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TOPIC: Myclonic Dystonia - pain and sleep problems

Myclonic Dystonia - pain and sleep problems 1 year 9 months ago #3893

  • Sarahnoz
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Hi

My 19 year old daughter started with Myclonic Dystonia when she was 9 and is now 19. From starting with a mild Dystonic tremor in her right hand it has now progressed to a full blown jerking in her left shoulder, arm and wrist. She suffers greatly with pain in her left shoulder and the jerking is affecting her sleep. :(

We have increased her clonezapam and melotonin which she only takes at night due to its side effects. She suffers from anxiety, depression, OCD especially obsessive thoughts and something called fugue (When the brain gets overloaded with stress, anxiety and obsessive thoughts it shuts down like a computer. Then it resets itself causing her to have Blank periods where she cannot remember where she is and what is going on around her. Although the resetting only takes a few minutes the forgetfulness can last for up to half an hour). :blush:

We have increased the does without asking the consultant who I will be contacting tomorrow about it. I am extremely worried about the clonazepam side affects and the pain she is in on her left shoulder.

Has anyone else had similar problems and has any suggestions to help my daughter. We do pay to have back and neck massages for her at least every 3 weeks, but willing to hear about any other alternative suggestions.

I am also concerned about her long term future regarding work and independence. She tries so hard and is currently studying animal care. I am worried that she will only manage a part time job as she gets incredibly tired and how she will cope with her OCD etc. She is not aloud to drive because of the fugue and I am concerned that employers will not understand how up and down her energy levels are and what state of mind she is in according to this. Has anyone else had similar problems, who have manged to find a good job where the employer is very understanding? :(

I welcome any comments and suggestions as I too am feeling unwell with depression and am just getting over shingles. I work 35 hours a week as we need the money, but I am also on alert all the time because of my daughters need for attention all the time. My work life balance is good and my employers are very understanding, but it can be extremely stressful at times especially as she self harms and has threatened suicide before she was put on antidepressants. :ohmy:

Thank you for any suggestions and any support

Sarahnoz
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Myclonic Dystonia - pain and sleep problems 1 year 8 months ago #3921

  • PHARMALIE
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I have had Myoclonic Dystonia and Cervical Dystonia for nearly 30 years and have tried all the types of medications available. I had serious side effects from taking Clonazepam and although it works for some people I would not recommend it myself. I take a tricyclic anti depressant called Amitriptyline which has muscle relaxing properties as well as suppressing OCD thoughts. Perhaps this would be more suitable for your daughter but I am not medically qualified so I would advise that a visit to her Doctor might be beneficial.
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