Its tough some days talking to the ignorant. But they are only ignorant until we educate them and then they are just heartless bastards who don't care or did not want to learn or think they have the cure.
Hey, have you ever told someone you have Cluster Headaches? And their immediate response was... Oh my mom, my aunt, my friend or I get those. Chances are they do not. Unless they are the 0.01% of the worlds population. Or you try to tell someone its the worlds most painful disease and their eyes roll like we are remotely asking/seeking empathy or the pity party? or how about you tell someone in the medical field and they say they have the cure...like Chiropractors, Herbal Doctors, and so on?
Well, you are not alone. I do not know how many thousands of times people have asked what is that or whats the decal on your car mean or you have some sort of Dr appt someone where and they do a medical questionnaire's and you explain I have Cluster Headaches...and you get the deer in headlight look. I get that look every time when I explain its the worlds most painful disease known to medical science. The name Cluster Headaches is so misleading itself. Seriously...they say its called Cluster Headaches because they come in bouts...How about us Chronic Suffers with zero remission???
I have said to people....I have Cluster Headaches...that gets the least bit respect. I have said Suicide Headaches and peoples ears perk up and eyes open and ask whats that? I have said Horton's Neuralgia and people go ohhhh yeah. O, that's not good(like they have an idea or know).
Honestly. Its not a Freaking Headache. Its a head attack. My buddy Dan from Texas in a video said that. Its perfect. Its not a headache. How can I state this??? I have chronic Migraines and Tension Headaches. I have never wanted to kill myself over a tension headache or migraine. Not to demean any fellow Migrainuers. They suck too. But no migraine or tension headache has ever caused me to punch myself in the eye repeatedly until I gave myself a black eye. No migraine or tension headache caused me to ram my head through drywall, break the headboard off my bed so many times I had to throw it out, wake up at 3am screaming so loud not only everyone in my house woke up but yet the neighbours ask if everything was ok??? No migraine or tension headache ever caused me to plan my own funeral and decide what was better for my son. A sick or dead dad.No migraine or tension headache caused me to have 4 freaking brain surgeries !!!! How about that Jack? Is that severe enough for ya? Hey stupid, take your head out of your ass and listen to me for a second would ya? I am trying to tell you YOU DO NOT KNOW WHAT THIS IS. Stop and listen. Your aspirin, won't help. Telling me to go find a dark room and lay down won't help. Its not a migraine. NOT EVEN SAME CLASS OF PAIN.
Last person I dealt with I said its as bad as being shot. He said how would you know you never been shot have you? I said not but I spoke to someone who survived a gun shot wound to the head, lived to tell that CH is far worse. Far worse than kidney stones, far worse than child birth.(yes women who have CH say this all the time who have bared a child). So shut the frig up for 10 seconds and listen. There is no cure. We have world leading neurologist, neurosurgeons, Dr's show and dedicate their life to this. You cure is not an aspirin.Not an adjustment.
As a chronic survivor of the disease for almost 9 years this July 25. I can tell you us fellow survivors are world experts. I spent YEARS researching the disease. Seen world class neurologist, had 4 brain surgeries and lived with this disease. I sincerely appreciate your input but please. Smile,nod and use your inside voice.
This blog is not written in anger or haste in anyway shape or form. Its is written because every single Cluster Head Survivor has experienced this many times over. So many times allot of us get frustrated and overwhelmed with anger.
Its sad really. You tell someone you have Cancer, MS, Parkinson's and no one says a word. Or says I'm Sorry. Tell someone you have CH and no one believes us or thinks what a whiner.
I am not expressing any anger today. What I am expressing is our need to educate EVERYONE. I have said this many times. Tell 1000 people at random you have CH and you will get 1000 misinformed answers. Because 0.01% of the world has it. That means 99.9% of the world has never heard of it. It is our job not medical professionals to tell our story. If your too afraid, show them me or another survivor on line.
Not all Cluster Heads are like me. Alot want to be quiet and silent, and that is a ok. Nothing wrong with that. And there is a few like me yelling "look at us". Our disease deserves as much recognition for our daily suffering and how our lives have been altered forever. Our disease deserves awareness, recognition for not just pain but for medicine that treats some and helps others. It deserves its own ribbon, own entity. We may have the worlds most painful disease known to medical science yet we are the last ones funded for research, and rarely get any empathy let alone understanding.
I beg all fellow survivors to educate others. Tell your story and get involved. It has nothing to do with pity or anger. I do not seek pity from anyone and I don't tell my life in anger to those who are really ignorant. I speak form the heart because maybe just maybe the next CH survivor they encounter it might be a much more pleasant experience for the survivor with some more understanding and compassion than someone who doesn't give a rats ass or thinks they know when they don't.
I have had this disease almost 9 years. Not once have I met anyone out in public who knows what CH is. (not including neuro appointments). The more we educate, the better it is for us and our families.
I give people the benefit of the doubt when I hear others complain about pain.
Awareness not pity. Lets educate...