Steve A Posted January 30, 2020 Share Posted January 30, 2020 I wanted to take a second to send a HUGE thank you to this website and it’s moderators. Four weeks ago, after a 15 year absence, my CH returned. And with a pain level I don’t remember. I didn’t know what to do and couldn’t remember my drugs I used to take or if there were even any changes in prevention and treatment. I went to my own general practitioner and as I explained what was going on, he began thumbing through his drug catalog, gave me a referral and that was that. I called the doctor he referred me to and he couldn’t see me until the end of February, clearly (or hopefully) beyond my need to see him. This past week I was in hell. Multiple attacks per night and then attacks while I was at work and driving to work. All I had were triptans at my disposal and those were clearly messing with my cycle, making it impossible to predict and creating multiple attacks per day and night. Wednesday evening, after having three kip 7 or 8 attacks, I found myself in my partners lap sobbing. I couldn’t find someone to help me an I didn’t know how to fix it. That morning, I found the list of recommended doctors on the site. Curiously my referred doctor was not there, but there were three others. One five miles from my home. I called them fully expecting to get the, “we aren’t seeing new patients until later next month”. But instead, after telling her I suffer from CH, she asked me if I was available this morning at 7:00am. Needless to say, my emotion bled through the phone. I felt saved. And this morning I went and met the most amazing people. They knew what CH was. They knew how much we suffer. They told me that CH sufferers always get bumped to the front of the line. They knew of all the current treatments and gave me the options of choosing. And to top it off, at 7:30, I started an attack. The doctor injected me with imitrex, guided me to a quiet room, and let me deal with the beast in private. When I came out, I had a bag of goodies that I had recently paid an arm and a leg for, and several reassuring smiles that made me know, I am in good hands. And I wouldn’t have found it if it weren’t for this site. I am eternally grateful. I don’t know if I found my personal fix, but I found a trusted partner in the process. Thank you. 4 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 31, 2020 Share Posted January 31, 2020 What have they prescribed for you? I hope you'll consider the D3 regimen, which they probably don't know about (but I suppose they might). https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people Quote Link to comment Share on other sites More sharing options...
Steve A Posted January 31, 2020 Author Share Posted January 31, 2020 So I got all my D3 stuff today and I’m set to start that on my own. I did mention it to her during my consultation and she said she had heard about it but didn’t know enough about it. She didn’t poopoo it and said that it didn’t sound like it would hurt. She prescribed a prednisone taper which is pretty mild because I am likely nearing the end of my cycle ( at least I hope so) and I’m going in tomorrow morning to Get my three Emgality shots. I’m going to confirm with her that she sees no problem with me doing the D3 in parallel with this. I realize that I won’t know what ultimately “fixed” considering I’m going down three paths, but Whatever it takes to get my life back. We did talk about O2 and when the beast returns next year, I’ll likely go that route instead of the triptans to abort. Any holes in my plan? 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 31, 2020 Share Posted January 31, 2020 Prednisone, Emgality, and D3 to prevent, and a triptan to abort. As long as there aren't any adverse interactions among those things, and since you acknowledge that you won't learn much about what's helping and what isn't, and as long as you know that if you have a future cycle O2 is fundamental, I don't see any holes. If your triptan injector is 6mg, you will want to think about splitting your doses, since most people can abort an attack with 2mg or 3 at most. Maybe you have a 3 or 4mg injector. If not, here's info on splitting: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Since your docs seem to be enlightened, you might see whether they'll prescribe it in vials so you can measure out your own doses. Quote Link to comment Share on other sites More sharing options...
Talia Posted January 31, 2020 Share Posted January 31, 2020 Can someone please give me the complete D3 regime recipe list and dosing?? PLEASE. THANK YOU! Quote Link to comment Share on other sites More sharing options...
FunTimes Posted January 31, 2020 Share Posted January 31, 2020 Here is the link but I am sure Batch will be able to help you out soon. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people 1 Quote Link to comment Share on other sites More sharing options...
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