Hi,
I'm Imke and my husband has cluster since around 10 Years. I hope I am at the right place here. I have a question regarding Cluster because I really want to help my husband and I don't know what else to do.
My husband got diagnosed just last year after a long horrible journey. I have been with him from his first episode till now. He has been through a lot, 3-4 attacks per night over months every summer. I am stand beside him helpless as hell. Him Taking so much pain meds till he throw up and could just crawl from bed to the toilet and back. We went to different doctors and through a lot of diagnoses, he got little empathy and even less help, just things like: You have weak neck musles, you should train more and stuff like that. Last year he finally got diagnosed and now he knows what to do when an attack / cicle starts and he wants to try mushrooms but is still nervous about it.
Around this time of the year normally the cicle starts. But this time it did not yet but he has something we both now call nerve attacks. No pain. But about 2-3 Times a day (not every, but every other day) he suddenly is totally nervous and angrey and irritated. He needs to walk around (like when he has an attack, then he is so agitated and runs in cicles through the apartment) like crazy and feels every nerv in his body. That is nothing compared to the pain, but still he has to lay down after a while then and be alone and cannot do anything. I am not discribing this well I gueess. But maybe someone has experienced this too. He says it feels like an aura but the pain never comes.
He has a doctor now who is specified for cluster, but she does not really know what to do about that. And he is too anxious to try the mushrooms in this state. Also he is in a depressed state of mind, I would even say burnout (has to do with his job and our financial situation).
So I hope that maybe someone recognizes these symptoms and has any suggestions what to do.
Thanks a lot.
