Gemma nanning Posted September 25, 2021 Share Posted September 25, 2021 Hi, anyone out there who is diagnostic with clusterheadache and gets attacs( like a stroke, not able to speak or move) ? Getting so lonely since 10 years. Please say to me i am not making this up....i know whAt i feel. And i tried so much medicines. Hope to have her some help with medication, or some one who recognize this. Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 25, 2021 Share Posted September 25, 2021 Hi Gemma, I have cluster as well and yes, it's no bueno. I have never had one in the way you described. I suppose it could be quite possible to feel as if you can't move (maybe pain sensory over load)? I've only been dealing with cluster for a few years so I do not know as much about medicine as others on here but I have received some really good advise from asking.. I do know all about the lonely feeling that can accompany a cycle. As long as you have found this site (and you have) you are not alone. You can do searches in the forums and just poke around, lots of great info on here! Try and keep your chin up! Quote Link to comment Share on other sites More sharing options...
spiny Posted September 25, 2021 Share Posted September 25, 2021 Hi there Gemma and welcome! The symptom you are describing is not one that I recognize as a CH thing. I have heard of and seen the paralysis that you seem to be describing though. I had a boyfriend many decades ago that would get that and it was really scary. I had cluster and he had that. He would not be able to move for 15 minutes? Have you had an MRI done yet? You might want to get one if not. We do recommend that all CHer's have one to rule out other stuff. And some have found 'other stuff' too. What are you taking now for your CH? Are you on any medication currently? Perhaps if we back up a bit, it might help. Can you give us some info on your treatments to date? 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 25, 2021 Share Posted September 25, 2021 Hi Gemma.. welcome.. ....that is beyond CH scary and not one i've heard of in clusterville...do you have a neuro? what is your diagnosis? i'm liking Spiny's question on meds...are you taking any of the anti-epileptics /anti seizures (gabapentin, topiramate, sodium valproate...) or such? maybe a side effect?. sorry, i'm grasping, this is a puzzler... Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 26, 2021 Share Posted September 26, 2021 So a quick search on the term you used for your type of attack is more of a symptom of a type of terrible migraine (wouldent wish it on anyone)! Partial paralization on one side of the body or the other accompanied by pins and lovely needles.. ouch!!!! Again I'm not of much help but holy hell don't want you to think you are alone that's for sure! You can message me any time you like. I'm pretty good about checking in on here of late. (I kinda like it here). 1 Quote Link to comment Share on other sites More sharing options...
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