Movement disorders suck...

When I was younger I went through a stage of wanting to be a tattoo artist but there was one slight issue - I had shaky hands. Not massively to the point of affecting my day to day life but there was definitely a slight shake there and I always assumed it was something to do with anxiety.

In my mid to late 20s I then noticed that once in a while my head would twitch, like a side to side ‘no’ shake. Again I assumed this was something to do with anxiety and as it didn’t happen all the time I wasn’t worried. One bizarre thing I did notice was that if I went to pick up a cup to take a drink whilst engaged with someone, my hand and head would ‘freeze’ before getting the cup to my mouth. At the time and for years after I had no idea what this was, looking back now I think it was my head about to twitch and my body trying to hold it back.

In my 30s the head shake has become more prominent, especially when looking over my left shoulder. When mentioning this to my Mum she told me that my biological Dad’s (a story for another time) Mum used to have a constantly shaky head. When I called Anthony (biological Father) I learned that his Mum and 2 sisters have this shaky head thing and that he has it in his hands. Not going to lie, I was absolutely devastated! I started looking up tremors and discovered essential tremor - this can affect many parts of your body including your head and hands.

Now although it’s not going to kill me it is progressive and the thought of any part of me shaking/twitching/jerking uncontrollably is deeply upsetting. The embarrassment of people noticing and also how tiring it is for your body to be constantly fighting a tremor. I have also avoided meeting that side of the family and deep down I know that a massive part of it is not wanting to see how I may be in the future.

Over the last 2 years it has worsened. I can feel my head tremor pretty much all the time and it’s so much more noticeable. It’s started to affect my confidence in social situations, started to stop me from seeing my friends (as I don’t want them to notice) and also having an impact with work as again I don’t want people to notice the progression when sat in an office or attending a meeting. As it’s significantly worse I have been doing a lot more research and after seeing a specialist (I paid for private as NHS was a 54 weeks waiting list) it appears that I actually have something called a cervical dystonia tremor.

The head movement is pretty jerky and is not alleviated with alcohol or propranolol. This means I have two main types of treatment available to me. The first being Botox injections into my neck muscles (which comes with its own challenges and risks) and the second being to take some kind of medication. I was prescribed Gabapentin (an anti convulsant), took one and decided it wasn’t for me. I heard so many horror stories and do I really want to be on medication for life when my only real issue is embarrassment?! The NHS has taken some blood samples from me to test my dystonia gene panel and as of today I’m waiting for the results.

So... here I am, twitchy/shaky head, embarrassed, sad, tense, worried, depressed, angry, upset, stressed, trying to stop the tremors, trying to not think about it, trying not to worry about the future, trying to get back into meditation (hard with a jerky head), trying to not let it turn me into a recluse, trying to embrace it, trying to be open about it, trying to find alternative therapies, trying to share my story and trying to raise awareness.

Yes I’d desperately like it to fuck off but I have to remember it’s not going to kill me and I have to be strong and not let it become me. I need to not care about it, I need to leave it powerless, to not be embarrassed and to embrace it. Easier said than done but I’m determined to give it a bloody good go!

For anyone that has anything ‘outside the norm’ that you have to cope with, feel embarrassed about or try to hide... much love and respect to you. It’s so hard to not let it affect you mentally and come to terms with being different ♥️

I’m always keen to hear others peoples stories so please reach out if you have any advice or just want to share your experiences

Love H xx

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