Jump to content

Connection between cluster, mast cell activation and Ehlers Danlos Syndrome?


Jeri Barry
 Share

Recommended Posts

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. 

Link to comment
Share on other sites

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.

 

image.png.c90553dc09e850b837827833bec294b0.png

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.
  • Like 2
Link to comment
Share on other sites

@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

image.thumb.png.c57d8e520a6143f6b6a0de2bba11ed27.png

Link to comment
Share on other sites

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.

  • Like 3
Link to comment
Share on other sites

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...

Link to comment
Share on other sites

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!

  • Like 3
Link to comment
Share on other sites

  • 2 weeks later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...