Posted in Archive, December 2020

Treatment Day

Currently I’m sat in the rush hour traffic on my way home from seeing my neurologist in London. It’s been a long day which upon arrival I soon expected to end in despair. Despite email confirmation of my appointment, my slot had not been added on the system. I’m a big believer in to be early is to be on time, and this slightly over anxious side of me always shows itself before appointments; being extra early was something I was extremely relieved about this time as it meant that they had time to order up the injections.

Watching the lights go past.

Thankfully I was seen and as usual I left feeling ever grateful that I’m under my neurologists care. He’s been a rock for me these last 8 years and continues to be. He’s agreed with maxfax recommendations to start me on Sinemet and recommended an alternative to try if this one doesn’t have the hoped for impact. Maxfaxs theory is that there are a small number of EDS (I’m CEDS) who also have dopa responsive dystonia and that I may fall into this category. I’ve not tried any of these medications before so I’m keeping my fingers crossed and hoping for some sort of dent in symptoms.

I’m planning on resting most the journey home as the injection site in shoulder always aggreviates my complex regional pain syndrome. More on this tomorrow.

Posted in Archive, november

Facial Spasms

Last night I got a bit of a shock. The left side of my bottom lip went into spasm, and the whole of the left side of my face looked and felt odd. Now I received treatment for my Oromandibular Dystonia on the 18th September, so I was not expecting this to happen so soon, as Botox injections last for around 12 weeks, and at the moment I am on week 8.

When I woke up this morning, my face felt and looked normal. Which gave me some relief. However after eating my breakfast I can already see and feel the spasm tugging at my bottom lip. It is in an extremely strange sensation. The only way I can describe it, is to imagine you have bad cramp in your lip and at the same time someone has a piece of string, which they have attached to your lip, and they pulling down on it.

On the positive side of things the spasm was nowhere near as extreme as it was before. I am hoping that as I have noticed the spasm happening at an early stage, I will be able to be referred for treatment and receive it before the spasms get to an extreme point.