Doc's Cluster Headache Journal

Tuesday, August 14, 2007

Doc's Health Talking Points

I always feel like I forget to communicate things about my health when I see a doctor so I wrote this up tonight so I could hand it to my new neurologist when I see them tomorrow...

I have had severe headaches since I was in my late 20s

When the first really bad one hit me I went to the emergency room at Baylor hospital near where I lived. It was so intense that I could not imagine that I would survive it. I honestly thought my life was in jeopardy. They did a CAT scan and found nothing life threatening.

It was maybe 2-3 years later that after several weeks of increasingly bad attacks late at night, I went to the ER at Parkland hospital and that was the first time someone mentioned to me that they thought I might have Cluster Headaches

For many years the cluster attacks would usually come at night and and rarely I would get a second attack in the afternoon so it was somewhat manageable... I could get some rest before and after the attacks and this allowed me to keep working. If I would get one in the afternoon I would go hide in my car or in a stairwell through the worst of it.

Over the last few years the clusters have seemed to change... less frequent are the super painful but mercifully short 1-1.5 hour attacks, in recent years I get longer attacks that are in the same place and "feel" the same but are more mild and seem to last longer and longer. So instead of getting a 4-6 weeks of rank 8-10 attacks every night at 3 am I now get something that feels like a cluster that starts in the afternoon and lasts till morning.... at worst they seem to overlap and I will have something that feels like a cluster that fluctuates between rank 1 and 4 that can last for days with no noticeable break.

I still get cycles that include the really painful short nighttime attacks... but often these are proceeded by many weeks of the more mild variety. I describe it like the headaches are a spring made of pain... when the spring is fully compressed the headache is short, when its less compressed the headache lasts longer and is less intense.

I am also now getting what I think are migraine headaches... the pain is completely different in feel and these happen on the opposite side of my head. I have even had what I perceive as two distinct headaches at the same time. Clusters and the newer headaches that I am calling migraines have utterly different symptoms... for example I pace and pound myself in the head with my hand or a heavy object when feeling a cluster... the other headaches make me dizzy and it is very uncomfortable to pace or pound my head.

I recently had a migraine that lasted for over 14 days with no break... actually I still consider that headache to be going on... It has just been getting less painful and having longer breaks where I still "feel" it but it doesn't hurt.

After 14 days of a headache that was different than what I was used to I went to the ER at the urging of my wife and had a new CAT Scan. The ER doctors said it looked normal and said I should follow up with Dr. Black but since he was unavailable to see me and I had already made an appointment with Dr. Watts several days before going to the ER It was decided that I could just keep that appointment.

I often have the feeling that I have something "wrong" in my head. A discomfort, something like a pressure but below my threshold of pain. This happens a LOT and when it does I feel less able to focus and I can't think properly. I often tell my wife that I feel "stupid."

For as long as I can remember I have felt fatigued. I don't seem to have the energy that other people do. Recently I found out that I'm not breathing properly while I sleep. Dr. Becker has been treating me for this with a CPAP machine and that seems to have helped some, but I don't feel that it's solved the underlying problem. I think I've always slept very very badly.

Some time during this year, I've started developing a new and disturbing symptom, where I will spontaneously fall asleep during the day, and then for several hours I will try to get up but not be able to. I have feelings of weakness and fatigue in my limbs to the point where I find it very difficult to move. These days where I feel intensely tired and have these debilitating bouts of daytime fatigue often seem to come in between days of bad headache attacks. The pattern seems to be something like a long period of bad headaches, start to feel better for a few days, then have 3 or 4 days where I have the above described daytime fatigue, then maybe a day or two of feeling relatively normal. I've written up a whole page describing this intense feeling of fatigue.

I recently learned that one of my sisters has something called ideopathic hypersomnia, and I wonder if it's related to my problems. My other sister has recently been diagnosed with B12 deficiency and my paternal grandfather had Parkinson's disease towards the end of his life.

I've recently had discussions with my family where they reminded me that I had strange sleep behavior when I was a child. My sister told me that I would do things like spontaneously fall asleep and slip under the table to the floor while playing board games.

I've known since I was young that I have learning disabilities and, as an adult, have been tested and discovered that they are fairly severe. I've been told that this is likely unrelated to my headaches; I have a suspicion that the learning disabilities, the sleeping problems, and the headaches are probably actually related in some unknowable way.

Dr. Phillip Aronoff has been treating me for several years for exceedingly high triglycerides. When I first went to see him they were in the 1400 range, which I understand is outrageously high. Dr. Aronoff also has treated me for acid reflux stomach problems and successfully treated my h. Pylori.

Also, I have been shot in the leg. This happened about a year before I started getting the cluster headaches. The doctors did not take out the bullet. Although I'm relatively sure it's unrelated, it might be a point of interest because I often describe my cluster headache pain as being many times worse than any of the pain that I felt after being shot.

There is a spot on the back of my neck that when my wife presses very hard on it, it doesn't relieve the cluster headache pain but makes it change in an almost indescribable way.

With the way my clusters have been evolving and the more and more common occurrence of the Migraines I begin to question whether I could ever return to a regular 9-5 job. I am very lucky that I currently can make a living while setting my own hours and doing the work when I am able, but even this very flexible schedule is becoming strained. I fear I may loose my current clients because I am getting too slow.

I keep a headache journal at: it is by no means a complete record as I long ago got discouraged with trying to record all my cycles but it may contain some useful information.

So, in summary, I'm very messed up and need help. : )

Murdock Scott


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