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regarain28

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  1. Thank you so much for the responses and the guidance, I will be getting my levels checked on the next few days and am thinking of getting them checked every two weeks for a bit so I can ensure I am on the right direction. It seems like my clusters read my message about my improvement and didn’t appreciate it much. I had a particularly rough night and am already on 5 hits before noon today, I am not sure what the cause is. I am wondering if there is any negative interaction with the D3 regimen and prednisone? My thought is I can get a prednisone taper for 2-3 weeks while I get my D3 levels up and as I taper off then would hope for a minimal slap back since my levels will be elevated to a therapeutic level? I’m sure others have thought about this and/or tried it. Happy Thanksgiving!
  2. Hello All - @spiny @Bohm I just wanted to jump on here and provide an update on my progress: Normal Medications: 440 mg of Verapamil per day & 300 mg of Emgality once a month Abortives: Sumatriptan (although I have been off of this for about 2 weeks) and O2 Vitamin D3 Regimen: Today is my 4th day on the accelerated Vitamin D3 loading phase, I am currently taking 140,000 i/u per day along with the co-factors that Batch lists in his regimen. I am also currently, taking 25mg of Benadryl (4x per day), 3,000mg of quercetin, 1,000mg of Turmeric to account for a potential allergic reaction. Over the past couple of days, I have gone from 6-7 clusters per day, down to 4 per day. A couple of details that I am noticing is that the clusters do not ramp up to climax nearly as quickly as they used to, and also the 4 per day are all around KIP 3-5. So that is great news! The worst of the headaches are nocturnal which seems to be a consistent theme, so I wonder if there is anything that I can do to help that? Additionally, it still takes me anywhere from 20-30 minutes to abort each headache with O2 (I have the Cluster buster non re-breathable mask and bag as well as a 25lpm regulator). My question now is, do I taper down on the Vitamin D3 slower, or do I come right back down the original loading phase of 50,000 I/U per day until I begin seeing more improvements? Thanks Everyone!
  3. @spiny and @Bohm thank you both for the responses! I was still only doing the 50,000 a day loading so I am happy to hear that there is precedent to go much higher. I will start the accelerated loading today and see how it goes. @Bohm I know everyone is different but how soon did you begin to see a favorable response to the 140,000 per day loading? thanks again
  4. @spiny Thanks so much for the response. A few responses to your questions along with more follow up questions! Yes, I had my vitamin D levels checked prior to starting and I am at 31 so on the low end, which is not surprising. I am looking to schedule additional bloodwork in a few weeks to get an updated level as well. I am currently taking all of the co-factors and started the full regimen 5 days ago at this point. Because, I had an increase in frequency I am now adding the Quercetin at 3mg per day, and this is my 2nd day of that added dose. Is there anything else I could do to ramp up, have people tried to take more Vitamin D3 than 50,000 per day? One item of note is I am a Diamond Headache Clinic patient and just went through their in-patient Histamine protocol where they essentially put patients in a continuous IV of histamine to de-sensitize the potential allergic reaction. The same day I was released I was hammered with huge headaches and have been since, so while that clearly did not work, I am happy that I can now essentially cross that off the list. The reason why I raise this, is I wonder what, if any, impact there is to the D3 regimen and addition of an anti-histamine since my histamine levels are currently elevated from that treatment? For example, I wonder if I should be taking more than 3mg of quercetin to offset this? I am also wrapping up a DHE regimen which is a vaso-constrictor much like Sumatriptan, so I wonder if there is any blocker from that to this D3 or anti histamine treatment? Apologies, for the long winded response!! Really appreciate the feedback!
  5. Hey Everyone, I am new to this group and forum and in only a week I have found so much amazing information, so want to thank everyone for their willingness to help! I have had clusters for about 15 years now, and have been Chronic the last 5 years. I am have read about and started the D3 regimen and I am on the 4th day. While my clusters have not stopped, I feel something happening already because intensity is down, however the frequency has gone from 3 a day to 6 a day, has anyone experienced this early on, during loading phase? One question I had was regarding the potential for allergic reaction getting in the way of the Vitamin D. Like I mentioned I am only on Day 4 of the regimen, but I wonder if it is a good idea to begin a Benadryl/Quercitin dose now, as I am in a pretty tough spot and want to make sure I am doing everything I can? Any thoughts are much appreciated!
  6. Can someone point me to a video of voluntary Hyperventilation? I am looking to give this a shot, but I am not convinced I am doing it correctly?
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