Click this link to read a post I like on the clusterheadaches.com message board...

Garys_Girl

CH.com Hall of Famer

Offline

Making biscuits

Posts: 821
Planet Cat, NJ
Gender: female

Re: Hoping.....
Reply #25 - Jan 8^th, 2009 at 11:02am

Jen, I need those hugs - thank you. Cry

We're not at the cardiologist because he was having a CH attack AND a fever event. His fever FINALLY broke and is down to "just" 102.7. THIS IS INSANE.

I am getting more and more convinced that he's med-resistant because his clusters are caused by something else and are a symptom - there's so much atypical stuff going on with him. All missing the cardio means is that he can't ramp so quick on the verap.

THIS SUCKS.

Laurie

Back to top

This is enough already

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hoping..... Reply #26 - Jan 8^th, 2009 at 11:07am I'm sorry, Laurie. I haven't been around much to offer my support. I really hope things start looking up for Gary soon. More (((((((((((((((hugs)))))))))))))))) Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: Hoping..... Reply #27 - Jan 8^th, 2009 at 11:32am right back at ya, sweetie. I hope those hits let up and let go!!!!!!!!!!!!!!!!!!!!!!!! Laurie
Back to top	This is enough already IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Hoping..... Reply #28 - Jan 8^th, 2009 at 3:27pm Sure hope they can get those fevers figured out. That would be my main concern at the moment. Love & Hugs to you.... Jackie
Back to top	IP Logged

Garys_Girl

CH.com Hall of Famer

Offline

Making biscuits

Posts: 821
Planet Cat, NJ
Gender: female

Re: Hoping.....
Reply #29 - Jan 8^th, 2009 at 3:44pm

I totally agree. Sadly, the infectious disease docs out here were a total waste of time. And while all this time has gone by, Gary's brain cells have been literally frying.

I am SO hoping that they get somewhere at Montefiore. The dept there has a great rep. I know this sounds weird - but I wish we could find a doc as great as our vet.

Laurie

Back to top

« Last Edit: Jan 8^th, 2009 at 3:45pm by Garys_Girl »

This is enough already

IP Logged

gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: Hoping..... Reply #30 - Jan 8^th, 2009 at 3:50pm Garys_Girl wrote on Jan 8^th, 2009 at 3:44pm: I know this sounds weird - but I wish we could find a doc as great as our vet. Sadly that doesn't sound weird at all. Oliver
Back to top	IP Logged

Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: Hoping..... Reply #31 - Jan 8^th, 2009 at 5:17pm Maybe I should just take Gary to the vet! Laurie
Back to top	This is enough already IP Logged

CH-HELL Ex Member	Re: Hoping..... Reply #32 - Jan 8^th, 2009 at 5:59pm Hang in there Laurie, I wish I could help You two have got to get those fevers under control. Get Gary to the Vet asap Phil
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: Hoping..... Reply #33 - Jan 12^th, 2009 at 7:39pm Well, Gary's had a "fever" of 96 degrees for three days now - but he's sweating like crazy and I'm having trouble keeping him hydrated. It's nuts. He also had THREE of those spikey fever events in 24 hours Sat am to Sun am. Wednesday can't get here fast enough. Laurie
Back to top	This is enough already IP Logged

flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: Hoping..... Reply #34 - Jan 12^th, 2009 at 7:44pm Only 2 more days Laurie. Hang in there, you know we're all here cheering you guys on. Please keep us updated on what the docs say. I'm very curious to know what's causing those fevers.
Back to top	Only one life.....only one chance to make the moment count for something - Racer1_NC IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hoping..... Reply #35 - Jan 13^th, 2009 at 12:10pm Still thinking of you guys Love, Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Hoping..... Reply #36 - Jan 13^th, 2009 at 3:00pm Tomorrow is the day.....finally! Keep us posted, please. Jackie
Back to top	IP Logged

Garys_Girl

CH.com Hall of Famer

Offline

Making biscuits

Posts: 821
Planet Cat, NJ
Gender: female

Re: Hoping.....
Reply #37 - Jan 14^th, 2009 at 6:57pm

We were supposed to head into the city yesterday for work - didn't make it.

Didn't make the appointments today. Fever and attack. I couldn't get him into the car by the time we had to leave. Impossible for the man to shower when shaking and shivering uncontrollably with the fever spike. Might have made a difference if we only had to go 1/2 an hour - but the time we should have left we needed 3 hours. But it really is crazy - with the shaking and shivering he doesn't want to move - but with the pain he doesn't want to stay still. Do still have the appt with the head of the infectious disease dept on the 23rd. Rescheduled neuro for 27th.

Did get approval for the MRA, finally. It's such a stab in the dark to figure out when to schedule it.

Stopped the depakote in the meantime. He's back to 5 - 7 hits a day, so it was making things worse.

