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Everything posted by MaxHead

  1. Welcome cgold. Sorry you need to be here but glad you found this place. Amazing community of people who have a lot of knowledge to share. Regarding the chronic question, it can only be determined by a look-back diagnosis. In 2020, the International Classification of Headache Disorders {ICHD} changed the definition of chronic to: "Cluster headache attacks occurring for one year or longer without remission, or with remission periods lasting less than 3 months.") So technically, you have to kind make it roughly through a year under those conditions to be considered chronic. One thing to keep in mind, a small number of people do go between episodic and chronic and back again. I began as episodic and have been chronic since May 2018. But there are people who go back and forth. As you'll hear over and over, everyone is different. So don't be too surprised at anything.
  2. I actually grew up closer to Cherry Point on a farm in eastern NC (near Kinston). Been in Asheville for 15+ years. You should visit sometime if you haven't been in a while. It's quite the destination now!
  3. I encourage everyone to read this. It's a great article to share with friends, family, and people that really don't understand what we're up against every day. It's amazing to have something recent from a nationally-recognized publication like the Washington Post to share. Please take advantage of the timing and relevance of the article. With 11,000 Clusterbuster members sharing this article we can help leverage the great work that Bob Wold and others are doing on our behalf. This type of media coverage is difficult and rare to achieve for our disease. This is a great community that has done more for me personally than you'll ever know. I'm so grateful to Bob and each of you for your contributions, support and encouragement for survivors of Cluster. Thanks!
  4. https://www.washingtonpost.com/health/cluster-headaches/2021/04/02/66ac73f0-8cdc-11eb-9423-04079921c915_story.html Great, in-depth piece yesterday that brings visibility to Clusters, our battle, and the struggle for acceptance of psychedelics as a treatment. Thanks to Bob Wold, Dr. Emmanuelle Schindler, Dr. Larry Schor and others for their continued support and pushing the message for the benefit of us all
  5. I would recommend that anyone check with your GP before trying this diet. There are potential downsides including possible liver or kidney problems. These can likely be mitigated if known. Especially with all the meds most of us Clusterheads have been taking at one point or another, some liver or kidney damage isn't a stretch. Be safe out there!
  6. From what I've read, it will be two years before this will begin, but you will not have to be from Oregon and you will not have to even have a medical condition. You will not be able to purchase psilocybin, only receive treatment/therapy by a licensed practitioner. You will have to be pre-screened for the therapy and then be administered the psilocybin by that practitioner. You must remain in their care until the drug is out of your system. This should be a boost to the Oregon tourism industry as Clusterheads travel year-round for busting "trips"! We need to find practitioners who understand cluster and will give Clusterheads package deals for multiple dosings.
  7. I tried Emgality for about 5 months. Unfortunately, this was about the time I was shifting from episodic to chronic. Emgality does not help CCH and that was the case for me.
  8. I'm not sure where she ended up, but Dr. Starla Wise was my neurologist at Wake Forest Baptist Hospital in Winston-Salem, NC. She just relocated two weeks ago to Ohio and she was considering offers from the University of Cincinnati and Wright State. She was fantastic with cluster headache treatment options. Very open to non-traditional therapies but also very smart in advising you regarding risk/reward. She is a bulldog for you if she knows you are trying everything you can to get better. She went to war with BCBS of NC and got me approved for Emgality for Cluster (sadly I was chronic by the time they approved it and it ultimately didn't help me). She also went before the board at WFBH and got approval for me to try self-administered in-home SPG nerve blocks (first patient ever approved for that at WFBH) which was no small feat. My wife and I are still incredibly sad she left but WFBH has another neurologist with Cluster specialty (actually helped trained Dr. Wise) and they have other staff that also work with Cluster. But we will always be grateful to Dr. Wise for all she did for me! I recommend her without hesitation because I know how difficult finding someone who understands Cluster Headache can be. She is fantastic. Good luck whoever you find.
  9. I began Emgality (300mg) in September with great hope. Unfortunately, it has not seemed to help in my case. However, in retrospect, I probably have been chronic CH during this time. I have discontinued use
  10. I'm happy to hear that has worked for you so far and I hope it continues. I have gone a similar clean eating nutrition route. Also, in September 2018 I even went all-in on intermittent fasting (no eating for 12-16 hours, then I eat a normal amount of calories in remaining hours). I lost 32 pounds in 14 months. We even experimented by reintroducing some foods back into my diet short term to see if they would trigger CH. Anything to isolate the beast. Bottom line... My weight went down, my blood panel numbers (including micronutrients) improved dramatically across the board, and my energy went up. Unfortunately, I also went from episodic to chronic CH during that time. I feel better but can do less because of my debilitating CH condition. I had a seven-day stretch in early November when I had only four attacks. I thought for sure I was headed back into remission. That was followed by seven days with 35 attacks. There were no changes in nutrition, sleep or anything except some youthful optimism at the beginning of the second week. At least for me, CH is definitively not nutrition-related.
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