Add Cluster headaches to the SSDI list
Add Cluster headaches to the SSDI list
Why this petition matters
I am one of the hundreds of thousands of people who live with cluster headaches. For those of you who don't know what this condition is it is a severe headache disorder that effects around one in one thousand people. The attacks come on very suddenly and very painfully usually starting with aching (also known as shadowing) behind one eye then it spreads throughout the orbital bone then throughout the effected side of the head with intensifying pain that almost feels like your brain and face are on fire. During an attack the sufferer will experience unbearable pain, irritability, extreme stress and often times suicidal tendencies or thoughts (hence the nickname "suicide headaches"). Some women who have cluster attacks have compared it to child birth with some saying that they'd "rather go through child birth twenty times over than to suffer cluster headache attacks". Cluster headache is more common in men ages 19 to 40 but can also effect women and in extremely rare cases even children. During my attacks I experience all of the pain described above as well as severe pain in my back teeth on the effected side. There have been times I thought my teeth were going to explode out of my mouth but even that pales in comparison to the headache itself. Not alot is known about Cluster headaches as it is kind of a rare condition and therefore has not had alot of funding thrown at the issue for research. What we do know about it is that it starts in the hypothalamus part of the brain which is also known as the body's biological clock and that the pain is rated at twenty times more intense than a migraine. There are two types of cluster headache sufferers which are episodic and chronic sufferers. For those of us who are episodic we have annual cycles where our attacks are active over a certain season or series of months. I myself get my cluster cycle starting around the middle or end of spring then I get them daily up to 5 times a day until around the beginning of fall. I then get a couple of months of remission but when spring comes back around it's rinse, cycle, repeat. Chronic suffers get their attacks year round with zero remission. A cluster attack can last anywhere from 15 minutes to 3 hours and anywhere in between so when you factor that into having 5 (sometimes 8) attacks a day you can get a good idea of what an average day for a cluster headache sufferer looks like. Unfortunately there is no cure at this time so all we can do is prepare for the attacks, try to prevent them from coming on as much as possible, try to make the pain as tolerable as possible, etc. But when our attacks happen they are demobilizing and incapacitating and many of us have lost jobs and have been left in positions where we were unable to provide for our families due to these attacks. The word "headache" being associated with the condition is highly misleading and often times leads to our bosses, coworkers, friends, etc not taking our condition seriously and not thinking it's as bad as it really is. My attacks intensified worse than they had ever gotten a couple of summers ago and I ended up losing my job which was not only paying me great money but they were also paying for me to get my HVAC certification. In other words this condition ruined my opportunity to have my trade paid for and for me to launch a promising career in the HVAC field. That summer I started getting attacks every hour on the hour to the point that I had to sit down and bury my face in my arms to avoid light getting in my eyes and my work orders started piling up because I could get nothing done. I started getting sent home because my attacks were too bad and soon enough I got fired. Before that cycle happened I had just passed my one year mark, had never missed a day and my bosses and colleagues were impressed at my work ethic and just like that this condition reared its ugly face back into my life and tore down everything I had worked for. I know so many people who have similar stories due to this life ruining condition. I got lucky after that cycle ended and I went into an almost 3 year remission but once again they came back a little over a month or so ago and they are already starting to effect the job I have now... I'm aware that there are worse conditions out there and I hope they all get the attention they deserve but I also hope that cluster headaches will be taken more seriously and with your help and your signature hopefully we can get this condition added to the SSDI list. Once this reaches enough signatures I want to send it to the social security administration and any other organizations that may be able to help those of us who suffer from this condition. If Cluster headache disorder gets added to the SSDI list we can assure that the sufferers of this condition and there families have an income when these attacks cause us to lose jobs and render us unable to get out and provide the way we would like to. Even if episodic sufferers could get the help only during their cycle and we could work the other months of the year when we are in remission that would be a blessing but I truly believe that chronic sufferers deserve full time SSDI. I hope you support this cause and thanks for taking your time to read about it.
(Painting used is a piece called "the pain of Cluster headache" by Agnes-Cecile)