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Showing content with the highest reputation on 01/25/2016 in Posts

  1. Jannim, I was a welder until I retired, your boyfriend probably has access to everything he will need for a temporary O2 set up to abort CH until he can get the recommended protocol. I will be glad to walk him through setting it up and how to use it if he wants.
    2 points
  2. Well, the first things you can do are to help him, push him, whatever it takes, to get oxygen again and, at least for now, to get that "epi pen," which almost certainly was injectable sumatriptan, called Imitrex. Sometimes, some people with CH don't advocate for themselves as well as they might, and they need help from others. We have about a hundred answers for you, or him, here, for almost any question you/he might have. I/we could suggest a whole bunch of things here for you/him to read, which would lead to things to do that he probably doesn't know about but that make a big difference for lots and lots of people. Are you interested in treatment information that could help him? Can you get him to show up here? In the short run, he should get energy shots (such as 5-Hour Energy) or energy drinks (such as Monster or Red Bull), and drink one at the very first sign of an attack. That helps lots of people. Some people find that they get preventive benefits from drinking those drinks in advance of attacks (for many/most people with CH, attacks come at predictable times). Even with this one topic, we could go on and on. One prominent person here finds the V-8 Fusion energy drinks work well for her; there are many types and "strengths" of shots and drinks (a little 5-Hour Energy shot is actually stronger in caffeine than a big Red Bull, for example); some people find that a strong cup of coffee works well; some people like their energy shots/drinks icy cold . . . .Like I said, there's a lot of sub-info under a lot of different topics. If you, or he, want answers or guidance, just ask. As for your specific question, you just need to let him guide you about what helps. A lot of people with CH -- most, I would say -- don't want anyone around during an attack; it's just another thing they have to worry about. Some don't mind quiet company. Some can figure out a way for another person to be helpful. Some kinds of touch can be helpful to some people, but usually only toward the end of an attack, I think. In my opinion, you have to let him know that whatever he wants is okay with you, and then respect that. He might be afraid that he'll hurt your feelings by asking you to stay away or giving you only a limited role, but you have to let him know that it's not about you. I am a supporter of a loved one with CH. There is nothing worse for me than to not be able to be with her, or help her, when she is suffering, but it's not about me, and that's the way she prefers it. Supporters have their own torture to live with in that regard, but it doesn't compare to a CH attack. But like I said first, you can help him most by getting him moving toward getting the medical and non-medical stuff he needs, particularly and most urgently oxygen. Others might say more about oxygen, but in essence he either needs to get a doctor's prescription for it or set up a system using welding oxygen. He will want to optimize the system in ways we can tell you about. I think you can also help him a lot by getting him to come here, with people who understand. But if he won't come here and you have to be the intermediary, then please keep asking questions (or just tell us you're interested in a list of key things to read or something), and you'll get information that can make a huge difference for him (and therefore for you).
    1 point
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