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marlinsfan
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Starting a new life
« on: May 31st, 2005, 10:19am »
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I had a long date with the devil last night. Danced twice with him, but intensity coming down a bit.
 
Now that I know what I have, and find all the good advice and good wishes here, I feel like I have a new life. I am looking forward to getting this devil under some sort of control.
 
I am so happy to have found this place!
 
Off to see the neuro today.
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Re: Starting a new life
« Reply #1 on: May 31st, 2005, 10:37am »
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Good luck with the neuro! Let us know how you get on okay?
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Re: Starting a new life
« Reply #2 on: May 31st, 2005, 11:29am »
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Good luck Jose!!!
 
Print out the info on the link I posted on your other thread!
 
It will really be helpful IF this is what you are dealing with.
 
Best,
 
Eric
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But the blows they have just a little more
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marlinsfan
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Re: Starting a new life
« Reply #3 on: May 31st, 2005, 11:51am »
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Thanks to all!
 
Eric I have a folder with all the stuff. I'm 99% sure I have CH and not migraines.
 
Will post the results of my appt. later today.
 
THANK YOU AND GOD BLESS!
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sandie99
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Re: Starting a new life
« Reply #4 on: May 31st, 2005, 12:02pm »
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on May 31st, 2005, 10:37am, LeLimey wrote:
Good luck with the neuro! Let us know how you get on okay?

Ditto.  Smiley
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Re: Starting a new life
« Reply #5 on: May 31st, 2005, 12:11pm »
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on May 31st, 2005, 11:51am, marlinsfan wrote:
Thanks to all!
 
Eric I have a folder with all the stuff. I'm 99% sure I have CH and not migraines.
 
Will post the results of my appt. later today.
 
THANK YOU AND GOD BLESS!

 
Don't doubt ya......just always want people to be REALLY EDUCATED before diving into some of these dreadful meds and treatments.
 
Read up on all HA (some might present similiar to CH but are responsive to different meds) types of HA too!!!
 
THE International Headache Society framework for headache..the criteria for and all information on all different headache.
 
http://216.25.100.131/members/Sections/members/login/Temp_Frame/frameset _26_06_02.htm
 
Good luck and ya better keep us posted!!!
 
Ex2
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
marlinsfan
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Re: Starting a new life
« Reply #6 on: May 31st, 2005, 3:16pm »
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Thanks to everyobdy for keeping track of me....
 
Just got back from neuro (Can I post his name?)?
 
I walked in with my folder (THanks, Eric!), and gave him a bit of history. Although he's been my neuro for 5 yrs or so, he took over from the prior one who retired. I was diagnosed in another country (Venezuela) many many years ago, then moved to the US over 10 yrs ago. When I moved here, I found this neuro and he also diagnosed me with migraines. When the old doc retired, this new one took over the patients, and simply continued to re-fill my imitrex.
 
Today I told him that my headaches (did not call them migraines) came back. I thought it had been 2 years, but his chart said 3 years since last episode. He asked me a few questions (right out of the cluster quiz), and told me I had CH, not migraines. He asked some more questions, and determined I am getting near the end of the cycle.
 
The guy talked abortive, tranisitional and preventive, like he had read Eric's doc! He told me to continue to abort with Imitrex, and wrote a prescription for 02. He also put me on a transitional plan of METHYLPREDNISOLONE for 1 week. He thinks that by the end of the transitional week, my cycle will have ended. He told me to call him if they came back and he would write a pres for Verapamil.
 
I start the prednisone tomorrow morning, so I'm getting all dressed up tonight for my final dance with the devil! Until next cycle, that is.....
 
I really want to thank everyone who wrote, IM'd, posted, etc. I feel like I'm part of this group, even if I've only been here a couple of days. Will keep posting, and hopefully I'll learn enough so that I too can be of help. Until that happens, all I can do is write some words of support.
 
Thanks!
Jose Grin Grin
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Re: Starting a new life
« Reply #7 on: May 31st, 2005, 3:51pm »
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Jose.....good man!!
 
One thing to consider is that the roids like he said is a transitional med.......if this is the end of cycle then great it might break it BUT for some if not then they come roaring back with a vengence when the taper is finished.
 
Not trying to scare ya....but if there is a chance then you might want to start the preventative along with the roids so that it may build up to therapeutic levels......
 
Just a thought!
 
Also, if you are using imitrex (statdose injections) check out the tip to the left ..it can save ya not only $$$ but meds and hey if ya can get the same effects off 2mg why shoot 6?
 
 
Remain positive and things will always improve!
Hang in there!!
 
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
don
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Re: Starting a new life
« Reply #8 on: Jun 1st, 2005, 6:48am »
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Quote:
Just got back from neuro (Can I post his name?)?

 
You not only can but you SHOULD.
 
Sounds like another CH educated Doc. Starting to see more and more of that.
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marlinsfan
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Re: Starting a new life
« Reply #9 on: Jun 1st, 2005, 7:48am »
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Done. Posted it in the medication/treatment board. I'm new, so I don't know how to copy the link....  Huh
 
Jose
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vig
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Re: Starting a new life
« Reply #10 on: Jun 1st, 2005, 9:11am »
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well done, Jose!
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Re: Starting a new life
« Reply #11 on: Jun 3rd, 2005, 6:00pm »
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Hey Jose -- Glad you got an educated Neuro!! ... I hope you do better on the METHYLPREDNISOLONE (Medrol) than I did.  I didn't react very well to it.  It drove my blood pressure dangerously high, not to mention the lovely shade of red I turned... Smiley
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Re: Starting a new life
« Reply #12 on: Jun 4th, 2005, 10:02am »
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good luck jose i hope it works out and do us a favor when the cycle stops and ya feel better please come back and help evryone that you can here it important, god bless
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marlinsfan
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Re: Starting a new life
« Reply #13 on: Jun 4th, 2005, 2:03pm »
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Thanks to all. Still in my cycle, but been posting and e-mailing and helping where I can too.
 
The methylprednisone worked well the first night (no HA). 2nd night I had a small one. 3rd night it was a little worse. Last night I got a bad one about 15 mins after falling asleep. Then I got another at 5 am, but it was not very severe. Today I've had a droopy eye, but not much more. Imitrex killed both HAs.
 
Tomorrow is the end of week 6. Can't wait for cycle to end.
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