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Cluster Headache Help and Support >> Getting to Know Ya >> new to this but not CH
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Message started by Emjay on Mar 14th, 2009 at 9:14pm

Title: new to this but not CH
Post by Emjay on Mar 14th, 2009 at 9:14pm
HI,

I just thought I should introduce myself even though I have posted in response to others!

I have been having these charming experiences for 18 years.  Even though I went to the doctor right away, I was treated for sinus infections and then for migraines.  Then, my PCP thought that my headaches may be related to lupus, which I also have, and the rheumotologist ruled that out.  

I would describe my cycles which are from February through May, occasionally the end of January through the beginning of June to doctors but no one thought of CH!  I start with night hits, 1am, then add mornings, 6am, then afternoons, 1pm, and I am in agony if I don't DO something within the first 5 minutes!  Each hit, if not responsive to treatment lasta about 3 hours.  Finally, my doctor thought, "You have CHs! You need to see a neuro!"

Last year I went to a neuro and he said, "Yup!  CH!  Let's do a prednisone taper and put you on Verapamil.  Here is a script for Imitrix injections."  The prednisone worked, an 18 day taper, and the verapamil (240mg) was effective.  Wow.  First time I actually enjoyed spring!  I live in New England and winters are way too long so spring "should" bring joy!  This year, I started with the headaches in January so we increased the Verap, put me on another 18 day taper (which helped for a week) and then increased the Verapamil again.  With 480mg of that, Imitrix for acute episodes, and I have tried O2 and found it to be effective, too.  

Sometimes I have tried to use Maxalt ME with a Rock Star and coffee as a chaser and believe it or not, that works and I do NOT get wired BUT I prefer the O2 and the Imitrix.

I work on the road a lot (home based clinical work) so the Imitrix and Rock Star are my back up plan.  At home, it is O2.  I also started with 10mg of the Melatonin at night and I think that it helps, too!

I am incredibly grateful for this site!  I feel less isolated and I have better CH management because of the suggestions made here like the O2 and the Melatonin.

Thanks to you all for being here!

May you be filled with PF days and nights! :)

Title: Re: new to this but not CH
Post by ClusterChuck on Mar 14th, 2009 at 9:41pm
WOOHOO!!!!

YOU are a person that has your stuff (you though I was gonna say shit, didn't you?) together!

I love hearing that!  And even more, I LOVE hearing that the help originated from this site!  THAT is what we are here for!

Keep up your fight against the beast.  You are doing GREAT so far!

Chuck

Title: Re: new to this but not CH
Post by Guiseppi on Mar 15th, 2009 at 12:38am
WOW! Both you and the neuro have your ducks in a row! Welcome to the board look forward to getting to know you!

Joe

Title: Re: new to this but not CH
Post by George on Mar 15th, 2009 at 1:20am
Welcome, Emjay.   [smiley=wave.gif]

Can't add much to anything that you and your (obviously) good doctor have come up with, but I look forward to seeing your contributions to this forum.

Best wishes,

George

Title: Re: new to this but not CH
Post by Melissa on Mar 15th, 2009 at 8:04am
Hello Emjay, welcome to your 2nd home and to the family. :)

Looks like you're pretty up to speed on your condition, but holler anytime you need anything!

hugs,
:)mel

Title: Re: new to this but not CH
Post by coach_bill on Mar 15th, 2009 at 4:31pm
Welcome,

           Sounds like your a pro beast ass kicker. Thats the spirt!!!

                              Coach Bill  8-)

Title: Re: new to this but not CH
Post by Emjay on Mar 15th, 2009 at 5:10pm
Thanks for your support!  I feel blessed to have you all here!  The suggestions have reinforced some of what my neuro recommended and added to what we could do.  He is very collaborative, fortunately, and considers pain as something he has to beat!  

I learn so much from visiting here!  I also sent the OUCH pdfs about CH to my supervisor at work and the social worker with whom I am often paired so that they would have a context for when I can't make a home visit...  They have been very understanding...  No migraine cracks!  Ugh.  

I love being PF and wish it for one and all!

Title: Re: new to this but not CH
Post by BarbaraD on Mar 17th, 2009 at 5:29am
Welcome to Clusterville... I just love to hear a "good" story. Glad you're having a "good" experience with this cycle.

Keep us informed - it (seriously) brightens us all up....

Hugs BD

Title: Re: new to this but not CH
Post by PollyPocket on Mar 18th, 2009 at 8:35pm
Hi Emjay :)

Glad you found a cocktail that works for you and that your dr is actually LISTENING.

I love that youve been so proactive in  your own healthcare!

Keep on fighting the fight, and welcome to the site

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