Posted in Archive, January 2014

The Wonders of Medication

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It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.

Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.

On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.

My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

One thought on “The Wonders of Medication

  1. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    Rebecca, Lovely to hear your alien is relatively under control at the moment. Your attitude is always a breath of fresh air and an example to so many. xxx -Pamela-

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