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        New Message Board Archives >> 2003 Posts >> It's officail!
        
(Message started by: TracyS. on Jun 24^th, 2003, 2:21pm)

Title: It's officail!
Post by TracyS. on Jun 24^th, 2003, 2:21pm

Hey all I just want to update everyone. After much whining and pestering I managed to see the Neuro this morning. I have cluster headaches. The tremors and balance that I asked about a few days ago are related to stress and panic. Not the right treatment and repeated attacks and no sleep. ANyway I wanted to say thanks to everyone and I pray with all the drugs I will break this cycle. She put me on striods, gave me lidocaine for my nose gave me imitrex shots and relpax. Told me to call if I needed anything and will see me again in a few months. Just having answers makes me feel more myself,(or until the next attack anyway!) But I don't think I could have come this far without the help and support of all of you out there. I told her about your site and all that I had learned she was going to check it out! She was impressed with the amount I knew. She said she would clue my reg. doc. in and maybe next time he won't miss this in someone else! Thanks agian!

Title: Re: It's officail!
Post by ave on Jun 24^th, 2003, 2:32pm

I am happy for you, Tracey, and well done with the doc.
She sounds like a good one too!

Title: Re: It's officail!
Post by cbolony on Jun 24^th, 2003, 2:53pm

TracyS glad that you found a neuro that understands
and gave you meds right away and try to break your cycle.

Title: Re: It's officail!
Post by Live4Fun on Jun 24^th, 2003, 3:05pm

Tracy,

Where is this Neuro, and does she make long distance house calls?!? ;D

Seriously though, I am glad you got the answers and the meds you needed. Hang in there and hang with us!

Bryan

Title: Re: It's officail!
Post by jonny on Jun 24^th, 2003, 3:16pm

Its official?

What are you doing still standing on the dock?

Grab an oar and plant your butt at the back of the boat, now get that oar wet girlie!!!!!

Row, row, row!!................;D

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

Title: Re: It's officail!
Post by ZAIRA on Jun 24^th, 2003, 3:20pm

Oh... this is a good news Tracy... FIGH, FIGHT, FIGHT!!

Stay hard ;D and all the best for you from Zaira ;) :)

Title: Re: It's officail!
Post by BruceD on Jun 24^th, 2003, 3:25pm

Isn't it wierd to be relieved to just have a "name" for what ails you? That was the way I felt when I was diagnosed. Sort of a feeling like ... once you can name it ... you can fight it.

Welcome, and like jonny said grab an oar. Just make sure you sit aways from Mr. Happy he has a thing for virgin oarswomen. :)

Take care
BruceD

Title: Re: It's officail!
Post by don on Jun 24^th, 2003, 4:03pm

Another victory for a CHer !

Just a suggestion though. I've done the steroid taper countless times. Always breaks the cycle.......... BUT..........if I do not take a preventative along with the prednisone the cycle creeps back in.

You might want to talk to the Doc about verapimil or another type of preventative.

Replax is not a preventative. Neither is imitrex.

Title: Re: It's officail!
Post by TracyS. on Jun 24^th, 2003, 5:18pm

Okay Don thanks for the info. She did tell me to call if I needed anything. I at this stage would say I am a episode sufferer. I spent last summer suffering with no help and everyone thinking I am nuts. So based on that the cycle kicked in same time this year within a week. The striods that must be why she gave me 6 refills. I wondered and thought it a bit much. MAybe she just didn't want to burst my bubble YET! The having something to fight with a name yes big difference. Even today it has helped just to know what the battle is and that I can and will get by, somehow.
The Mr. Happy and the oar, okay I'll jump in but if Mr. Happy gets to out of line, well I'm no small potatoes. I am six one and my Mamma taught me how to stand up for myself! No I'm just kidding, but I don't know how my hubbie would feel about it! No joke again.
The Neuro doc is and hour and twenty minutes from me in Hays Kansas folks, you want to talk about middle America it is! I am thankful that she is there and at least my reg. doc. had enough brains or balls or lack of knowledge to send me :) to her. I felt like today with her on my side I would be able to cope. Of course along with all of you too! Thanks again. Count me in that boat and hey no splashing!

Title: Re: It's officail!
Post by jonny on Jun 24^th, 2003, 5:35pm

on 06/24/03 at 17:18:40, TracyS. wrote:

Count me in that boat and hey no splashing!

Not a problem, theres no splashing on jonnys boat and I keep Mr happy chained so your hubby has no worries.

Welcome aboard!

