Dana129 38 Report post Posted September 11 (edited) I’m very active on the clusterheads subreddit, that place is what lead me to clusterbusters, something I saw really got on my nerves, someone posted a video of a video of a cluster headache attack...and it pretty much triggered the worst anxiety I have felt in a while, the fear of knowing that more then likely I’m going to go through that again at some point, when I was new to cluster headaches, I made a very common mistake and watched videos on YouTube of people having cluster headaches, I wish I never did that, it only made the process of finding out I had clusters more traumatic, the fear and anxiety I felt when watching those videos, particularly that one with that woman who was screaming and having her partner slap her forehead was too much to bare and it made the experience much worse. Although I haven’t yet experienced the heights to level of CH pain, I still live in fear that I’ll one day reach that point...I was quite angry that the person had posted the video, for me, a video of a cluster headache is like a gorey video to people who hate blood and gore, I hate watching them, it’s scary, that’s why I stopped researching on YouTube altogether. I personally don’t think people with clusters, particularly people who are new should watch videos of attacks, there is little to be gained that can’t be gained anywhere else in terms of knowledge, the people that should watch those vids are people who don’t have clusters, to raise awareness and she’d light on what we go through, so I felt like my safe haven had been somewhat breached when someone had posted a video of an attack, nothing wrong with sharing such videos, in fact I admire it, it’s very brave to share that with people online, but subreddits and forums for people trying to seek help and people who are more then likely at the heights of their depression and anxiety due to agonising pain should not be exposed to videos like that, it just isn’t the appropriate forum to post attack videos...anyway that’s my vent, I’m mindful that this may not be a popular opinion, I just felt the need to get that out of my system Edited September 11 by Dana129 1 kat_92 reacted to this Share this post Link to post Share on other sites
kat_92 10 Report post Posted September 11 Hopefully by catching it early, starting to be religious about taking the d3 regimen, other preventatives and oxygen you never reach that point 1 Dana129 reacted to this Share this post Link to post Share on other sites
Brain on fire 400 Report post Posted September 11 (edited) @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them. Edited September 11 by Brain on fire Addition 4 Freud, spiny, Rod H and 1 other reacted to this Share this post Link to post Share on other sites
LKD06 2 Report post Posted September 21 I understand where you are coming from. I'm in a cycle RN and I was watching someone go through an attack and it honestly makes me beyond angry. Not at them for posting it or myself for watching it, but for the fact that anyone has to go through it at all. Share this post Link to post Share on other sites
Dana129 38 Report post Posted September 22 I can relate to that too, for a long time I was filled with so much anger and disgust at the fact that I and many other people have to go through this...even more so, what is so infuriating is that millions of people have this disease, and yet fuck all is contributed to its research, yes, it’s rare, but not rare like progeria, there are many other conditions with the same level of rarity and receiving significantly higher contributions to research Share this post Link to post Share on other sites
Ricardo 93 Report post Posted September 27 My unpopular opinion is that videos like that are helpful for the general population to see and understand what we go through but I don't understand how it's going to help another clusterhead. We all know all too well what a cluster headache is like. I completely understand your feelings on this. -Ricardo Share this post Link to post Share on other sites
