On Monday, the International Essential Tremor Foundation released news that the neurological disorder ET has received new classification. With a introductory symptom of shaking–or tremors–most would immediately think Parkinson’s, but this new classification is officially differentiating the two.
Parkinson’s, as the world knows most famously as the ailment Michael J. Fox was diagnosed with at age 29 (I’m 29, red alert, red alert). A dear acquaintance of mine even has it, and it pains me to see the frustration build from pain, shaking, stuttering and fear of it taking over one’s life as it is degenerative.
I, on the other hand noticed a shake a little over three years ago. Concern started to build and I started with my doctor for answers. Leaving the office without answers and clutching papers ordering tests at the hospital. The same questions flew at the hospital as they did in the doc’s office:
Moderate to rare
College drinker-turned-social (2-3)
Other than cancers, we’re doing pretty good
I sat in a hospital bed for a day, blood stolen from my arm, urine collected for sugar/diabetes-related issues. No on diabetes and hypoglycemia. No on anemia. No on mono (?)…so I’ll continue kissing the boys…
The hospital Doc tried to blame stress, made me pop a propranolol and sent me off into the night. Spent all day in the hospital without answers…but the propranolol sent me on a worry-free high. Despite the unknown diagnosis, I felt awesome.
Talked myself into calling a neurologist. I had a mix of feelings, anger from incompetent health professionals and laziness. I hate seeing doctors, answering the same questions (on a scale of 1-10 how I’d your pain?)…I find it a waste of time.
I waited a MONTH before the neuro was free to see me. Eyes are good (which I was just cleared prior and my white blobs inside are just polar bear tracks and not macular degeneration…whew….2009-2010: a period of health fails), blood pressure normal, somewhat normal gait, still chubby–but healthy…just this pain in the ass left hand that acts likes it has a mind of its own, and occasionally the right.
Dr. Neuro still had no diagnosis. Wanted to call it benign essential tremor but was still unsure. I also mentioned migraine episodes during our visit. His eyes grew large and immediately started to scribble out an order for an MRI. Once in a blue moon, I have episodes of feeling faint, nauseous, see blips of light around my eyes and then I’m greeted by the thunderous pain that throbs my noodle for a few days. I needed that MRI right quick…
A couple weeks passed, while I waited for insurance approval for the MRI, meanwhile I’m thinking I have a ginormous tumor in my head. When I went for the MRI, I was a ball of nerves afterward, wondering when I’m going to find out the results. NEXT DAY, I heard I was free and clear…but what do I have?
The regular Doc visits ensued, only because I’m a slim case for having a disorder (finally diagnosed me as having ET) because it happens later in life for most people. Few cases of ET affect children, teens and young adults. We also started experimenting with medications…
(Must note that ET or BET has also been known as familial essential tremor, meaning that it is hereditary. I have no noted family history of tremors. The cause is still unknown, and research is lacking funding. The only theory/idea is that ET for caused by a genetic mutation passed along by a parent.)
Can’t live without this when I have a migraine. It is like super-duper Excedrin Migraine with an added sedative. I’m close to being a drooling nut when I take these…probably the best time to tell me bad news. I continue to carry these as an as-needed basis.
We tried anti-convulsants first. I could gradually increase my dose as needed, but even at a low dose I was lethally sick for a week. Did not notice a change. Asked to switch to another medicine.
We started small here. The only side effect I had was yawning…like every minute. Being an anti-depressant, it changed my mood for the best and helped control some of the tremors. Increased from 20 mg to 40 mg. My body got used to it and we increased to 60 mg. Felt absolutely wonderful until the Doc called to tell me about a new study about Celexa. Patients taking over 40 mg are at a greater risk of cardiac arrhythmia. Popped back into his office and asked what other options are there?
Migraine episodes were coming back full force and frequent. We added another anti-convulsant while on Celexa. Another week of feeling sick, but these little capsules were working wonders for a while. I read a study later on and found that they actually exacerbate tremors, so I asked to be put off. While one thing helped for something else, it was worsening another.
