My parent’s named me Tom Termeer.
Unfortunately, I am known globally as the “Cluster Head Tom.”
To those of you who do not know what that means, I live with a disease called Cluster Headaches. Researchers from Johns Hopkins Headaches Center have deemed them the most painful disease known to medical science.
It is an extremely rare disease. This disease affects one person in a thousand. Commonly known as suicide headaches, because the suicide rate among sufferers is twice the rate as non-sufferers. To date, very little research has been done on the disease. The U.S. has spent less than two million dollars on Cluster Headache research in the past 25 years.
To give you a better visual of those numbers, 1.78 Billion has been spent on Multiple Sclerosis in the last decade. Sufferers typically have as many as 15 cluster headaches per day that last from 30 minutes up to 3 hours. My personal experience is this; I have endured more than 10,000 attacks in the past 9 years. On average headaches last approximately 1.5 hours. I have had four brain surgeries. None of them achieved desired results i.e. living pain free.
Following the surgeries I was diagnosed with Post Traumatic Stress Disorder (PTSD). I always thought that was something only soldiers could have. Turns out that isn’t true. After my last brain surgery I decided to end my life. While in MiamiI jumped in front of a bus. Unbelievably, the bus swerved at the last second and avoiding me. It was at that point that I made my decision to live, no matter what the cost.
Suicide is a permanent decision to a temporary problem. It ends all chances of ever experiencing happiness.
I’ve had the displeasure of reading too many suicide notes in my life. So many of them said the same thing; ”No One Believes Me.”
If a friend or loved one approaches you with the disease, please listen to them. Take them very seriously. It is not sympathy they seek. We, as sufferers, seek empathy, compassion and understanding.
Unfortunately, there is no cure for Cluster Headaches.
Although there have been no approved medicines for this disease, different forms of LSD have been known to help sufferers on a temporary basis. I have never been someone who partakes in the drug culture. Not even alcohol. However, “Magic Mushrooms” relieve some of the pain that I experience.
In order to raise awareness I have created a blog and put together fundraisers throughout the years. It is my goal to help others like me who suffer.
I also do it in memory of those who have chosen to escape the pain by ending their life.
The ones who continue to fight need love, support and encouragement each day. I always encourage those who suffer to live life to the fullest in the time between attacks.
If you are a spiritual person, have strong faith. If you have family, hold them tight.
In my opinion, pain is just fear leaving the body.
The three sources of my strength are my wife and son and my faith. LIVE and LOVE LIFE!
If you feel moved by what you have read, please take the time to write to your Congressmen/Women and ask that more funding go towards this horrible, debilitating disease.
Tom was recently nominated for an award for his efforts in raising awareness for Cluster Headaches. You can vote for him here.
You can also read more about Tom and the disease by visiting his blog.