Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

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Latest Battle

Last Wednesday I attended my latest appointment up in London for treatment. This was week 8 in my treatment cycle; this extra week made a huge detrimental impact in my health. Find out what happened here.


Jaw tremor

A few days ago my jaw tremor returned, it is an on/off tremor at the moment and the more I use my jaw the more it tremors. I am using a baby teething dummy to protect my teeth and tongue, however the pain it triggers when the tremor causes my bottom teeth to bang against the tooth it has loosened on my upper row of teeth or my tongue often triggers off a seizure.

As you can see from the video, it is not to extreme yet, so the Botox must still have some sort of hold over it, but not much. I cannot wait for Tuesday when I see my neurologist for more injections.



Dystonic Jaw Tremor

Earlier on today my jaw developed a sort of tremor. It is extremely painful and my teeth constantly caught against my tongue and gums. It is hard to explain exactly how this tremor goes so I have uploaded the above video.

After taking two diazepam we eventually got the tremor to stop for a short while, however as soon as I tried to use my mouth it set the tremor off again. I am hoping this new symptom will follow the same pattern as all my symptoms when they started. It starts off seeming like it is constant and then gradually calms down so it is still horrid but nowhere near as frequent.

I would be very interested to hear from anyone else who has experienced this type of tremor. So please get in contact with me if you have experienced this or something similar.


New Neck & head spasm.

As I mentioned in yesterdays blog a couple of days ago I developed a new spasm. Its rather painful in the neck and gets a lot worse when I am tired.
I have spent the majority of today with my webcam on so that I capture this new spasm to show you all.
If anyone else experiences anything like this and has tips on what helps them please leave a comment as I’d love to hear your views.



TENS Machine in action

This video will show you how I use a TENS machine to counteract the spasms. By placing the pads on my arm and putting the TENS machine on full power it causes the relaxed muscles to contract, which in turn forces the spasming muscles to relax.

The signals the TENS machine sends, forces the muscles to  pull my hand upwards (you can this several times) and forces the hand to relax.

Please ask if you have any questions.


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