- Posted January 19, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
When Cluster Headaches Attack
I don't know how many times over the years I have heard, "Oh, you got a headache. That's all?"
Or been told, "Get over it!"
Or even heard, "It's all in your head!"
And yes, it is all in my head. And yes, it is a headache.
But it is not a normal headache.
My own father for years didn't think I was sick. To him it was just a headache. Take a couple of asprins, pull yourself up and just get on with it.
It wasn't until I was in an emergency room a few years back, a doctor was able to finally explain to him the extent of my "headaches". The doctor was able to inform my father how debilitating the condition from which I suffer can be.
Few people know about or undestand what chronic cluster headaches are. People know about migraines, but not clusters.
In recent years the term is popping up more that it once was, but most people use the term for migraines and tension headaches, thus inappropriately. Few realize that clusters are much more intense and threatening than a migraine or tension headache.
Clusters can and are often mistakenly diagnosed initially for migraines, since the two types of headaches share some of the same symptoms. There are other problems that go along with clusters not common to other headache types.
This is the condition I have lived with for almost 20 years now.
Most people have no clue I am suffering, in pain or sick. To the world I look perfectly healthy. I do my best to ignore and go on with life. There are days, however, in spite of my best efforts, I can't hide it.
Often I hide in Mark's Den and dare not go past my doorway. I have huddled in a corner sobbing afraid of anything that moves. Not because I wanted to, but because the cluster headaches leave me in a state of panic from which it is difficult to recover.
The effects vary widely causing various problems.
Statistically, cluster headaches affect 0.1% or less of the population. Of that small number approximately 97% have episodic clusters and may be pain free for weeks, months, even years. The remaining 3%, of which I am a part, have the chronic variety that never or seldom allows relief.
My own personal case is even more abnormal.
While generally clusters are restricted to one side of the head and behind one eye, in my case I can have attacks all over my brain. As with most cluster cases, however, the most common area affected is behind my right, weaker eye.
Unlike the majority, I have not found relief in the various treatments currently prescribed. I have learned over the years to ignore, deal and do my best to function. When all else fails, I have to be taken to the emergency room for an injection of Toradol (http://www.drugs.com/toradol.html), which does not treat, but rather knocks me out until the pain subsides enough for me to deal.
Statistics reflect, in one report, less than 30,000 people, mostly men, have chronic clusters in the United States of America. According to that report from the National Headache Foundation, 970,000 people in the US suffer from episodic clusters. (http://www.health-exchange.net/pdfdb/headfactEng.pdf)
A US study released in 2008 (almost all other studies have been in Europe), however, indicates a little more than 500,000 suffer in the US, not 1 million. Using that figure the number of chronic sufferers, such as myself, would be 15,000 in the US. (http://www.ouch-us.org/chgeneral/Cluster_Headache_in_USA.pdf)
I have tried and exhausted the current prescribed treatments with no relief. Those treatments can be read about here: http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706.
Like about 25% of cluster sufferers, I also suffer from major depression. What makes my cluster-related depression different than most depression afflicted people is that mine is not treatable with medication. Due to the activity of the cluster headaches convulsing inside my cranium and squeezing, each test I take indicates a different chemical imbalance.
During the early years, the doctors were changing my depression medicine almost monthly, sometimes more often. Lab results kept revealing differing and opposing results. With doctor approval, I finally gave up being a guinea pig. I have learned to deal as best I can with the condition.
My particular brand of clusters has other peculiarities as well. At times, my blood pressure can drop dramatically. There have been times when I have been hooked up to monitors when this has occurred. Once, in a matter of a moment, my blood pressure dropped from 120/80 to 60/30. The electrocardiograph attached, however, indicated no change in heart activity.
I have lived through partial paralysis without origin or explanation, lasting for minutes to weeks at a time. The doctors have conducted EEGs, Cat-Scans, MRIs to determine if I have had a stroke. All tests come back negative. There has been no definitive proof of any transient ischemic attacks or a major stroke. The right side of my mouth, however, does droop. Sometimes my right eyelid will droop as well.
The doctors over the years attribute it all to my cluster headaches.
Needless to say, my life quality and ability to function in the real world has been greatly impacted.
You may read more about this rare, but debilitating condition in an article I penned a couple of years ago, located at: https://marksden.com/blog/blog2.php/get-over-it-it-s.
From the Cornfield, this is the main condition I deal with on a daily basis. Some days are good, but most are racked with pain.