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Advocate In D.C. & Have All 50 States Join The Hoh Team!
A Mothers Story. Nov.20,2013
My son, Austin has been suffering from a very rare disorder called Cluster Headaches. As most of you know, since the age of 8, they were finally diagnosed at age 17, what a blessing that day was! Thank you Dr.Balke children's neurology in Templeton, Ca. As Austin aged, this 'deep brain disorder' has gotten so much worse. Witnessing your child suffering from the 'worst pain known to man' (Google it). There are days he will go through several oxygen tanks at 25 LPM, hyper ventilating with a special mask. It's true, he has screamed in unbearable pain that neighbors call the police. They know him from suffering at his high school, even during his graduation ceremony.
Emotionally, Physically and Mentally.
Breaks my heart. He has gone though so much, too much!
How does someone describe such pain? I'll try, from my understanding they come on as fast as a sneeze and go away that fast. Think of the hottest ice pick, stabbing your eye, turning slowly. (all his teachers are aware if he suddenly walks out, heading for his personal O2 tank). Running to the nurses office in high school, (as he would say, looking like a freak!), holding his head, facing down and hunched over, moaning, crying or eyes watering, nose watering uncontrollably. Lasting for 5 min. up to an hour or greater. Sometimes, passing out from the intense pain. The pain level scale 0-10, its described as a 12 or greater by professionals that have seen him. (Emergency rooms, fire stations, police etc...) Very few professionals, including neurologists have ever witnessed the attack. Many in the medical field don't know what (CH) Cluster Headaches are. 0.01% of the population suffer. CH's a.k.a. suicide headaches (the pain is unbearable!). There are many more ailments with this deep brain disorder. Please, it's time we get the word out, so many are suffering, also undiagnosed.
In the years past, I've missed a day, week or two here and there, but last May and June of 2013. I missed 6-8 weeks of work. I was, still am, so blessed to have family and friends help us during this difficult time. You know what the best part was? Finding this group! ClusterBusters. ClusterBusters group helped me from their past experiences and knowledge, so I could help my son. Blessing!
Austin and I flew to Chicago to a ClusterBusters Conference, Sept 2013. We met these wonderful people that suffer and their family's who helped us get through all those dark weeks. Thank you, it was life saving for Austin!!!
We all sat in one big room and listened to doctors, scientists etc... By the way, all were there because they care, on their own dime. Every single person was engaged the entire 2days. No one was paid to be there, including the speakers. Amazing the amount of support of everyone. We shared our deepest heart felt concern, tears, laughs and many hugs. I've never understood support groups, until I was at the conference.
If I still have your attention, I'm finally getting to the subject here H.O.H. Headache on the Hill (Capitol Hill in Washington DC). We have a date set for Feb 2014 to get medicine passed and funded with the FDA. This medication helps with Migraines too.
We greatly appreciate any support and leads that is available to us.
10 Natalie's goal