Elevation and barometric pressures make us worse. I've traveled a little since ptc and the difference is pretty amazing. At sea level, my head is much better than in Ohio (home). Rain also makes me hurt. I'm still wishing I could win a house at the beach where it doesn't rain often - cure?!!!

I agee with the previous poster. Rain is bad. I've also noticed differences based on barometric pressure.

I live in New York. I know there are people from all over on this site. I think it's more body chemistry. I really feel this happened to me after my first pregnancy. (looking back) I think it has to do with hormones. I kind of feel like this is why both of my children had language delays. I def. think there could be some type of "profile" for it, maybe having to do with location, maybe something else.

Fast changing weather really affects me. If it's sunny and it quickly clouds over and turns to torrential rain, it's a few days of extra pain. Is that the barometric pressure going up or down? Down, I think.

This is a brilliant thought! Not just in terms of what triggers us, but the possibility that locale might have something to do with who acquires IIH at all. I lived in a small town in Northeast Texas for a few years until I learned that this town has an unusually high rate of childhood cancer. It turns out that during the 50s, Agent Orange was dumped into the river upstream from this town. You just never know what environmental and man-caused factors may be in play in any given location until someone adds up the numbers.

I live in hilly Central FL... and haven been away from these low elevations since Dx... with occasional trips to the coast. No difference i can tell just from that.

I had as many problems during the dry season as now during the wet with daily thunderstorms.

Diamox was working for me when I started taking it during the dry season, but no longer does. It's no longer working did rather correspond with the onset of our Monsoon season, though it still fits the time period for many people who have success with it that quickly fades. So I'm just assuming bad luck with meds... this isn't the first med I've taken that has worked short term then become ineffective pretty quickly, although those meds were for other medical issues.

All that said... when a tropical storm/hurricane comes close to us all bets are off and I'm completely miserable... It's worse than PMS/period week.

I agree with frostbite for sure! I live in Colorado and have been to sea level as well. Big difference. I'm in the mile high city, so it gets pretty bad. I just got home from camping too, where I was at an elevation of about 10,000ft. Needless to say, I spent most of the trip laying in the trailer on my back. Headaches were horrible. I firmly believe that barometric pressure has a lot to do with it too. During storms coming in or leaving seems to effect me.

http://content.usatoday.com/communities/greenhouse/post/2011/03/42-disease-clusters-13-states-toxics-environment/1#.UA4Kk_XdneM

Disease clusters relating to various diseases.. worth a read! Cities are about 2/3 way down.

I live in northern CA (north of Sacramento) and have for my whole life. I was also born on an Air Force Base here in CA and conceived on one in Arkansas.
I was just trying to remember how many of us have mentioned being military families, but I'm drawing a blank. Anyway, is it something that many of us have in common? My parents were both Air Force and were both stationed in several countries overseas.

Has anyone joined the IIH Research Institute? I think that is what it is called. It seems like that would be a good place to collect that sort of data. There has to be more to it than weight because I could loose some, and my kids are now 6 &7 and you can only claim baby weight for so long ;) But last week in the ER the neuro resident walked in my room and said, OH, you don't look like our typical IIH patient. I think hormones, I know I have a low or faulty immune system, I've battled depression probably my whole life, had 2 terrible pregnancies and was on bed rest, have had tons of sinus infections, blah blah. Maybe I will join that site and start inputting all my crazinesss ;)

Hmmm, this is fascinating! I live in a high elevation area. My PTC symptoms have been progressively getting worse since I moved here...that's something to think about.

I can also tell when the barometric pressure changes, rain is not friendly.

Sorry to jump in again but now that we're on altitude, I wanted to add that I grew up in Colorado. They say folks who grow up at high elevations develop larger hearts to compensate for diminished blood flow. It wasn't for several years after I moved to Texas that IIH became an issue. I did notice, however, that when I went to Colorado for a visit last summer, I had monster altitude sickness; something I'd never suffered from before. That was a strong indicator to me that altitude and barometric pressure are major factors in how well I'm perfusing and how good I feel. Once i got back to practically sea level, I felt markedly better.

That's interresting I was born and raised in Northern NH near Mount Washington's base. Granted I did not get diagnosed till last November but still. I am still learning my triggers.