Greetings fellow survivors, im matt, 27 and currently living in the netherlands. have been episodic CH patient since i was about 12. over the years it has grown to about a 6 month cluster, and a 6 month break. usually starting round september, right trough the holiday season, and ending around februari and march. as many of you, have tried quite a bit of things, even the shrooms, wich are legal to buy here. ofcourse if they actually worked, it would be even better! so far only my injections work, allthough i have to admit i havent tried oxygen yet.
i get about 3 attacks a day, pretty much everyday, for 6 months, at least one at night, and one in the morning.
later this year i am planning on migrating to the US, to live with the love of my life, who just got a great job in Minnesota. im pretty excited about it all, but i am also nervous, as i am not sure how i will cope with my CH. i heard some pretty bad stories from you all (reading this forum for the last 5 years or so) about only getting a few injections a month, and stories of not being helped or supported by any healthcare facility or insurance company.
i was wondering if you guys had any tips, and information about how the healthcare system works in a nutshell, what to expect, and what not to expect. whilst im here, i can sure stock up on injections, but those will only get me trough maybe a few months. after that, im all out.
still reading my rant? great!
basically my question is, how do you guys in the US cope with your CH's, while it seems that the entire healthcare system just wants to ignore us, or make us pay heavily (financially) for a condition we never asked for.
thanks for any replies, and warm painfree wishes, from matthijs.