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ThatHurtsMyHead

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ThatHurtsMyHead last won the day on December 13 2019

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About ThatHurtsMyHead

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    Loving Life!!!

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    Tampa, FL

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  1. ThatHurtsMyHead

    LSD clinical trial

    WOW, great Info... The word has gotten out and picking up momentum!! We can be pain free. Just gotta deal with bureaucracy first... J
  2. ThatHurtsMyHead

    My first share - My experience

    BustOrNothing, Welcome to the family. Your intro was awesome (well as awesome as anything about CH can be anyway). Yea, I don't think anyone gets us accept another CH'er. Well there are a few here and there. CHFather supports his daughter with CH and has been around here helping others for quite a few years. He's a wealth of information on CH (and a really great person as well). Feel free to poke around and ask any questions on busting. The folder Theory and Implementation has lots of info on busting. As well as the ClusterBuster Files folder. Cheers! J
  3. ThatHurtsMyHead

    recommended doctor list

    Updated link: https://clusterbusters.org/resource/cluster-resources/ Cheers, J
  4. ThatHurtsMyHead

    Doctor list

    Here you go. https://clusterbusters.org/resource/cluster-resources/ I'll update the location in the other sticky thread. Thanks for bringing to our attention. Cheers, J
  5. ThatHurtsMyHead

    Doctor list

    Hmm, Our Dr list seems to be lost. Most doctors are lost when it comes to CH, and now they're really lost. I'll try to find it and repost. A mandatory upgrade a few months ago caused a lot of our links to get moved. J
  6. ThatHurtsMyHead

    Oxygen from Primary Care?

    FT makes a good point. When I had insurance years ago, I paid a copay of $15 per E tank. When I lost my insurance the Oxygen company charged me $8.10 per exchange... Had I known not having insurance was cheaper, I wouldn't have fooled with insurance to start with. J
  7. ThatHurtsMyHead

    50 yr old Newbie

    Dr J, (hey, do you play basketball?) I ++ what others have said above. 100 percent high flow Oxygen is a life saver. You have to get on it before the attack ramps up. If you feel one coming, go ahead and hit the O2. The earlier you get on it, the better it works. Also, my go to are energy drinks. For us CH'ers, for some reason I think everyone I've spoken with can drink them anytime at night and still fall asleep. When I get a night attack, I hit the O2, and carry the tank to the fridge and get an energy drink. Slam half of it. Back to the O2 and sit down (Rocking for some reason seems to psychologically help). Hit the attack quickly with those two and I rarely ever have an attack last longer than 10 minutes. If I don't get on the O2 early, it doesn't do any good. I can huff for an hour and nothing but pain. Like CHF said above, checkout the list of common triggers. I've found I can reduce my attacks to less than half if I stay away from any trigger foods. My biggest are chocolate, alcohol, fermented cheese (the fake cheese whiz stuff is fine). Cheers, J
  8. ThatHurtsMyHead

    Benadryl

    dehabel, I think the most knowledgeable person around with the D3 regimen is Batch. I'll drop him a note and see if he can check in here to answer your questions. He's a wealth of knowledge on vitamins. Cheers, J
  9. ThatHurtsMyHead

    Emgality - so mad, am I wrong, will it work differently

    dehabel, Sadly, your doctor is clearly in the dark on dosage. At the CB conference last year there was a really good presentation on Emgality. It was stated and backed up by multiple people in the crowd (that were in the Emgality trial). The standard migraine dose does nothing for those of us with CH. If I recall correctly, I think it also only helps with episodic. That Chronics it doesn't work at all. (I'm sure someone will chime in here and correct me if that's backwards). Sometimes doctors are clueless and sadly some have an ego that prevents them from getting the education to help their patients. IMHO, I'd fire him and get another doc (if you can). I concur with your decision on dopomax also. (as the CH community commonly call it). I know it does help some people, but at what cost? I couldn't work if I didn't have my wits every moment of the day. Keep us posted, J
  10. ThatHurtsMyHead

    Sad but Necessary Action Today

    fillzeros, You're correct. It's not something I ever look forward to. Thankfully it's a very rare necessity to ban someone. I know everyone of us with CH have days our fuse is short. I try to temper any action with the understanding that I don't know what that person is going through right now. They might just be having a moment. So I try to assume the person will come around if approached from a different angle. The vast majority of the time those of us here on the board can have an argument, but all the while we know the person at the other end is a friend. At the end of the day I want to see that person at a conference and give them a hug, even if we disagree on something. When attacks go from the subject matter to personal, it interferes with the ability to reconcile. Cheers All, J
  11. ThatHurtsMyHead

    Sad but Necessary Action Today

    All, It's with a heavy heart I have to do something today that I've only had to do once before. Ban someone from the board. This action was not taken lightly. I'll leave details out, but nearly every personality conflict on the board for the last year or so all involve one poster. I've asked politely. The mods have asked politely. This poster has received warnings and yet continues to post inflammatory remarks. There seems to only be one action left so that members here can focus on helping one another, that's the reason we're here and the reason the board is here. To help, not hurt. We all have enough hurt in our lives with CH already. Love to all, J
  12. ThatHurtsMyHead

    BOF

    BOF, The leader board is simply statistics on who's posting. It's not a race. I didn't think anyone even looked at it. I don't know why you would get bent out of shape about some insignificant statistics. Helping people here is the primary goal. Not trying to be first, or best, or etc. There are lots of things I care about with this board and the CH community. How the software vendor calculates the leader board isn't one of them. It really doesn't matter when there's someone out there with a CH-10 hit that needs some words of encouragement. J
  13. ThatHurtsMyHead

    BOF

    BOF, Ok, this is sorta getting out of hand. If you're referring to the Batch thread on Covid19? You should remember that was HIS thread, and you started poking at him because you didn't like what he had to say. If you didn't like what he had said on his thread, you shouldn't have kept at him... It's easy to ignore a thread you don't like. Seriously... You've pulled this with several others on the board and while you do try to be helpful you repeatedly call out people for bullying when in every instance you're the first one posting inflammatory remarks on someone elses thread. You need to just stop. EVERYONE is allowed to speak freely here, not just BOF. J
  14. ThatHurtsMyHead

    BOF

    BOF, Sorry, but I'm a bit baffled here. I don't see any bully posts, nor have I seen any alerts to such? (I just flipped through the alert history as well). All anyone has to do to get a mod to check in is report a post. All the mods really do a great job responding. J
  15. ThatHurtsMyHead

    Anyone need a Zoom Chat?

    This is such a great idea. I hope people that need it are making use of the ability to connect with our CH family. Those with CH really need connection and support. Cheers All! J
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