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Showing content with the highest reputation on 09/12/2019 in all areas

  1. 1 point
    Thanks, Freud! I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage. Fingers and toes crossed here that the D regimen is doing some magic for you. Anything else to report about your appointment with McGeeney?
  2. 1 point
    So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines! He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru! I never tried to fill it. I have started the process to get it... let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work! I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140!
  3. 1 point
    I have learned that you need to talk to the anesthesiologist prior to surgery. Let them know that you have CH and would appreciate no epinephrine in your meds from them as this can set your head off! They can do this. Also, explain that you need access to O2 at 15lpm minimum - 25lpm is better, with a non-rebreather mask waiting for you when you wake up! I have done this for 3 surgeries last year and every time, it worked! Yes, they should also know about the verap. But, apparently, if you let them now the score, they will help you. I had 'sedation' for two scopes last year. Well, I got hit from that little cocktail. I was out, but thrashing all over. So, they went to general to finish the procedure. They told my husband it would be 30 minutes or more before I got out of recovery as they went to general to finish. Imagine their surprise when they had to go right back out and tell him I was up and huffing O2 when they returned to recovery in just minutes! I left in less than 10 minutes and with no pain. Best of luck with your surgery!!
  4. 1 point
    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her! She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it. The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else. It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through. For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack. I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them. I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there.
  5. 1 point
    Bravo @Batch, Its like explaining a cardiopulmonary bypass strategy... enjoyed the physiology. I have a real hard time hyperventilating. And for me when I force myself to do it. Usually an hour after my normal routine of using a regular old non rebreather mask and I’m at the I’ll try anything point. I break out the opti with the mouth piece and do the whole routine. Each method and no response. Well no more than if I go back and just breath the 25LPM gas. Now I know what you’re going to say next. You waited too long. But I have done it as a first line for over a month and I get the same results. So I stay comfortable, breath at a fast rate w my plane Jane mask and if the O2 is going to work I abort in 2-3 min stay on for 10-15. Unless I fall asleep and sleep through my timer. Lol did that last night. Ran through a fresh M tank. Fortunately I don’t have COPD w CO2 retention... But 99% of my nocturnal CH alarm clock attacks (every 45-60min) respond quickly and abort. Few of the nocturnal attacks that wake me up already at a kip 10 and no 1-3min ramp up take 30-45min to break if they break. But the longer I’ve been CCH I wake up before the CH starts! And I’m like hmm I don’t have to pee WTF did I wake up for. Then I try to go back to sleep and then the ramp up starts. It’s real strange. So when I’m alert enough to know what’s going on. If I wake up suddenly I just hit the O2 for 10 min and go back to sleep. I know sience as well well as friends w CH say hyperventilating is the way to go as well as the beautiful opti mask is superior (I love the way it feels on my face but they purposely don’t want you to fall asleep w the mask on and I get it. I want to lie back and breath or pace and breath. Not hold a mask or mouth piece. Every bit of comfort helps when I’m mid hit which is most of the day. TLDR: Thanks for the post Batch, I support and suggest all of your suggestions to other CHers. But it doesn’t make a damn of a difference to me sadly. I’m just not responding normally to any of the treatments but they still help a ton I guess the next step for me is a 30-40Lpm reg...Apria is going to love that lol Unrelated note our greek friend’s GF is pain free after starting the D program and Benadryl. I asked her to fill out the survey and post about it... she is CCH too =-)
  6. 1 point
    And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month... I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study...