New Symptom

I do most of my computer work first thing in a morning, as that’s the only time my brain is clear enough to fully concentrate.  I’m a trained touch typist and hold my thumbs in the air over the space bar when I type.  Earlier on this year, I noticed that my right thumb was trembling and when my hand was hovering over the keyboard my whole hand was kind’ve vibrating (that’s Bertie in the background woofing on the video, he loves the sound of his own voice!).

My heart sank to my boots.  My maternal Grandmother and my Mum both have a Benign Essential Tremor, often an inherited condition due to a faulty gene.  If you have a parent with an Essential Tremor you have a 50% chance of developing one yourself.  Of course it would be me – it couldn’t be my bloody Brother could it, who has escaped every genetic disease in the family while I’ve inherited the sodding lot.

I asked my Mum when her tremor started and she said about mid fifties.  I told her mine seems to be worse first thing in the morning and she confirmed that’s how hers started too.  Fuck-a-doodle-do.  Mum’s tremor is so bad now that she can’t write at all and struggles to eat.  On the plus side, it does just affect her hands – it could be worse, as Essential Tremors can affect any part of the body including the head and voice.

I’m starting to think that God has it in for me.  My passion, and what gets me through the days apart from my Dog, is my photography.  Due to my severe eye floaters, I already struggle with my vision especially editing my shots on the computer.  Having a tremor will be the last straw – how can I take sharp photos if my hands are trembling?

I’ve made an appointment to see a GP in October.  I’d love to see my own GP, who knows my Mum and my 22 year health history, but there is nothing available with her for the next 2 months.  As it is, I’m seeing a doctor I don’t know from Adam and still having to wait 4 weeks!

There is no cure or effective treatment for an Essential Tremor.  There are a couple of drugs to try, both of which made my Mum faint (they lower blood pressure and mine is already low).  In any event, I’ve tried the first one Propanolol for my tachycardia (before I knew it was down to MCAD) and couldn’t tolerate it.  You can also have deep brain stimulation but I’m not sure I fancy the risk of stroke, weakness and loss of speech which goes along with it.  Alcohol can improve tremor, which was my Mum’s original excuse for starting to drink.  Having an alcoholic parent I’m not sure it’s something I’d try, even if I could tolerate booze (which I can’t).

So it looks like I’m going to have yet another condition to deal with.  I wonder if I can get into the Guiness Book of World Records for the person to have the most medical conditions at any one time?  So far it’s 9 and counting: ME, EDS, MCAD, Scoliosis, Endometriosis, Adenomyosis, Migraine disorder, Peripheral neuropathy and now Essential Tremor.  I only need another 3 and I’ve have an entire football team of health problems – my very own Manchester United of the medical world.  I wish I had Man Utd’s finances!


8 thoughts on “New Symptom

  1. Hypermobility Syndrome India/Viv

    I am really sorry to know that it could be benign essential tremors. I will wait for your updates in Oct.

    I know what you mean by having your own football team of conditions… every year I notice a new problem or the new loss of a skill and it feels very unfair sometimes. I feel despair. In my limited life, my sanity and happiness depend a lot on being able to type, and I felt I was crashing when I started having abnormal movements (jerks, not tremors) in my hands. It was diagnosed as dystonia for the lack of anything else and time will tell more.

    I wish you good luck and hope the condition will be well managed, whatever it is. Please stay strong and take care of yourself.


  2. Lis

    I know this sounds strange. It was for me to, and hard to get my head around. But check out emf sensitivity. See if it is happening away from your computer or other electronics.


  3. Karen, The Walking Allergy

    How irritating! Much sympathy! So frustrating, yet another thing to deal with. Sympathy aside- you’ll figure it out, I’m sure you will. Did you know that I used to be an assistive technology consultant? I miss my job. So I’m going to do an AT consult for you, my dear!

    First of all go into the computer’/ accessibility panel, and slow down (or turn off) the key repeat rate- avoid double letters.

    Are you any good with dictation? I can’t type or dictate for to long- but if I switch back and forth, I can get more done. Dragon Dictate and a good USB microphone are the hands down standard.

    Camera remote- When I was young, my dad had a remote ‘click’ for his camera. That way the camera could be on a tripod, and he wouldn’t have to touch the camera to take the picture. We’re talking..30 years ago? I think it was air powered. Ten years ago we had a camera with an external switch that our organization loaned out to kids with disabilities- they’d mount the camera in their wheelchair, position the chair for the picture, and then they would click with the external switch. It was electronic- wired into the camera. They must be at Bluetooth level by now… There must be something like that. In the meantime, maybe try the time delay- set to a few seconds, take the picture, hands off the camera, ‘snap’, photo taken. Not ideal, but possible.

    Maybe mount the camera? Attaching it to your scooter would mean it was ‘at the ready’, and you wouldn’t have to fuss with a tripod… Maybe a Gorilla pod would work? If the legs aren’t long enough, you can buy extra lock-line and add it is. (I’m sure you can buy a mount designed for the scooter, but it’s probably a ridiculous price!).

    My work for the day is done. Thank you. But, in all seriousness, I can completely understand how you must feel- especially when it is tied to the thing that gets you out of bed in the morning. I’m sure you will find a solution, but it sucks that you have to.



  4. Carrie

    I know this blog post was published awhile ago, but I came across it when I was Googling “tremor and EDS”. I completely understand what you’re experiencing and I hope you’ve found some relief. I have essential tremor (head and left hand – like yours, worse in the morning), migraine, Hashimoto’s, had surgery for scoliosis in 1985, POTS… the list goes on but my memory is horrible. Anyway, just wanted to comment and say that I can relate. Hugs!



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