Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Medication Minefield

When diagnosed with Dystonia there is a minefield of medication surrounding you. One wrong move and your limbs are distorting and spasming at a rate that threatens to hospitalise you. A medication that works rather well for one person may have dire side effects on another. Keeping a diary of what medications you have tried and your reactions can come in handy.

Botox injections is a widely used treatment for Dystonia, and in many offers a degree of relief from their symptoms. In the majority of sufferers the injections are administered every 3 months. Personally for me, I find that the injections only last around 5 to 6 weeks so my neurologist administers my injections every 6 weeks.

Medication can be very hit and miss, so finding a dosage that works for you is important. For example, Diazepam is a commonly used muscle relaxant to treat Dystonia. For me if you give a very small dose as a one off I will be fine, in fact I will sleep fantastically well. However if you give me a second dose that same day, or the next day I will have a psychotic break. The last time this happened I seriously thought that if I had my leg amputated I would be cured of Dystonia. It makes no sense, but at that time I was convinced.

One of the issues I have discovered since becoming ill is persuading Drs to play around with medication. Often this can unsettle them, especially when treating a condition such as Dystonia that many have not come across before. Due to this I have found many Drs unwilling to change medication or try different combinations, it has often resulted in me battling before they agree to try. It is sad that this is the case. I have said it many times before and I will say it again, the more awareness there is the better treatment we Dystonia sufferers will receive.

On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .

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Comments on: "Medication Minefield" (2)

  1. I agree that doctors should be flexible when prescribing: successful treatment always depends on an interaction between drugs and the patient – so whatever is known about a particular drug generically must be fine-tuned.

    Diazepam is a sedative as well as a muscle relaxant; sometimes increased doses can result in one’s conscience being put to sleep – with the result that one, paradoxically, one can become overly active (instead of becoming quieter – even when the drug is being prescribed for its muscle relaxant effect).

  2. It’s unfortunate that you’re suffering from this disease. I’ve never heard about it before, so I had to research it. I can see why you’re wanting to experiment with different medications. How much do the Botox injections cost?

    Alex Jennings |

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