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

Trauma & Dystonia

Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.

Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!

I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!

I can only hope that as awareness for the condition spreads the attitude around it changes too.

Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE

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Comments on: "Trauma & Dystonia" (10)

  1. Same here!! At first the previous Neurologist was due to my near death appendicitis when I was 16 thats 19yrs ago!!

  2. Same here!! My previous Neurologist tried connect my near death appendicitis to my condition! But that was 19 years ago!!!

  3. Margaret said:

    I fell at work and after two weeks my head started to jerk to the left….terrifying that you have no control over your own body. After two years of running to hospital for x rays and mri scans it was eventually referred to a neurologist ..who diagnosed me with post Traumatic Cervical Dystonia due to my fall at work, I slipped and tried to save myself and ended up flying through the air only stopping when I hit the wall and banged my head quite severely, it did not knock me out but I was stunned for a few minutes……and I may add I am now on ten meds a day and botox into the muscles in my neck every three months, but as I have post traumatic dystonia it does not respond well to the injections as I am never completely free from jerking.

    • Hi Margaret, I was assaulted on duty, and among severe neck and back injuries, I was diagnosed with traumatic dystonia. I have tried Botox injections in both my leg (perineal nerve paralysis with foot drop) and my neck, where my shoulder goes up to my ear and my left hand goes numb and shaky . The injections did not really do anything, and the symptoms are getting more frequent and painful. Have you found anything that has worked for you? I am willing to try just about anything, I have not been able to get 3 straight hours of sleep in months. If you could recommend any other treatments to try, I would greatly appreciate it. Thank you

      • Margaret Fletcher said:

        Hi Anne, sorry to hear of your dilemma . I haven,t had a nights sleep in four and a half years so I can empathise with you 100%. What medication are you on? I take ten a day…..let me know to see if you are on the same as me or not.

        Speak soon

        Margaret

      • Margaret, Thank you for getting back to me, I do not know anyone else who suffers from Dystonia, so I really appreciate your time and advice. As far as Dystonia meds, I am not taking any. I am on meds for depression, ADHA and PTSD. I was getting the Botox injections, which my Neurologist is willing to continue to do, but my other symptoms, foot drop, perineal nerve paralysis, and left hand numbness and shaking seems to be confusing
        to my doctors. They are not sure if it is Dystonia related or nerve compression. I am pretty sure the left hand is Dystonia related because it will twitch and I can not stop it, but I also have a neck injury with nerve compression that I need surgery on in the near future. Do you think I should go back to the Botox injections, maybe to keep the Dystonia from keeping worse, or talk to my Neurologist about another medicine? I think I would lose my mind if I have to go years without a decent night sleep. I am exhausted now as it is. Thank you for your time.

        Anne

      • Margaret Fletcher said:

        Hi Anne, Dystonia can be extremely difficult to get diagnosed, I was running to doctors, the hospital for x rays, scans, mri scans, physiotherapists , consultants then back to the hospital were they sent me home with a prescription for paracodin. ( wtf ) I cried and jerked the whole way home. I was eventually diagnosed after two years with PTCD. I almost did backward flips that this constant jerking, constant pain, constant tingling in my hands and arms, overwhelming tiredness, depression, anxiety and mood swings finally had a name. As for botox, I said I get the injections every three months into the muscles in my neck, but my neurologist told me that it does not work so well on Post Traumatic Cervical Dystonia. Next I will give you a list of my medication:

        Pregabalin 50mg ( Lyrica ) x 2 daily
        Pregabalin 100 mg x1 daily
        Escitalopram 5mg x1 daily
        Escitalopram 10 mg x1 daily
        Kemadrin 5 mg x2 daily
        Naprosyn ec 500 mg x2 daily
        Zolpiderm Tartrate Teva 5 mg x1 nightly
        Halcion 0.25 mg x1 nightly

        The Zolpiderm I take at night it puts you over to sleep, but if you wake which I do many times a night it’s gone out your system. I had to go back to my GP to explain I was exhausted from not sleeping and was making all the symptoms of dystonia WORSE ( if that’s possible ) so he prescribed the Halcion but I am only allowed one or the other NOT both together as the Halcion are addictive, the Zolpiderm are not.

        When I read that your shoulder comes up to your ear when you jerk you could have been describing me….lol. I am also attending a councellor on a weekly basis as I was diagnosed as having severe depression. Depression is a major part of dystonia. My problem is I cannot accept the fact that the fall I took at work has left me with this horrendous condition and that it is permanent.

        Hope that helps Anne, if you want to email me direct you can, bit more personnal.

        best wishes

        Margaret

      • Margaret Fletcher said:

        Hi Anne, Is everything ok???. Just wondering as I have not heard from you. I hope my email did not frighten you but I was trying to give you an idea of living life with dystonia.

        Best wishes

        Margaret

  4. […] focus on my past and informing them it has no impact on my medical situation. Click on  VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I […]

  5. exactly. I was depressed after losing my mom, home, work, lifestyle, etc… and now my GP relates everything back to my depression and that I’m still in it or about to fall back in it. Ridiculous — it was a point in time and now it is over. My dystonia has nothing to do with that. The Dystonia was here 15 years before that.

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