and Greg and Gregory were there, made it easier to handle.

Thank God that Cat was with you, and knew what to do to get you help. Just can't beat those cluster friends!
You already know how much you are loved here. With all these friends.....and all this love.....and all the prayers that went out to you, it's no wonder that you made it thru this.

I sincerely hope that you are feeling better....and you know how to reach me if you need too. Remember that we love you, and are still saying a few prayers for you.

If you ever need me.....just call...and I'll be there.

Love and pf vibes to you, sweetie

Jean

Title: Re: Roxy's words
Post by TxBasslady on Feb 1^st, 2004, 11:50pm

Cat......

Thank you.......you are a very special friend. :'(

Jean

Title: Re: Roxy's words
Post by Edna on Feb 1^st, 2004, 11:57pm

WOW Thank you cat for posting it for us.

Tracey, words can't even begin to get my point out to you, so I won't even bother.

What an ordeal of a week for the both of you with an ending we should all be thankful for, yet should also learn from.

Tracey, WHEN you're all better and rested, you know where to find me if you need friend!!!!!!!!!!!!!

Love and hugs, (amidst my emotional tears here)
EDNA

Title: Re: Roxy's words
Post by ave on Feb 2^nd, 2004, 4:06am

Great big sigh of relief going up here!

Well, now some of us know, at least, who we'd rather have with us when the going gets tough. Do they do Catlind-clones?

Seriously, another project for us: SOS alarm bracelets or pendants stating NO NITRO NO NITRO NO NITRO IT WIIL KILL ME!

Title: Re: Roxy's words
Post by BarbaraD on Feb 2^nd, 2004, 6:24am

Tracey,

Glad you're back among the living... NO NITRO and don't mix trex!

And watch out for rattlesnakes.... ;)

Hugs BD

Title: Re: Roxy's words
Post by Kirk on Feb 2^nd, 2004, 9:20am

Too right I'm glad to here you two are alright. mixing triptans is a bad idea.
Although I have a bit of trouble with that statement about Tracy not being able to talk.
I can believe a lot of things, but Tracy not being able to talk. Try that on someone else.

TTFN

Title: Re: Roxy's words
Post by Paigelle on Feb 2^nd, 2004, 9:25am

I am so glad to hear both of you are doing fine and that Tracey is alive and getting well. You both deserve a vacation now!

However, please remind me that I never, ever want to travel with the 2 of you. j/k

Title: Re: Roxy's words
Post by catlind on Feb 2^nd, 2004, 9:27am

I am going to order my medic alert bracelet today. I do have a cardiac condition albeit not a dangerous one on a normal day, but after seeing what it did to my vitals when they put me on a nitro drip....I will be damn sure they don't ever do it again. I'm glad you mentioned this Ave, cause I probably wouldn't have thought of it.

Donna H is a cardiac nurse, and I'm sure she can attest to Tracey and the hospital docs (and my) emphatic belief that if they'd given her nitro it would have been a different story. I'm sure Donna can tell us all what happens to your cardiac vitals when you have a cluster attack.

I know that nitro can save your life in a heart attack, but when I had my little 'spell' over the holidays, ekg showing another ischemic attack, the baby aspirin and ativan worked well to control things.

Me being the anal person that I am, I would also recommend that if you have a family history of heart disease and you use triptans, carry a bottle of baby aspirin with you where you go. I was livid with myself for standing in the kitchen before I got on the airplane and thinking, "what the hell do I need those for" and not packing them.

I'm sure you guys are sick of the lecture, but you are going to get even sicker of it, because I will not stop reminding you and it's so vitally important, it will be the subject of part of the lectures at the convention. Lori Choyce from the New England Center for Headaches helped us through at the hospital and with her hospitality, and was so shaken by it, she told us she would be speaking on this subject at the convention.

Folks, if you aren't yet sure about whether or not it's worth it, let me tell you what it put me through...if you can't think of yourself to stop you from mixing them, think of those around you that love you. I drove my grandmother to the hospital over the holidays while she was having an actual heart attack (she's almost as stubborn as Thelma and wouldn't let me call an ambulance) Because she didn't call one, she did have a heart attack. I was more upset and more frightened by what happened to Tracey than I was with my grandmother. It ripped my heart out and shoved it down my throat while I used every ounce of everything in me to keep my cool and get her help.

