About Me
Subscribe To
Posts
All Comments
Favorite Pasttime
One can't describe the feeling of catching a wild West Virginia Trout with a rod you built and a fly you tied.
My Favorite Blogs
Saturday, June 13, 2009
An anniversary of sorts....
5:04 AM | Posted by
David |
Today is June the 13, and a day I probably will never forget. What does this day have to do with my blog and memories from another day? Because the events of last June and every June for 6 years before that has a lot to do with who I am. There may be some who will read this who will understand what I will try to explain. There may also be those that won't believe it or actually scarf at it.
On February the 14, 2002, I was awakened in the middle of the night with what I thought was a sinus headache. Little did I know the pain that rousted me from a deep sleep would be a villain in my life for the next 6 years. I had only been asleep a couple of hours when it happened. The headache lasted about three hours and went away as fast as it came. I knew I was having some sinus problems as I usually do that time of the year and really didn't give any thought to it.
I had just started my 7 day long break and was off from work. I went about my day preparing for a coming snow storm they were predicting and really didn't feel bad at all. Then that night within 30 minutes of the time the first one hit...another one. Only this time it was twice as bad. Bad enough it scared me. I experienced things I have never known before. While outside the storm raged. This time it lasted for four hours and absolutely wiped me out. When daylight came and the headache subsided, we also had 14 inches of snow. Roads were closed, businesses shut down and I was snowed in, even with a four wheel drive.
I began to experience what is known as the "hang over" or aftermath during the day. My neck and face were so sore I couldn't stand to touch it. But the confusion of what was going on was just as bad. That night again within an hour and half after I was asleep it hit. This time...I felt sure I was going to die. I had never in my life experienced such pain. My left eye was swollen shut...along with the left side of my nose. I experienced a feeling of heat that I still cannot describe. It was then I realized I was doing things I had no control over. I paced and walked...cussed, cried, and screamed. I felt that in the wee hours of that winter morning my life would end. I knew that only something really bad could cause such pain.
When it became daylight, I decided I had to do something regardless of the streets. I finally made it out and went to emergency medical. They told me I had a serious sinus infection and gave me some meds to take. They told me, as always, to go see my personal physician as soon as I could. That night, just as with the others, it hit. My teeth were so numb you could pull them without Novocaine. I paced, rocked and held my head in my hands like a vice trying to force the pain out. I cussed and screamed which is something totally out of my nature. Without realizing what I was doing, I went outside in the cold and packed my face in snow. I don't know why. I know I did. Finally it was over just as fast as it came.
This was the pattern for the next 18 days. I went to my personal physician and he, in turn, sent me to a neurologist and a headache specialist. After thorough exams of MRI Scans, and everything else you can think of, he told me I was suffering from what is known as Episodic Cluster Headaches. He told me the medical history of them. That they were very rare and there was no known cure. There was a regimen of meds I could take to ease them somewhat. But that was it. He instructed me on giving myself a pain shot when they hit and set me up an appointment with a specialist that deals with them in Charlottesville, Virgina.
The headaches ended by the end of March and I felt it was over with. I began to research them and the more I found, the more concerned I became. They had all sorts of nicknames from "The Devils Dance" to "The Smith and Wesson Headaches". Some actually called them "The Suicide Headaches". I found that an unexplained nature of them was the uncanny time line they followed. The end of April mine were back and far worse than the first series. At times, my temples were void of hair where I had pulled it out, and I'd go to work looking like I had been in a bar fight from the black and blue bruises where I had unknowingly hit myself or squeezed my head so hard trying to force the pain out. This set lasted 9 days. So became my life every three months to the extent you could mark your calendar by them. Each came after I was asleep for about 2 hours. Each lasted from 2 to 5 hours.
A doctor from the Cleveland Clinic created a pain scale for the clusters during a group study of them. A number 5 is like the worse migraine you can have. Number 13 was suicidal. After my visit to Virginia, I was taught how to judge the pain and instructed to keep a journal of them. My employer was sent a letter explaining how rare and how intense the pain was and the type of meds I was on that might show up in my yearly physicals. I became afraid to go anywhere. I was afraid to travel and carried even more fear my children might see me have one. I was held hostage by them.
This was my life for 6 years. In that time frame I had over 250 of them. I have cried till my eyes were bloodshot and screamed to the point I lost my voice. I begged God and I cussed him. Never in control of what I was saying or actually knowing. I have thrown things and knocked holes in the wall not knowing till they were over that I had done so. One physician who did a study on the Clusters wrote that it's some of the worse pain one can experience. She described it as amputation with out anesthetics. She went on to explain that out of the thousand cases she studied, that the word "cluster" was a key to recognizing them. She went on to say they were not even in the same category as migraines and you don't have just one. So many know or feel they know of someone who has them..or had them. But in reality it was not the true "clusters". It's something you don't want to see another have...nor will you ever forget the pain.
