My trip to the Neurologist

Tuesday, August 09, 2005

Yesterday I headed off to what has become my annual Neurologist visit. This visit was mostly about what to told about the seemingly increased seizure activity. Epilepsy has been a problem since the first day of experiencing cluster headaches. Clusters keep me awake and the seizures cause sudden exhaustion. So much for having any sort of a sleep cycle.

The neurologist was in quite a good mood as I was his last patient before his vacation. The bonus of being last was he took a lot of extra time with me because the seizures and clusters both have a lot of atypical symptoms. For example, he has a diagnosed me with having Hemicrania Continua because the cluster headaches more frequent than most chronic sufferers usually get. But besides, they have to write something down in my file. He does acknowledge though that they are cluster-type headaches. Which I think is good. Mind you I would much rather be diagnosed with a tension headache. If I had a choice I would not have anything that would require me to go to a Neurologist. No disrespect to those of you dealing with tension headaches is intended.

I arrived at the appointment completely unprepared. After the past six weeks I am surprise I arrived at all but to my amazement on time. We went through the usually formalities. Going over why my gp wanted me to see him; explaining in my own words what was going on. Then had a few neurological tests performed. Followed his finger from side to side and up and down. Counted fingers in various positions. Walked in a straight line one foot in front of the other then walked normally. He scratched the outer soles of my feet. Checked for muscle weakness and reflexes. Then finally a few co-ordination tests. He ordered more blood work and suggested I should think about taking Topamax. Could have sworn I have tried that early on and had some sort of weird reaction to it. Will have to check my Headache Diary. Sure comes in handy in times like these. That is something every headache sufferer should have.

After all that he is still stumped or at least not telling me what he thinks. He sounded like I past all of the tests. He ordered yet another EEG. This will be the third one in 2 years; as well as the 2 prior CT scans on my head either. Since the last 2 EEG,s were normal this might be a good time to start to do more specialized tests.This one will be a specific type of EEG that is "fine tuned" as he called it, to induce a seizure. Not quite sure exactly how this one will be different than the last two. Will they add sounds or movement? The last 2 EEG,s have been normal now might be time to do a little more specialized checking! We will just have to wait and see what happens.

Seizures drain the life out of me as it is. The last thing I want is to try to induce one. I can already feel that day will be a bit of a right off depending of course how many they induce. But if the results bring us any closer to solving what is going on then I am all for it. Also he wants to have a chat with my girlfriend, Mindy to get my background information on what she observes. She has the unfortunate pleasure of seeing me shake while sleeping though I can never recall if anything happened. Sometimes recalling events is difficult because I tend to "blank out" then turn into a bit of a zombie. In addition, I am not always conscious for each bout. Makes diagnoses a tad on the tricky side. Right now I don't officially have seizures because the test do not show anything but the treatments for seizures work. Go figure.

There is one thing about trying to figure out what is happening to me that kind of bothers me. Does finding out really matter? I mean will my treatment change? As far as I can tell everything has been tried. Controlling the pain and aiding me to have a some what everyday life will still be the goal. More than likely there will not be any significant changes. Regardless of the outcome of the tests nothing will really change other than the fact that a disorder will be written into my medical file for future reference. The only things I can think of for the situation to change is if the disorder is somehow degenerative or if I am lucky, fatal. I only say lucky right now because of the immense, unmanageable pain of late. Don't worry I am not depressed just exhausted from battling for so long with this. But no matter what the outcome from all the tests, medications, appointments, and advice, myself and those around me will still be affected by the results of it. The only thing that is known is the pain will not be going away anytime soon. That my friends, is the most disturbing and discouraging part of it all.

It's odd that you can get so anesthetized by your own pain or your own problem that you don't quite fully share the hell of someone close to you.
-Lady Bird Johnson



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Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*

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