You've all heard me say that nothing beats the pain of CH. Well I know now that something does. Watching what happened to someone who I love as dearly as Tracey nearly leave me for good was far more painful than any Kip 10 I've ever had. So remember that next time you think you are invincible and want to mix anything, do anything, take anything to get rid of your pain. You will put the ones who love you through a worse pain than any CH attack.

Sorry for the novel, I just have to make sure you all understand with crystal clarity.

Cat

Title: Re: Roxy's words
Post by Mastifflvr28 on Feb 2^nd, 2004, 11:58am

A Cat Clone??
I don't think so! That's ONE special person!
And Cat...I felt your heart getting ripped out as I read your posts...as it tore at mine too.

Love you both, LOTS. Miss ya too...but I'll debate traveling anywhere with ya's :)
3's a crowd, lmao
Mast

Title: Re: Roxy's words
Post by TomM on Feb 2^nd, 2004, 12:06pm

First and fore most, I am thankful to know that Tracey and Cat are safe.

Secondly, pardon my ignorance, but why no Nitro for CH'ers? I think I missed something.

Third, Cat's reaction to Tracey's condition and her forethought about what to do next is inherent to military people but not normally the spouse. Cat has the internal organizational skills to see the next step before it is needed. For that, I am thankful.

I am glad Thelma and Louise made it home. In the words of Jimmy Buffett, "I don't want that much organization in my life...We need more fruitcakes in this world!" In this case, Jimmy was WRONG but I love my Fruitcake friends.
TomM

Title: Re: Roxy's words
Post by Mastifflvr28 on Feb 2^nd, 2004, 12:22pm

here ya go Tom, upper left hand corner:
http://www.clusterheadaches.org/triggers.htm
Mast

Title: Re: Roxy's words
Post by TomM on Feb 2^nd, 2004, 2:48pm

Thanks, Mast.
Doh! Sometimes I wonder about meeself... ;;D
Tom

Title: Re: Roxy's words
Post by Roxy on Feb 3^rd, 2004, 2:30pm

on 02/02/04 at 09:20:23, Kirk wrote:

Although I have a bit of trouble with that statement about Tracy not being able to talk.
I can believe a lot of things, but Tracy not being able to talk. Try that on someone else.

....least you didn't call me non-proxy roxy....... ;;D

Oh yeah....bite me...... ;)

Title: Re: Roxy's words
Post by JDH on Feb 3^rd, 2004, 2:35pm

on 02/03/04 at 14:30:58, Roxy wrote:

Oh yeah....bite me...... ;)

Looks like you're getting back to normal ;;D

Jim

Title: Re: Roxy's words
Post by catlind on Feb 3^rd, 2004, 2:47pm

hehe she's raring to go again already. Just got word from Lori though and according to our angel nurse Tracey isn't allowed to travel yet...course I won't be the one to tell her!!! ;)

And yes Kirk, she was not only unable to talk, but unable to walk/move. It was that bad.

Not much can hold her down...she'll be back at it long before the medical world thinks she can!

Cat

p.s. trust me, you don't want a cat clone, I cause enough trouble just with one of me hehe.

Title: Re: Roxy's words
Post by Roxy on Feb 3^rd, 2004, 2:56pm

on 02/03/04 at 14:47:19, catlind wrote:

Just got word from Lori though and according to our angel nurse Tracey isn't allowed to travel yet...course I won't be the one to tell her!!! ;)

Is this your at a safe distance way to tell me I'm not flying out this Friday.....LOL. After all the trouble I've gone to convincing Greg I can travel??

Sheeeeeesh.....you two are going to be the death of me....... ;;D

Title: Re: Roxy's words
Post by Elaine on Feb 3^rd, 2004, 8:05pm

Roxy be smart! Stay home and be safe, like I said if not for you your family and friends.
We care about ya!

Title: Re: Roxy's words
Post by BruceD on Feb 3^rd, 2004, 8:37pm

on 02/03/04 at 14:56:30, Roxy wrote:

There's a safe distance??!! :o

Later
BruceD

Title: Re: Roxy's words
Post by M.R. on Feb 3^rd, 2004, 9:37pm

Good Grief woman.....Glad you are okay. Cat...You get the suffer/supporter award. This struck closer to home than you know. I vote we send a doctor with every advocacy team. Maybe a shrink too...... ;;D

Title: Re: Roxy's words
Post by Charlie on Feb 3^rd, 2004, 10:01pm

Yikes:

Glad you were there and even more so that you're here. Clusterheads are sumpin'.

You people are scary, bright, wonderful and exhausting.

Whew.

Charlie