........................................jonny ;D

Title: Re: It's officail!
Post by TracyS. on Jun 24^th, 2003, 5:38pm

I'm in! No splashing does that also mean no swimming when things get bad? Are the waters infested with sharks? Have you ever had a person over board? Is imitrex the life raft? Here's looking to learning a lot from all of you to coping with this crazy life we live in cycles. :o

Title: Re: It's officail!
Post by jonny on Jun 24^th, 2003, 5:47pm

LMAO Tracy......thats to many questions for my tired two typing fingers to answer ;D

Hang on, its gonna be a wild ride through CH info from here on out!

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

Title: Re: It's officail!
Post by Linda_Howell on Jun 24^th, 2003, 5:55pm

That's wonderful news Tracy. Just hope your Neuro doesn't decide to check out this site until the 7-page Gene thread goes to the bottom and turns a page.

LindaH

Title: Re: It's officail!
Post by cootie on Jun 24^th, 2003, 5:55pm

Glad ya found some reliable help Tracy.....yeah we've had a few fall in the water and a choosen few got knocked out......sumtimes it's a sink or swim world Pam

Title: Re: It's officail!...
Post by Not4Hire on Jun 24^th, 2003, 6:47pm

...is it too soon to mention that TracyS *mis-typo'd* officail... i mean I waited 13 posts?......

...seriously, Tracy.... sorry yer *here*... glad ya got a good diagnosis... many don't ..and many suffer....

hang in kid.... we're all rowin' towards the *sunset* of this MOFO....

best regards...Steve(N4H)

Title: Re: It's officail!
Post by jonny on Jun 24^th, 2003, 6:53pm

LMMFAO....you nit picking hick......LMMFAO (Twice) ;D

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

Oh yeah, shes on the boat and armed with an oar, if she swings at your head somebody better tell me so I can duck. :D

Title: Re: It's officail!
Post by don on Jun 24^th, 2003, 9:22pm

Talk about mixed emotions.

You finally got a diagnosis of CH.

I dont know wether to be happy for you or feel bad for you.

Well if you got em you got em, at least you'll know how to treat now.

Is that prednisone Rx prescribed as a taper or a steady dose?

Title: Re: It's officail!
Post by Ree on Jun 24^th, 2003, 9:47pm

Tracy, the great thing is that you found us not too long before the diagnosis... You were armed with information and a new family of support here... When I met Dave and then the Beast as some call it... he hadnt had a diagnosis and suffered in a very lonely place. It took years to finally find a great neuro... (I found her~ pat pat pat) that could really help... and then to finally find CH.com when I thought there would never be hope...was the icing that made everything come together for us... sorry you have CH but glad you have us to keep you company... good luck... remember the steroids might make ya bitchy... stay tuned for more helpful hints... take care love Ree

Title: Re: It's officail!
Post by Ted on Jun 25^th, 2003, 12:31am

on 06/24/03 at 21:47:40, Ree wrote:

It took years to finally find a great neuro... (I found her~ pat pat pat)

:) :) :) :)

Title: Re: It's officail!
Post by nancyc on Jun 25^th, 2003, 12:48am

Tracy, i may be wrong but i dont think you are suppose to take the relpax and imitrex together within a 24 hour period..did your Doc explain this? atleast this is what my neuro told me...just wanted to share this with you..ofcourse this ole clusterhead had to try it anyway..and my heart had a good ole time for about 30 minutes...be careful mixing it..smiles,nancyc

Title: Re: It's officail!
Post by TracyS. on Jun 25^th, 2003, 9:26am

;D Yeah I am a rotten typeist! That in life is not one of my big worries! Sorry, but get over it! Mixed emotions, yes, sad to have CH but really glad to have a name for this mess and know I am NOT losing my mind. Think about it when the pain comes and goes at the same time each day and year and your labs come back normal. Your reg. doc. looks at you like your nuts. Wouldn't you be glad just to know? The relpax and imitrex together what she said was one of each, each day or two of one in a day. So only two of something in one day. Plus the lidiocaine anytime. She didn't say the lidiocaine would stop the CH but it might make this one spot better in my face. I can have 1/2 a cc up to four times in a hour, per attack. She said if I needed something more call. She asked how far to my reg. doc or hospital they are both less then a full block from our house. She suggested O2 if needed. I am to call her first. Hopefully won't have to, I have had my peak attack this round I think! Bithcy? Well my husband won't notice I can get that way without meds! But thanks for the hint! Well that's enough type-o's this round for you all to figure out! Later for a bit, got stuff to do! Love ya all! :D

Title: Re: It's officail!
Post by TracyS. on Jun 25^th, 2003, 9:43am

Don hey I realized I missed your point your mixed emotions. Sorry man sometimes it just goes over my head! Didn't sleep too well learly this morning! The striod it is a taper of 4 yesterday and today and on down by two days a cylce of meds. Is this good, will it kick it, maybe? Please say I have a fighting chance! ;D