For 6 years I knew that at least 4 times a year, an hour and half to two hours after I was asleep they would hit. It was like knowing that each time you fell asleep the same terrible nightmare was going to happen. I had every test you can imagine. Sleep test after sleep test. I tried meds that one sufferer would suggest and nothing showed a trigger...or relief.
Then the first of June 2008 they hit. Only this time they hit during the day and some days I had as many as 5 or 6 of them. By the end of the first week of June I was beside myself. I was desperate. Dangerously so. I contacted the specialist in Virginia and they conferred with my personal physician and suggested a morphine patch. I won't go into details, but, fear, pain and a hopeless feeling went beyond danger for me. I knew I could not continue to suffer 10 to 13 level Clusters much longer. I ran into a problem with getting pain meds from my insurance company. My personal physician tried to help but was running into a block wall and I was running out of time. I simply could not stand it much longer.
I contacted my son for help and he asked me if I would consider trying something somewhat new. He called and got me in with a Neurologist the specializes in chronic, severe pain. When I went to see him the first time and explained what I was going through he showed me more compassion than any physician I had seen. Trust me. I had been to a bunch of them. He told me something I'll never forget...he said, "I'm 90 percent sure I can stop 90 percent of the pain". "I just can't tell you how long it will last". He told me it could last a week, a month, a year or 5 years. I told him if he could give one week of sleep it was worth it.
The procedure consisted of long needles placed at three nerve points in the base of the skull. Then one in the jaw on the side the headaches were at and one in the temple. I'm not going to lie. I walked back to my son in the waiting area with tears running down my face. The procedure hurt and hurt bad. After each procedure I'd sleep at times for 12 to 20 hours. I had a total of 4 of these. Finally after the fourth one, the headaches stopped. That has been one year ago today. One year I have been pain free. I still wake at nights with the symptoms of them. But no pain. For the first time in 6 years I'm no longer afraid to travel or be around others certain times of the year. For the first time in 6 years, I don't have to worry about stocking up on pain meds and stat pens. For the first time in 6 years, I don't have the fear of being at work or in a grocery store or at dinner and the "devil coming to dance". I finally have my life back.
For those that want more information on these devils and those that suffer them you can check out The Organization for Understanding Cluster Headaches..."OUCH".
On February the 14, 2002, I was awakened in the middle of the night with what I thought was a sinus headache. Little did I know the pain that rousted me from a deep sleep would be a villain in my life for the next 6 years. I had only been asleep a couple of hours when it happened. The headache lasted about three hours and went away as fast as it came. I knew I was having some sinus problems as I usually do that time of the year and really didn't give any thought to it.
I had just started my 7 day long break and was off from work. I went about my day preparing for a coming snow storm they were predicting and really didn't feel bad at all. Then that night within 30 minutes of the time the first one hit...another one. Only this time it was twice as bad. Bad enough it scared me. I experienced things I have never known before. While outside the storm raged. This time it lasted for four hours and absolutely wiped me out. When daylight came and the headache subsided, we also had 14 inches of snow. Roads were closed, businesses shut down and I was snowed in, even with a four wheel drive.
I began to experience what is known as the "hang over" or aftermath during the day. My neck and face were so sore I couldn't stand to touch it. But the confusion of what was going on was just as bad. That night again within an hour and half after I was asleep it hit. This time...I felt sure I was going to die. I had never in my life experienced such pain. My left eye was swollen shut...along with the left side of my nose. I experienced a feeling of heat that I still cannot describe. It was then I realized I was doing things I had no control over. I paced and walked...cussed, cried, and screamed. I felt that in the wee hours of that winter morning my life would end. I knew that only something really bad could cause such pain.
When it became daylight, I decided I had to do something regardless of the streets. I finally made it out and went to emergency medical. They told me I had a serious sinus infection and gave me some meds to take. They told me, as always, to go see my personal physician as soon as I could. That night, just as with the others, it hit. My teeth were so numb you could pull them without Novocaine. I paced, rocked and held my head in my hands like a vice trying to force the pain out. I cussed and screamed which is something totally out of my nature. Without realizing what I was doing, I went outside in the cold and packed my face in snow. I don't know why. I know I did. Finally it was over just as fast as it came.