Honestly, I’m not too keen on taking all these pills, so I visited a chiropractor. A soft tissue and adjustment sessions made me feel wonders. He felt a giant muscular knot under the base of my skull, after releasing the tension, the headaches were resolved for a while.
I was advised to see an acupuncturist, but at the time whenever I needed pills, I just called my Doc to ask for a renewal without a visit. I admit laziness and lack of time for this one.
Alcohol controls the tremors, of course, temporarily. Obviously, there is the adverse of drinking to much and shaking later on while experiencing withdrawals. I’ve spent quite a bit of social time, getting too “social,” but limit myself to about 2 drinks during a social setting to control the shakes.
Effexor is a wonderful, yet evil drug. It is Jekyll and Hyde. Take a dose and feel wonders, miss a dose and you’re ready to rip a person’s head off. I stayed consistent until I opened the bakery. I miss it immensely. I’m waiting to afford insurance while being self-employed right now, so while I had a few pills left, I let it drain from my system. I think a detox clinic would have been a better setting. Nothing like getting a business ready to open when you’re detoxing. I was constantly reading people’s experiences online and knew I wasn’t going crazy, this is Effexor’s “norm.”
Now, they say ET is benign, but it is considered progressive. It only means that fine motor skills may diminish, vocal stuttering may increase, and assistance may be needed for eating, drinking, applying makeup…
Actually, Ozzy Osbourne has ET. It is the disorder that makes him stutter. The stutter mixed with that Birmingham accent is what has become the joke within popular culture….Sh-Sh-aarr-rrr-oooon!
In my case, my shakes have progressed in a way that I’ve noticed them as indicators for other feelings and sensations I should be feeling.
nerves and anxiety
I delivered my grandmother’s ecology at her funeral. Rather than that ball of nerves growing inside, which I usually get because I am not a public speaker or performer. As I spoke, I held my hand behind my back because the nerves manifested themselves into my hand. The poor organist looked at me, thinking I was super nervous. I was just holding my hand back so she would not get slapped by a rogue appendage.
I’m a klutz and I can’t tell you how many time I’ve broken toes in the last couple of years. (Damn ottomans!) I tend to notice shaking before I feel pain. I usually have to take a moment to figure out what area of my body hurts.
Lifting heavy objects, working at the bakery all day….I tend to work a little longer on a cake, especially if it has writing. I have spent a few times on a cake rewriting “Happy Birthday” and throwing the pastry bag across the shop out of frustration. It is tricky to keep a steady hand on delicate pastry details.
Novacaine increases tremors. I noticed this when I was having a wisdom tooth pulled. Right after the injection, I went into a full body tremor. I forced myself to tense up while the dentist did his work.
Plumping lip glosses
I love Lip Injection by Too Faced, but stopped using that and any other plumpers after I tried another product in Sephora. Left arm went crazy! Actually tried it again to see if I wasn’t being crazy…I’m not crazy.
I rarely consume caffeine, only when I have a headache and to mix with my Jack Daniels. When I do have caffeine, I tend to go into a full body shimmy.
Further progressions with ET have recently stated that there is an increased risk in dementia and findings of cognitive degeneration. I know I am a busy person and I have a hand in every pot, but I am noticing more memory lapses. I can be in the midst of something, yet forget what I am doing. This is the part that scares me. I tend to have fuzzy recollections of conversations and remembering tiny details. Good thing I scribble down every detail a client gives me on a cake order!
I’m also very unbalanced and stumble very easily (hence the banged up toes). I don’t have a full stutter, but I tend to tear up a few words, finding myself restarting a sentence. Annoying.
Right now, I’m in between visits and medications until insurance kicks in. I have looked into herbal substitutions, but have not found sense of relief as I did with Effexor. I have researched hospitals that specialize in neurology (Johns Hopkins, Cleveland, etc.) to find out more. When time and money permits, I plan to make some visits.
Surgical solutions, a thalamotomy or Deep Brain Stimulation are possible resorts…most likely is the symptoms worsen. I jusscant bear the thought of razors and scalpels near my brain right now…
Do you have or know anyone with ET? What works for you? What’s your story?