Matthijs Posted May 2, 2014 Share Posted May 2, 2014 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. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 2, 2014 Share Posted May 2, 2014 Hey Matthijs, Welcome to the US! Other than the medical stuff, I hope you'll like it. You very well might receive insurance through the love of your life's employer (you don't necessarily have to be married), so I'd check on that detail if you haven't already. Some insurers are better than others about covering imitrex, but I think they're the exception to the rule. This long heralded "imitrex tip" will allow you to conserve supply while reducing side effect risk: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 And you'll be living in the land of the free-to-procure-yourself-some-cheaper-welding-O2, if insurance isn't doing you right with the medical O2. Yeah it looks to me like it is definitely time to be trying out the high flow 100% O2. I understand the psilocybin truffles there can be mild, can I ask if you dosed at a level where you experienced tripping, and did you detox from imitrex for 5 days beforehand? A fantastic thing about the US is that's where some of the helpful folk here such as CHfather (who is known for helping with some critical, even lifesaving details) come from! 8-) Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 2, 2014 Share Posted May 2, 2014 You should also check to see whether you can buy your own insurance through Obamacare. I don't think you have to be a US citizen to be eligible, but I could be wrong about that. I think legal visitors ("lawfully present immigrants") might be eligible. Here's the website for Minnesota: https://www.mnsure.org/individual-family/families/index.jsp  Do you have someone who could contact them and ask? The "open enrollment" period is over, but I think you get an exception if you are newly arrived in the US, so you could apply when you get here. All guessing on my part, but probably worth checking. Very hard for me to imagine how you could have tried everything except oxygen! As Jeebs says, that's your first priority, whether you can get it through insurance or in some other way. Welcome (in advance) to the US. My own family came from the Netherlands (grandparents). My father spoke Dutch. Quote Link to comment Share on other sites More sharing options...
Matthijs Posted May 3, 2014 Author Share Posted May 3, 2014 thanks for the info so far! what a coincedence CHfather! so i could easily speak dutch to you too then? you guys make me feel welcome already! the reason why i never really tried o2 yet, is because i heard it will make the attack come back quite quickly, like in a matter of hours? i know anything is better then unrelenting attacks for hours, so maybe i should look into it. as to the shrooms, i did manage to squeeze out about 12 hours without an injection, before i tried about 6 grams of dried stuff, god.. that taste, haha anyway, nothing really happened, i was just sitting there, waiting, for nothing. it did give me a painfree weekend though, so it did work , but monday morning at work, the beast was back again, and had to use another shot. tried another 5 grams about a week later, again with about 12 hours after my last injection. this time i was less fortunate, as it gave me 3 attacks at night already on saturday, and sunday i had such painful shadows that i would just call them a low level attack that lasted all day. the monday was painfree again though. as you see, the effect are kind of different with every use of it. it certainly does SOMETHING... Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 3, 2014 Share Posted May 3, 2014 the reason why i never really tried o2 yet, is because i heard it will make the attack come back quite quickly, like in a matter of hours? This is just NOT TRUE. In fact, proper use of oxygen can often prevent later attacks. It's quite sad that such bad information has kept you from using such a valuable and important treatment. You must not have used your injections for 5 days before the shrooms will really work. That's why the oxygen is so important--it makes it possible to make it through all those days without an injection. We have a lot to do to educate you!! :)  Very glad you are here. I'm sorry to say that I never learned more than two Dutch words. Sad, eh? Quote Link to comment Share on other sites More sharing options...
Matthijs Posted May 3, 2014 Author Share Posted May 3, 2014 ill tell you what CHFather, ill teach you some dutch then! since you guys are teaching me! any word in dutch you want to know, ill translate it for you lets start with these ones: Dank jullie wel, allemaal! voor deze geweldige website en gemeenschap, ik wens jullie al het beste toe voor de komende tijd, samen slepen we er ons doorheen! Translation: I thank you all, for this amazing website and warm community, wishing everyone the strength to keep fighting for the days to come, together we will drag ourselves trough this! thanks for the additional info CHFather! the shrooms i tried were just a first experiment really. i am going to try taking them again when my cluster starts, around september, and see where it takes me. i did notice some posts on the forum about this, so ill give them a read, as i do not wish to put my girlfriend, or myself into trouble. anyway, thank you for all the info at this hour! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 3, 2014 Share Posted May 3, 2014 ...i am going to try taking them again when my cluster starts, around september.. This is where I rudely butt into the conversation between you two dutch boys ;D and proclaim that when expecting the CH to start in september, august or earlier can be a very good time to be hitting it heavy with serious busting. The truffles can really shine and work best when consumed before a cycle. They can actually prevent the entire cycle from manifesting for a significant percentage of us (!!). This significantly reduces imitrex costs. I think the fact that you got any results at all with only a 12 hour imitrex detox, and without feeling much in the way of psychoactive effects from the truffles, bodes extremely well for when you bust for real. [smiley=thumbsup.gif] Quote Link to comment Share on other sites More sharing options...
Matthijs Posted May 3, 2014 Author Share Posted May 3, 2014 thanks for the tip Jeebs! will definitely remember that and start it in august Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 7, 2014 Share Posted May 7, 2014 slagroom, aap. (Only two Dutch words I ever learned. Translation, "Whipped cream, monkey.") Hey, really hoping everything will go well for you! Hoping preventive busting will keep you from having to be back in touch any time soon -- but we'll be here! Best wishes. Quote Link to comment Share on other sites More sharing options...
Ajax Posted May 8, 2014 Share Posted May 8, 2014 I will take the OVER on this case with the right busting! You should be our next Board Case Study. You need to get rid of the crutch(injections) and Bust hard. These guys know what they are talking about. You will be mad at yourself after you get the 02 and realize some of the pain you could have reduced... I predict we meet at the annual meeting in the US next year and you are pain free! We are pulling for you! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 8, 2014 Share Posted May 8, 2014 Ajax knows what he's talking about too - he's not aap-ing around, and his words aren't just a bunch of slagroom. Quote Link to comment Share on other sites More sharing options...
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