Jeri Barry Posted September 14, 2022 Share Posted September 14, 2022 I have seen people posting about this on a cluster headache support group on Facebook. I feel this group has more experience and knowledge about clusters. Has anyone else made this connection? My docs strongly suspect I have EDS, and I have been diagnosed with mast cell activation this year. Have also had a cluster reemergence, the first since 2014, and it is brutal. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 14, 2022 Share Posted September 14, 2022 Wow, hadn't been aware of EDS, but a quick googling reveals there are various types of it, and I have the same hypermobile left elbow as this kid, plus other related symptoms. I imagine that hypermobility in just one elbow, not other joints, might not impress an EDS diagnostician so much though. From Google What are the specific symptoms of Ehlers-Danlos syndrome? People with hEDS may have: joint hypermobility. loose, unstable joints that dislocate easily. joint pain and clicking joints. extreme tiredness (fatigue) skin that bruises easily. digestive problems, such as heartburn and constipation. dizziness and an increased heart rate after standing up. 2 Quote Link to comment Share on other sites More sharing options...
Jeri Barry Posted September 15, 2022 Author Share Posted September 15, 2022 @Bejeeber, I am just learning about EDS myself. I needed 2 hip replacements in my early 40s, have hypermobile elbows, and also have an aortic aneurysm, which indicates the vascular form of EDS. I never considered that it could be connected to Clusters. It is an indication that your body does not properly synthesize collagen and, as you said, can take on many forms. I also came across this in my research regarding the connection between cluster and mast cell activation. https://journals.sagepub.com/doi/abs/10.1046/j.1468-2982.1990.1005221.x?fbclid=IwAR3ohiL8nyoetehD3hUBeXm42XcpvOsS2VHhODpxDHeOK3jjJC8VVqwpkQM Quote Link to comment Share on other sites More sharing options...
Jeri Barry Posted September 15, 2022 Author Share Posted September 15, 2022 @Bejeeber, I also came across this study which revealed a genetic marker for cluster headaches. I had no idea this had been identified. While it doesn't help us abort or control our condition today, perhaps it will lead to more research that will help in the future? https://onlinelibrary.wiley.com/doi/10.1002/ana.26150?af=R Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 15, 2022 Share Posted September 15, 2022 Wow² regarding mast cells. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 15, 2022 Share Posted September 15, 2022 Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking. 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 15, 2022 Share Posted September 15, 2022 10 hours ago, Bejeeber said: joint hypermobility. loose, unstable joints that dislocate easily. joint pain and clicking joints. extreme tiredness (fatigue) skin that bruises easily. digestive problems, such as heartburn and constipation. dizziness and an increased heart rate after standing up. Seriously trying not to overthink this..check 5 of the 7. But then again I could just be getting old minus the hyper flexability and constipation... Quote Link to comment Share on other sites More sharing options...
Jeri Barry Posted September 15, 2022 Author Share Posted September 15, 2022 @BoscoPiko, I hear you! Aging is not for the faint of heart! 2 Quote Link to comment Share on other sites More sharing options...
Jeri Barry Posted September 15, 2022 Author Share Posted September 15, 2022 32 minutes ago, CHfather said: Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking. @CHfather, thanks for the link and reference to what Batch has written about mast cells. I am just "wowed" by the amount of great information and help available with this group. I appreciate the time and effort you all put into sharing your knowledge and experiences. It makes this condition much less lonely and isolating. What a fantastic group of people! 3 Quote Link to comment Share on other sites More sharing options...
shadowcatsam Posted September 25, 2022 Share Posted September 25, 2022 This lady has both https://jezebel.com/woman-with-severe-chronic-pain-was-denied-medication-fo-1849569187 Quote Link to comment Share on other sites More sharing options...
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