Posted by Jack Boyd (152.163.204.69) on August 20, 1999 at 19:38:15:
Be an idiot, be a jerk but don't be a fool.
My first bout was in 1970 at the age of 20. Like many of us I went to the Doctor and got the wrong diagnosis and no effective treatment. For the next 15 years I was episodic ( 6 to 8 weeks of clusters every year or so ). I endured without medication and took a perverse satisfaction in doing so.
1976 - thumbing through Cosmoplitan magazine ( probably looking for some cleavage photos ) I came upon a letter to the editor that talked about this thing called clusters - I nearly fell on the floor when I saw that this thing had a name, that it fit my symptoms to a tee, that it wouldn't kill you and there was effective treatment.The punch line for me in the letter was that the treatments had serious side effects ( I guess they were talking about steroids, I am not sure ). This was a
no brainer for me and I decided I could continue to endure without medicine.
Fast forward to about 1985 - I have a much more responsible job and I need to speak for before a group of about 500 people in Dallas, Texas and I am in the midst of a cluster cycle. I found the right nuero and I have been effectively treated ever since.
I will bore you no more with the details of my life with clusters other than to say It has been a lot more saisfying, gratifying, thrilling, pick your descriptor, in avoiding clusters than enduring them.
So seek treatment. When I think about all the time and energy I wasted being the great stoic when I could have been living, I realize that I am indeed a FOOL.
Clusters are monumental events and I can still see the look of horror, pity, sorrow, on the faces of my children, my parents, my coworkers, and my wife when I was in the midst of an attack.
Two images really stick in my mind:
1)On a visit to my now deceased father who was retired in upstate NY in 1975 - I started an attack and like most of us I just needed to be alone - he asked me if I was OK and was it over yet - I snapped at him because I knew I was in for at least 3 or 4 hours of pain yet and how dare he ask me if it was over yet. The hurt look on his face still bothers me today.
2) on a trip to Florida in 1995 - my Verapamil is less effective I have found if I take a plane - my daughter ( then 15 years old ) was driven to tears watching me suffer.
Sorry for rambling so much but I have wanted to say this for quite awhile.
Seek treatment - if not for yourself then for those poor folks around you.