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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › new to this but not CH

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new to this but not CH (Read 1425 times)

Emjay

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new to this but not CH
Mar 14^th, 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!

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: new to this but not CH Reply #1 - Mar 14^th, 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
Back to top	CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame. Keep fire extinguisher available, and charged. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: new to this but not CH Reply #2 - Mar 15^th, 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
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: new to this but not CH Reply #3 - Mar 15^th, 2009 at 1:20am Welcome, Emjay. 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
Back to top	"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535) IP Logged

Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: new to this but not CH Reply #4 - Mar 15^th, 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
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: new to this but not CH Reply #5 - Mar 15^th, 2009 at 4:31pm Welcome, Sounds like your a pro beast ass kicker. Thats the spirt!!! Coach Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

Emjay

CH.com Junior

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I Love CH.com!

Posts: 78

Re: new to this but not CH
Reply #6 - Mar 15^th, 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!

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: new to this but not CH Reply #7 - Mar 17^th, 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
Back to top	What don't kill ya, Makes ya stronger! IP Logged

Jennifer CH.com Alumnus Offline Posts: 3265 Supply, VA Gender:	Re: new to this but not CH Reply #8 - Mar 18^th, 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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