MaxHead
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Posts posted by MaxHead
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As you’re seeing, probably an individual situation. I have had 3 cervical spine surgeries and have monthly massage (same person for 2+ years that knows me and what they are doing). I also have monthly PT with a specially trained cervical spine therapist which has increased my ROM and reduced my cervicogenic pain and migraines. Temporary relief for my rCCH. But I get an attack afterwards about 30% of the time.
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Annette,
Be prepared to try many possible solutions. What works for one person will quite possibly not work for the next. What works for you now may not work six months from now.
Topiramate appears to work (thank goodness) for Jess. My life improved significantly once I tapered off of it after 3 years and doing so had zero effect on my rCCH. Verapamil helps me some (shortens the duration) but I’ve read many say it doesn’t help them at all.
Try it all but don’t dally with meds that don’t seem to help if you aren’t sure, then they aren’t helping
At all costs try O2 as others have suggested. It has no negative effects but for a large percentage of CH cases, it is an effective abortive. The biggest issue for many people is getting access. I would consider getting a different doctor.
General neurologists typically know little - or worse, they “know a little” - about cluster. I see a neurologist at a teaching hospital (medical school). Check the closest hospitals to you and see if someone on staff has a cluster specialty. I drive (or more accurately, someone drives me) 5 hours round trip 1-2 times monthly for treatments (occipital nerve blocks, experimenting with Botox…not helpful at all so far, etc.).
Wishing you good luck with your battle. Expect it to be continuous and ever-changing. You must be curious, courageous and in control of your care.
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This is one of the best, most complete pieces on Cluster that I've seen. No surprise given who the authors are, but I thought everyone should see it if you haven't. Not tons of new information for those of us who are battling daily, but the main intent of the article is to raise awareness and education in the medical community.
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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.
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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!
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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!
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I'm in Asheville, NC
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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
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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!
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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.
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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.
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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
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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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Why don't we all just get real?
in General Board
Posted
LP3, only those of us in this hell can understand your rage and feelings of hopelessness. But DO NOT give in to those feelings. You did well to vent to your brothers and sisters on here. We all get it.
I dosed this morning at 4 am and then stood in the kitchen about an hour ago and wept as a KIP 8/9 hit me again. I was devastated. I could hear laughter and happiness in the next room as family celebrated-just as it should be. .
The beast had once again reared its ugly head on one of the holiest times of the year for our family. I hate being made the center of attention when the beast interrupts everyone’s life - not just mine. No one complains because they understand-as much as they can anyway AND because they love me
After the entire family prayed for me I was humiliated by once again being the center of attention. I was grateful for the love but once again I had been crushed by the beast. However, I somehow found the strength to get back into the fight
So I open the forums and your post is the first one I see. Surprisingly I wasn’t discouraged by it but my first thought was LP3 needs us. Of course, so many had responded that very day to you with kindness and understanding that only a fellow cluster head can have.
it dawned on me that is what keeps us all going in those dark moments: the fact that we’re not alone, that someone somewhere needs to hear that someone else understands, and that there is no way in hell we will let each other down.
thank you for your post and I hope you had a wonderful holiday weekend-despite the beast.