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

Posts tagged ‘Essential tremor’

Which Open Door Shall I leap through?

Despite it being the third most common movement disorder Dystonia goes almost unknown to the public. It lingers in the shadowy background letting its brothers, Essential Tremor and Parkinson, take the limelight. By slithering along in the back alleys it can prey on its victims with ease, bringing devastation to those it touches. The medical profession cowers in its presence, refusing to open their eyes and admit what they are seeing, they send you to a psychiatrist instead, not understanding that this just gives the Dystonia more time to make itself at home in your body and wreak havoc when it sees fit.

By the time the Consultant realises it is Dystonia, you have already been suffering for so long. The spasms leave you drained from the pain, and you are desperate for any sort of relief. Then it seems like a miracle has happened, the consultant whips out a tiny bottle that brings promises of relief from the spasms, the pain, the fight. A few injections of this will sort you out, he promises, he tells you it won’t cure you and you will need it again in three months. You are over the moon, such a long period of relief seems too good to be true. The consultant, who seems to hold all the answers you have searched for, does not warn you that one day you may be fighting him.

Five weeks into your pain-free period agony grips your jaw, the spasm pushing it across to the point you’re sure it will dislocate. Emotions run through you: anger, sadness, heartbreak, devastation. No one warned you how hurt you would feel when the Dystonia reared his ugly head agony. You count the weeks on your hands repeatedly, this should not have happened for weeks yet. As the reality sinks in that you still have to wait at least 6 more weeks for more of the injections numbness sweeps through you. You feel so tired. A small part of you wants to curl up in a ball on the floor and cry.

You try desperately to contact your consultant but he ignores your pleas for help. Who do you turn to now? There are many open doors you could run through, but which one holds the key to help? Who will help you now? How many more Consultants are going to abandon you after dangling hope in front of you?

Which open door shall I leap through?

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Video

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.

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