This was the pattern for the next 18 days. I went to my personal physician and he, in turn, sent me to a neurologist and a headache specialist. After thorough exams of MRI Scans, and everything else you can think of, he told me I was suffering from what is known as Episodic Cluster Headaches. He told me the medical history of them. That they were very rare and there was no known cure. There was a regimen of meds I could take to ease them somewhat. But that was it. He instructed me on giving myself a pain shot when they hit and set me up an appointment with a specialist that deals with them in Charlottesville, Virgina.
The headaches ended by the end of March and I felt it was over with. I began to research them and the more I found, the more concerned I became. They had all sorts of nicknames from "The Devils Dance" to "The Smith and Wesson Headaches". Some actually called them "The Suicide Headaches". I found that an unexplained nature of them was the uncanny time line they followed. The end of April mine were back and far worse than the first series. At times, my temples were void of hair where I had pulled it out, and I'd go to work looking like I had been in a bar fight from the black and blue bruises where I had unknowingly hit myself or squeezed my head so hard trying to force the pain out. This set lasted 9 days. So became my life every three months to the extent you could mark your calendar by them. Each came after I was asleep for about 2 hours. Each lasted from 2 to 5 hours.
A doctor from the Cleveland Clinic created a pain scale for the clusters during a group study of them. A number 5 is like the worse migraine you can have. Number 13 was suicidal. After my visit to Virginia, I was taught how to judge the pain and instructed to keep a journal of them. My employer was sent a letter explaining how rare and how intense the pain was and the type of meds I was on that might show up in my yearly physicals. I became afraid to go anywhere. I was afraid to travel and carried even more fear my children might see me have one. I was held hostage by them.
This was my life for 6 years. In that time frame I had over 250 of them. I have cried till my eyes were bloodshot and screamed to the point I lost my voice. I begged God and I cussed him. Never in control of what I was saying or actually knowing. I have thrown things and knocked holes in the wall not knowing till they were over that I had done so. One physician who did a study on the Clusters wrote that it's some of the worse pain one can experience. She described it as amputation with out anesthetics. She went on to explain that out of the thousand cases she studied, that the word "cluster" was a key to recognizing them. She went on to say they were not even in the same category as migraines and you don't have just one. So many know or feel they know of someone who has them..or had them. But in reality it was not the true "clusters". It's something you don't want to see another have...nor will you ever forget the pain.
For 6 years I knew that at least 4 times a year, an hour and half to two hours after I was asleep they would hit. It was like knowing that each time you fell asleep the same terrible nightmare was going to happen. I had every test you can imagine. Sleep test after sleep test. I tried meds that one sufferer would suggest and nothing showed a trigger...or relief.
Then the first of June 2008 they hit. Only this time they hit during the day and some days I had as many as 5 or 6 of them. By the end of the first week of June I was beside myself. I was desperate. Dangerously so. I contacted the specialist in Virginia and they conferred with my personal physician and suggested a morphine patch. I won't go into details, but, fear, pain and a hopeless feeling went beyond danger for me. I knew I could not continue to suffer 10 to 13 level Clusters much longer. I ran into a problem with getting pain meds from my insurance company. My personal physician tried to help but was running into a block wall and I was running out of time. I simply could not stand it much longer.
I contacted my son for help and he asked me if I would consider trying something somewhat new. He called and got me in with a Neurologist the specializes in chronic, severe pain. When I went to see him the first time and explained what I was going through he showed me more compassion than any physician I had seen. Trust me. I had been to a bunch of them. He told me something I'll never forget...he said, "I'm 90 percent sure I can stop 90 percent of the pain". "I just can't tell you how long it will last". He told me it could last a week, a month, a year or 5 years. I told him if he could give one week of sleep it was worth it.
The procedure consisted of long needles placed at three nerve points in the base of the skull. Then one in the jaw on the side the headaches were at and one in the temple. I'm not going to lie. I walked back to my son in the waiting area with tears running down my face. The procedure hurt and hurt bad. After each procedure I'd sleep at times for 12 to 20 hours. I had a total of 4 of these. Finally after the fourth one, the headaches stopped. That has been one year ago today. One year I have been pain free. I still wake at nights with the symptoms of them. But no pain. For the first time in 6 years I'm no longer afraid to travel or be around others certain times of the year. For the first time in 6 years, I don't have to worry about stocking up on pain meds and stat pens. For the first time in 6 years, I don't have the fear of being at work or in a grocery store or at dinner and the "devil coming to dance". I finally have my life back.
For those that want more information on these devils and those that suffer them you can check out The Organization for Understanding Cluster Headaches..."OUCH".
Subscribe to:
Posts (Atom)
