Clustersue Posted April 1, 2019 Share Posted April 1, 2019 So this bout of clusters started 7 weeks ago. After 4 weeks I started getting horrible pain in my right hip, right leg and right knee(cluster pain is on my right side). I was wondering if anyone else had associated pain? Quote Link to comment Share on other sites More sharing options...
Siegfried Posted April 1, 2019 Share Posted April 1, 2019 Yes ! Right side cluster and strong pain in the right knee for a few days immediately after a cycle. I am chronic with short cycles of 1 to 3 days (6 - 8 attacks per day) with 1-2 weeks rest in between the cycles. I already wondered several time what that was and if it is related to each other. siegfried Quote Link to comment Share on other sites More sharing options...
Freud Posted April 1, 2019 Share Posted April 1, 2019 That ahhh haa moment, when you realize you’re not alone or going crazy! Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted April 1, 2019 Share Posted April 1, 2019 I have NEVER heard of this. How wild. Wonder how many other people have it? Mox Quote Link to comment Share on other sites More sharing options...
Clustersue Posted April 1, 2019 Author Share Posted April 1, 2019 My pain in my right side leg(which becomes very weak), hip and knee is a 10 (on a 1 to 10 scale) where my cluster is a 25 ( on a1 to 10 scale as we all know). I ended up in the hospital (the Ohio State University) WASTE of time. Informed me I "probably pulled a muscle". I explained to them that I was in cycle on my CH and ask if they could be related...the two attending physicians didn't know what a CH was. For such a "worldly" hospital I was completely shocked to be sent home with an ibprophin and NO help or knowledge. Still searching for answers! If I find a knowledgable doctor that has any answers I will post. Cluster busters seems to be the only place to find any answers! Thanks for always being here! Quote Link to comment Share on other sites More sharing options...
Freud Posted April 1, 2019 Share Posted April 1, 2019 There are good docs out there you’ll usually find them at headache centers. Did you check the dr list? Quote Link to comment Share on other sites More sharing options...
Clustersue Posted April 1, 2019 Author Share Posted April 1, 2019 Yes I have checked out the Dr list, I have a couple of names saved that I will be contacting. I am the type of person that likes research, so as soon as I am done with every book and cranny on these docs I'll set up appt. Thank you Freud and all of CB org. I am sure had it not been for this organization I'd be dead by now! Quote Link to comment Share on other sites More sharing options...
Chronic2017 Posted April 9, 2019 Share Posted April 9, 2019 I busted this past weekend and about an hour in got hit with an attack. Weird thing about this attack is that it felt as if the entire right side (same as my clusters) of my body was "locked up". It's the only time I've felt such intense pain in my arm (or any other part of my body) that even comes close to a cluster. There was a wood stove going where I was at and it was all I could do not to walk over and lay my arm inside of it. The time dilation effects of the busting made this 3 hour attack feel like an eternity. I've used capsaicin in my nostril on the side I get attacks and it usually does a pretty good job of ending an attack within a few minutes. It stings, I'd say maybe a 7. I used it right at the beginning of this attack and literally couldn't even feel the burning sensation from the capsaicin because the attack was so bad. I was thinking about posting another thread because I was wondering if others have ever had the "full body" attack before, but then saw this one. Glad I'm not crazy. Any ideas on why this can happen? Quote Link to comment Share on other sites More sharing options...
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