I recently made a post about my thoughts on God, speaking about my personal beliefs and that God does not exist to me(still doesn’t, sorry no revelations here). And in that post I started off by saying that I had a feeling something big was about to change in my life and that it wont be good. Sure enough, I was right. My gut feeling has never failed me so far.
A big change did happen and it really isn’t good, in fact this news felt worse than when I had first received my epilepsy diagnosis.
I made my pilgrimage to see my neurologist, I am writing this about 5 hours after the appointment. This was the worst appointment I have had in a long time, and not because of the doctor. He was ok, very calm and focused. He had just inherited my “case” and reviewed all of my many tests, EEGs, EMGs, MRI’s etc (I have had a slew of tests I can’t remember). His specialty is movement disorders, and kind of niche area of neurology that sucks for anyone. I’ve always been told that my jerking about and myoclonic episodes weren’t related to my epilepsy. Now it’s a whole new beast.
This doctor is brand new to me so he looked all the way back and compared what was happening back then to now. And now is very different and hard to work out, personally.
He did the typical neuro exam, arms out, arms in, touch your nose touch my finger(failed), run your leg over the other etc. Asked me if I had thyroid issues(I don’t), and then he asked me if I had anxiety. I said that’s what they tried treating me for (unsuccessfully) and nothing worked until I started on the AEDs and then everything in the anxiety department was ok, again writing it off to epilepsy after finally getting that diagnosis. I shut that down real quick, never get sucked into the BS anxiety trap. And sure enough during this entire test my tremor was ever so prevalent and persistent.
For the last month or so the involuntary movements and tremors have increased drastically and not the seizures, in fact those have been pretty ok. Not too bad, and not too often(doesn’t feel like much of a win anymore). He tells me, I definitely have something called Essential Tremor. That has been causing all of my shaking, even involuntary head movements that make me look like I am a crack head. The klonopin wasn’t helping and I was starting to get embarrassed to go out in public (like my class, if you’re reading this Dr. Mike, sorry I’ve been absent, I swear I’ve been doing my reading!)
So without me even asking, I didn’t feel the need to, he told me there is no cure.
He went on into prescribing extended release propranolol, a beta-blocker that is considered the “cornerstone” of the first wave of treatment for ET (yes, I am an alien now, my dreams have come true, just in a more fucked up way). And this was the advice he gave me as I was leaving his office, “All we can do now is cross our fingers and hope that this works”. I have never, ever been told that. He didn’t really look me in the face or say much after that, and just let me leave. It was a weird moment, where all I could think of is how do I explain this to my mother who was waiting in the lobby.
Obviously, I took to doing my own research the moment I get home and alone. And the next steps are scary, and devastating if medication doesn’t work. Which is probably why he spared my feelings, and just went right into drug treatment and hope.
This is a bit of a mystery illness, that has so little research and options. Essential tremor, as I have been experiencing, affects every day life. Small things like eating, drinking and writing become difficult. Sometimes bringing a glass up to my mouth to take a sip starts to get out of control. Writing with a pen on paper is messed up for me now, my handwriting has changed a lot. Stabbing myself in the mouth with my fork when I eat happens too. It’s not all the time, but it’s enough to irritate the crap out of me. It’s been happening more and more. My regular water-glass has changed to one with a lid and straw. Which is why I went to see the neurologist again, all of this was unusual.
It is progressive. It has no tailored treatment. It’s a genetic phenomenon.
It has no cure.
It seems that life enjoys throwing this bullshit at me. I have just come to grasp and take hold of the epilepsy that has taken over my life and the occasional myoclonic jerking. But there are things I’ve been doing to control and lessen the absence seizures and jerking that help. With essential tremor all I can hope for is that this medication helps. By help, statistically speaking, I may gain 50-60% of my control back. MAY. IF it works. And even then, it’s a place holder until the tremor gets worse and can’t be controlled with medication anymore. At least with my epilepsy there are more options, research and therapies that work! With this, there is practically nothing.
Now, I have this, and it feels terrible. I am 25 and the words “no cure” have been said to me twice now.
All I have to say now is, these drugs better work well. Because what comes next if that fails me is something I am not ready for.
These videos are both educational and fucking terrifying, but they helped a little. Except for the second one, if you’re emotional don’t watch that. It’s depressing AF.