Oww Posted November 22 Share Posted November 22 Does anyone here have a solution for helping strangers understand, and that I'll be OK in an hour? I'm not able to respond in any meaningful way during the peak of an attack, but I can still pace until too tired. I've noticed holding my head in my hand (I often do this in reaction to the pain) helps some, but kind people still want to help or call 911. I've thought about a note that I could just hand them, but unfortunately I have heart disease and don't want to tell everyone to just ignore me completely and me end up with another heart attack -- obvious but my blood pressure and heart rate goes way up and stays up for a while after a cluster. (Some nurses observed me with a CH (Cluster Headache) and were concerned that I was having another heart attack and called for an ambulance.) I could probably describe the difference well enough for someone to determine if it was heart or cluster, but a coworker wasn't sure if everyone would read a note anyway. Aside from getting an ambulance for me, many want to offer me a private dark room to sit or lay down in. Kind, but being confined with a cluster is miserable. (I've been in a hospital for other health and got a CH. It came quick enough that I couldn't tell the nurse what was happening, but got a nice dose of Dilaudid through my IV.) Quote Link to comment Share on other sites More sharing options...
FunTimes Posted November 22 Share Posted November 22 I would thing a business card type note or description as to what you ware going through and how others can best help would work best. Others here on the site have talked about this type thing in the past. I thought about putting a sign in my car for when I am huffing oxygen to keep the concerned citizen from knocking on the windows trying to help. You can not blame people and feel thankful that strangers that are willing to help others still exist in this world. Quote Link to comment Share on other sites More sharing options...
Oww Posted November 22 Author Share Posted November 22 Thanks for the response. Yes, I'm thankful for strangers wanting to help. I just can't respond to them well in the moment. Most of the emergency medical care in my area is volunteer. So, if they get called out to help me, they've dropped everything - including their job - to come help me, for nothing. I don't want to make so much unnecessary work for them. And admittedly, the interaction with them is difficult to deal with. I'm not to good at searching the forums - I wasn't able to find those other posts you'd referenced. Quote Link to comment Share on other sites More sharing options...
Inno Posted November 22 Share Posted November 22 On 11/5/2024 at 11:56 AM, Inno said: I have already seen this concept somewhere on a website. I don't know if I would use this. https://clusterheadachewarriors.org/shop/printed-materials/cluster-alert-card/ Here you go 1 1 Quote Link to comment Share on other sites More sharing options...
McDoogals Posted November 26 Share Posted November 26 Idk why but I imagine myself having an attack in public desperately hitting a vape while smacking my head and rocking to the horror on everyone's face around me. Then I give them that card haha Quote Link to comment Share on other sites More sharing options...
Inno Posted November 28 Share Posted November 28 I've never even had a full blown CH in public, so I don't know what would happen. When we're going somewhere an someone else drives, I have the tendency to be in a hurry and forget to bring my stuff. This is actually the scenario I am always worrying about the rest of the evening after I realise I have nothing with me Quote Link to comment Share on other sites More sharing options...
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