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

  1. 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?
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  2. 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 tod
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  3. 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 hi
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  4. 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 ha
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  5. 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 res
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  6. 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
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