Friday, March 8, 2013

A serious post

This post has been rolling around in my head for awhile. Actually, not the post, but the information. I've been processing, researching, looking for others talking about it, etc. This is also sort of a coming out for me. I haven't talked about it to very many people.

About a month ago, I was diagnosed with a condition known as Essential Tremors. It used to be called Benign Essential Tremors, but they can be anything but benign. The tremors make it hard to drink, eat, write, apply make-up, even pluck your eyebrows. Anything that requires fine motor movement is affected.

Essential Tremor (ET) is a neurological condition with no known cause. And while the tremors may make many people think of Parkinson's Disease, they are two different beasts. There is also no definitive test to diagnose ET. Rather, it is diagnosed through a process of elimination. My neurologist gave me a thorough physical exam, testing strength from different angles of muscle use, which is also helpful in gauging the tremors themselves. She also tested my reflexes, at some points on my body that I didn't even know were reflex points. Turns out, I'm hyper reflexive. Hit one point, they all react and I can't begin to control it. And it is very likely related to the ET.

We also discussed family history, thoroughly. In my reaching out to everyone in the family, I discovered my aunt has tremors, though she didn't verify a medical diagnosis. I recall my grandmother shaking, though neither my mom or her sisters have any recollection of same. So is my condition familial (hereditary)? We're not sure. We determined that my thyroid is fine, as is some level of systemic inflammation measured though blood work. So she came to ET as a diagnosis. At this point, we're not going to do an MRI; she sees no reason to, based on my symptoms to date. But if symptoms change, I'll be signing up for that. As an aside, I tend toward claustrophobia. Yay.

So what are my symptoms? A whole lot of shaking, primarily in my hands/arms. Most people that noticed told me that, perhaps, just maybe, dear god woman! cut back on your caffeine. Yeah, I drank A LOT of coffee, and not that wimpy decaf stuff. After dumping my consumption to a mere one or two cups a day, and supplementing with decaf (because, damn it, I love the taste of my coffee) I was still shaking. Just as bad.

There are times I shake so much that writing is a challenge. Oh, I can write all day long, but reading it might be a bit of a challenge to others. I've learned to print more. There are times I shake so much that drinking is a challenge. I've learned to not fill my cup so full and hold it with my left hand, which shakes just a wee bit less than my right. There are times I shake so much that eating is a challenge. Peas or corn on a fork? Forget it. I've learned a spoon can be my friend. I do much better with foods I can stab with the fork.

But it goes beyond shaking. I also have muscle twitches. It might be my arms, my shoulders, my legs, a hip, a back muscle, a neck muscle. I liken it to an earthquake. The pressure builds up in there and suddenly lets loose. It might be a small twitch, or something much more powerful. I once threw my mouse across the room. I didn't have a good hold on it and my arm twitched. Rather forcefully.

I also have some sensations, for lack of a better word, deep in some of my larger muscles. Particularly my thighs. They, too, are part of the whole. The only way I've come up with to describe this sensation is to say my muscles are humming. Deep down inside, like bone-deep. This part of it comes and goes. I'm grateful when it disappears for awhile because it is beyond annoying. When I'm on my feet a lot, it makes my legs tired really fast. When I'm sitting or lying down, they hum constantly, like they're plugged into an outlet. It's sort of a pulsing, just like the shakes. They've now been humming for three straight days, 24/7.

Recently, probably because I'm paying much closer attention to what my body is doing, I've noticed my speech patterns are different. I swear there are times that I stutter. Not like continuously, but just a hitch or two while saying a word. Or my tongue will tangle while I'm talking. Or I just can't find the word. It's annoying and this aspect really bothers me.

So did I just wake up one morning with the shakes wondering what the hell was wrong with me? No, it was very gradual. In my recent memory, covering a period of many years, I don't remember NOT shaking to some degree. I've tried to think back to milestone moments or particular times I remember well to determine if I had the shakes at that moment in time. I can't do it. But during the last year or two, it is measurably worse. And when I'm tired, it's worse. When I'm dealing with a lot of stress, it's worse. If I get carried away with caffeine, yep, you guessed it. It's worse.

What is the future going to be with ET? I have no idea. For some, it remains an annoyance that they live with. For many others, it progresses and gets worse. Much worse. It has the potential to be debilitating. Life-altering. I'm part of the group for whom a drink will calm the tremors, but only for a little while. It doesn't work for everyone. And, understandably, isn't recommended as a continual treatment.  There are medications that help, but don't cure. The most accepted medication is a beta-blocker more commonly used to treat high blood pressure and heart disease. Sometimes, anti-anxiety meds are used. My aunt tried Xanax and didn't tolerate it well. It basically zoned her out. There is also a surgical procedure available for when it gets really bad and/or intolerable. It's a procedure known as deep brain stimulation. In short, a device is implanted in the brain that supplies an electrical current to the area of nerves responsible for the movements of affected areas. I'm not fond of the idea of a cattle prod being buried in my brain.

In part, I'm still processing all this. I've started  more in-depth research. I'm searching for others to talk to. From what I can tell, there is no support group anywhere in the state of Idaho for this. I'd rather not medicate if I don't have to, so I'll start searching homeopathic methods of treatment. I've read that acupuncture can help; so maybe I'll look into that.

When I have a bad day, I try not to let it get me down. When others offer snarky remarks, I do my best to ignore it, or alternatively, stand up for myself. Depends on who and what. When someone is dismissive, I do my best to not take it personally. It's just one more facet of me that I may not like, but will have to learn to deal with.

Am I scared? Yes, deep down, I'm terrified. But I'm tough and I'm a survivor. Like so many other things in life, this will be dealt with one day at a time, in the best way I know how. Whatever that may be.


  1. Sorry about taking so long to read this. I am still sharing a computer with my daughter. This means I hardly ever get to use it. Ughhh...

    Anyway, I'm glad you are such a strong woman. This does not sound like an easy thing to deal with.

    Do you also have restless leg?. I get that sometimes. And my daughter gets something similar to what you describe as the "humming" in your legs when she is stressed. Stress can do a lot to a person.

    What about exercise to help? You know I think that can benefit almost every circumstance.

    It's almost as if your body is on high alert. I wonder if hormones - meaning menopause - could have anything to do with it? My grandmother also trembled a lot.

    1. I asked my doctor about restless leg, because my mom mentioned that, also. While this affects my legs, it's a different set of symptoms.

      Exercise is of great benefit. The bad part is, the exercising and release of adrenalin can cause the muscles to be extra shaky for several hours. I'm going to put together some sort of program for myself, especially for my legs. It's finally warming up so I can start walking again without being totally miserable. I'm also going to get out my yoga stuff and see if I can put together a good routine of stretching, which should also help my muscles. If I have hopes of avoiding meds, I'm going to have to get busy with this!

      My body usually is on high alert. I tend to hold stress in, which is not beneficial at all! And I'm sure it doesn't help that the peri-menopause years have begun. I swear, if it's not one thing, it's another. Isn't it just great being a woman?!

      I sure hope you get your computer back soon! I hate having to share mine. But if I see them using it for games and such, I pull rank and take it back. lol