ET & Me

Nope, not the sweet little alien who warmed all of our hearts when we were kids. This ET is quite real.

I’m talking about Essential Tremor. It’s a neurological disorder that causes a rhythmic trembling of the head, hands, and other limbs.

Prior to March of 2012, I always thought that any kind of shaking like that was caused by Parkinson’s or some kind of withdrawal. WRONG!

Visit the International Essential Tremor Foundation for more info

I remember it like it was yesterday. March 2, 2012, I was working the closing shift at work. I had been there for about an hour when my hands began to tremble. I thought to myself, have a soda, get your blood-sugar under control, and get back to work. I sat down in the break room with my pop, tried to relax, and that’s when things got crazy. My head, my arms, my legs, every appendage began twitching and shaking, completely involuntarily. My husband had to come get me. Everything seemed to be fine a few hours later when I went to bed.

The next day, I hopped in the shower, started to feel a little strange as I got myself ready for work. Again, about an hour into my shift, my hands and my head started shaking a lot.

The rest is history. I spent the next three months off work, with countless doctor appointments, blood tests, an MRI, and testing different strengths of my prescription, until we finally found the right dosage. Sometimes I get breakthrough tremors. My tremor is mostly in my head and hands. I have a continual “yes-yes” nodding of the head, and my hands shake like I’m nervous or having low blood-sugar. It’s pretty annoying.

The most frustrating thing of all, is that we never found a cause. Every single test the doctors ran came back normal. There is no family history of tremor.

I see my neurologist every six months or so now. He always asks the same questions and always gives me the same “field test” to check my reflexes and such. His answers are always the same, no matter my question.

“Any change inside your body can trigger a breakthrough in tremor. A cold, the flu, stress, not enough sleep, not enough food, etc…”

He seems to think that as long as I am tolerating my medication, and it is keeping the tremor under control, then everything is fine.

I have been able to pinpoint my breakthroughs to pretty much every time I menstruate. The neurologist said I could slightly adjust my meds during that time to see if it would help. It has been helping for the last few months. But every change in my medication totally screws up my internal clock. It’s miserable! The shaking makes me super fatigued, but the meds keep me from sleeping. Luckily it’s been working up until now.

If you’ll remember, I said I was taking a step back from the whole charting, and ovulation tracking. Well that also means that I wasn’t prepared for my period to start this month, so I didn’t start taking my extra meds to deter the breakthrough tremor. The first time I had a shaky day this month, I looked at my tracking app, and it was 6 days before my expected visit from Aunt Flo. The next two days, I was totally fine, and I got my flu shot on the second day. The following morning, Aunt Flo came a-knockin, 4 days early.

The next day, I started shaking again, and it’s been nonstop ever since. I have increased my medication 3 times now. It’s been almost 3 weeks. I am physically and mentally drained!! It’s almost as bad now, as it was last year when this whole mess started. My next appointment with the neurologist isn’t until November, but if there is a cancellation before that, they’ll call me.

I desperately need to find a new neurologist, but that is nearly impossible without a referral. Since my diagnosis, my lifelong family doctor retired (without my knowledge), and passed away shortly thereafter.

If and when we do conceive, I will have to stop taking my medication, as it is bad for the baby. I don’t know if I’m prepared for that. These last few weeks have been utterly miserable! Sleepless nights, extra long days at work, people staring at me, sore muscles… Imagine all of that, with no helpful medication, and raging hormones! The doctor has recommended stretching and yoga (de-stressing activities) to “naturally” help. I stretch a lot, and stay pretty relaxed when I’m not at work, but still, here we are.

Oy! So irritating to not have answers!! Oh well. We’ll just keep on keepin on, doing research, and praying for some real answers.

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