Hi everyone,
This is my first post using my Ryder login. I want to say I first came across CH.com in the late 90's, but can't be sure. I remember posting about Amerge back then under a different login, but the boards don't seem to go back that far. I'm a 40 year old husband and father of 2 young children. I've been episodic since 1986.

I was misdiagnosed for the first 7 years and just dealt with it. That was hard and isolating. Once diagnosed, I went through many variations of pill cocktails, nasal sprays, injections, but the response was never consistent. Like most of you, drug A helped one time and maybe a couple more, then didn't. That sucked.


The Internet came along and I got on CH.com and read the boards. I think that was in the late 90's (?). This site, and all the wonderful sufferers and supporters who take the time to read and post, have made such a difference in my life and really helped me through some of the toughest times in my life. I visited many ER's in my time and battled emotional lows that took everything I had to get through. It helped show me what I'm made of, helped me appreciate my PF days, and raised my compassion level to extents far beyond my expectations. Knowing what I know now, I have nothing but the utmost respect for everyone on this site, especially you chronics. I realized after reading some of your shared experiences how to put my pain in perspective.

I recently happened to read Linda's plea for people just like me to introduce ourselves, and realized it's about damn time I did  
Yes, I'm starting another cycle. I used to get hit around March/April and again in the Sept/Oct (spring/fall, barometric pressure changes accompanied by temperature changes seem to be a factor).

My cycle used to be 2x/year, each lasting 1-3 months. Ever since I quit smoking ('05), discovered Prednisone ('05), Kudzu, and with the help of this site, got my O2 tanks (battled insurance companies during my '05 episode, but had them ready for the next cycle), I've gotten hit 3 times but the CH's lasted only 1 month (!!) and with O2 I managed to abort dozens of them, with only 2 that exceeded Kip 5 (WOOHOO!!!).

This is my routine now which I've used successfully for the last 2 episodes:
between clusters I stock up on Prednisone (taper), O2 tanks (still only have a 15 lpm valve but I now know about the higher flow rates), Kudzu, strong coffee, and Maxalt pills.
When I get the first shadows, I:
1. Contact  my neuro. He is not on top of it by any means, but will write me the Rx's I need after I educate him (armed with knowledge from CH.com).
2. Start my Prednisone taper (50mg for 8 days, then 40mg for 1 day, 30, 20, and 10). I have yet to do Varapimil (sp?), but if my routine fails I will.
3. 4-6 pills of Kudzu per day (morning/afternoon/night).
4. I abort with O2 at 15lpm (got an E tank with a rebreather mask).
5. Since I can't carry my tank with me everywhere (work, mainly), I carry Maxalt in my wallet 24/7 and pop one if I get scared, then run home to my O2.
6. I have detailed spreadsheet I keep as a googledoc, because it's accessible from anywhere, that I enter all relevant information about my episodes (Kip, meds, weather, results, misc) that I've kept since my '05 episode).

I would love to hear about a portable O2 solution. I have to go to court for jury duty Monday and explain to the judge why I shouldn't be selected as I'm starting a cycle.

That's me. Nice to meet you all and to finally make my first post after hovering around for 10+ years.
O

hi there, I like the idea of keeping a googledoc, have to check into that...

welcome to the mad house, your arms must be tired after all that hovering, glad you finally landed into our open arms.

Mark (loves the little feathered friends)

Ryder wrote on Oct 17^th, 2009 at 9:41pm:
This was a HUGE milestone with me and CH. 

No smoking or bystander smoke = reduction in total CH, shorter cycles, reduction in frequency and intensity (kip). 

I owe seeds a LOT of thanks too