Today was a real bitch though. The man couldn't stop crying he was so disappointed in himself - but a 3 hour car ride was just so obviously not going to happen. Lack of sleep isn't helping.

So anyway, there ya have it.

Laurie

Back to top

This is enough already

IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Hoping..... Reply #38 - Jan 14^th, 2009 at 7:44pm I'm so sorry. Was hoping they would get to the bottom of this with todays appointment. Does he nee to be in the hospital ya think?
Back to top	IP Logged

Garys_Girl

CH.com Hall of Famer

Offline

Making biscuits

Posts: 821
Planet Cat, NJ
Gender: female

Re: Hoping.....
Reply #39 - Jan 14^th, 2009 at 7:56pm

Certainly not in one out here - he's been there. His GP and his neuro both seem to think getting to this infectious disease doc is the thing to do. He's already tried two out here, but they just didn't seem to get it.

Haven't seen this Gary in a long time:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

This is Gary these days (though in this pic he's not sweating or leaking tears):

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Laurie

Back to top

« Last Edit: Jan 14^th, 2009 at 7:58pm by Garys_Girl »

This is enough already

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hoping..... Reply #40 - Jan 14^th, 2009 at 8:08pm I too am so sorry about today's events. I so wish that there was something I could do or say to help Gary and you. That second picture breaks my heart. Thinking of you always, Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Click Here to visit the CH.com Facebook page!

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Hoping..... Reply #41 - Jan 14^th, 2009 at 8:13pm Breaks my heart too...... Love & Hugs to you both, Jackie
Back to top	IP Logged

Garys_Girl

CH.com Hall of Famer

Offline

Making biscuits

Posts: 821
Planet Cat, NJ
Gender: female

Re: Hoping.....
Reply #42 - Jan 14^th, 2009 at 9:18pm

It is heartbreaking. He looks at least a little bit better now that he's decided to let his hair grow back in. He shaved it off in a fit during a fever. Doc said (after the fact) that it does help cool him down. But it's tough with it so cold out!!!!!!!!!!!!

Anyway.... I wish I'd thought of this earlier. But... even though we SO cannot afford it, I'm hiring a limo for next Friday. That way I'll have a man to help get Gary moved around if he's not too mobile, neither of us will have to drive, and he'll have room to lie down or room to thrash around. I can grab a pile of blankets, and I'm going to ask them to stock it with bottles of water. Out this way "limo" usually refers to a sedan, but I'm going to get a stretch limo so he's got the space.

Laurie

Back to top

This is enough already

IP Logged

flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: Hoping..... Reply #43 - Jan 14^th, 2009 at 9:47pm Laurie and Gary I just cannot find the right words to say right now. I'm just so sad for you guys. My heart aches for the both of you You're both in my prayers.
Back to top	Only one life.....only one chance to make the moment count for something - Racer1_NC IP Logged

Cathi_Pierce

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1191
x0|Oregon City|USA||0|0|OR,Oregon
Gender: female

Re: Hoping.....
Reply #44 - Jan 18^th, 2009 at 3:27pm

Laurie and Gary, it seemed you had so many people making posts, dropping in, I didn't post.......I'm sorry...........
After seeing Gary's pic with the cat, I have to drop in with my own 2 cents.......
That cat looks just like my warm, cuddly, soft-tongued Pepper Kitty, I lost last year.........it made me smile to see Gary with your tuxedo cat.......I soo miss my Pepperkitty......
Laurie, you're an awesome supporter. Gary's going to work this out, with help, of course, and life will return to some normalcy.
You know you have friends to lean on-please count me among them.
Big hugs and lots of vibes going out to both of you!
Cathi Kiss

Back to top

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

IP Logged

Garys_Girl CH.com Hall of Famer Offline Making biscuits Posts: 821 Planet Cat, NJ Gender:	Re: Hoping..... Reply #45 - Jan 22^nd, 2009 at 4:16pm (((((((((((((((((hugs))))))))))))))))))) to all. And there just aren't enough thanks for all to express what I feel when I return to this thread. He's been down with strep throat on top of everything else. It's been so rough. Tomorrow's the day! Laurie
Back to top	This is enough already IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hoping..... Reply #46 - Jan 22^nd, 2009 at 4:25pm I'll be thinking of you both...and saying a prayer. Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

dhjacks CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 13 x0\|San Jose\|USA\|\|0\|0\|CA,California Gender:	Re: Hoping..... Reply #47 - Jan 22^nd, 2009 at 4:40pm God bless you both. Praying for your strength and healing.
Back to top	IP Logged

Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: Hoping..... Reply #48 - Jan 22^nd, 2009 at 5:24pm Positive thoughts, Sweetie.....hoping for a good, productive appointment. Love to you both, Jackie
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Hoping..... Reply #49 - Jan 22^nd, 2009 at 6:58pm I am crossing my fingers for him and for you. Now is the time for you to be as strong as you can.
Back to top	Hurt people.....hurt people. Think about it. IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!