Hi, I’m 37 years. In 2008 years ago I’ve got a knee surgery and as a complication of both spinal and epidural anesthesia I got dystonia. At first it was not recognized, because I had attacks which they couldn’t explain. After a second opinion 1 year later I was diagnosed with multi focal and paroxysmal generalized dystonia. A genetic cause has not been found jet. Probably DYT 12 is in the picture, because it came within minutes to hours after the leakage of liquor.
In 2010 suddenly my dystonia worsened to a generalized form with the paroxysmal dystonia and was in hospital for 6 months, dependent on wheelchair and bed.
In between 2008 and 2010 already the neurologists tried several forms of medication. None were true capable of diminishing or let my dystonia disappear.
So the only way to do something about my disabling dystonia was to get a DBS.
I’m so happy I choose it, because I can walk normally again and enjoy my hobbies: scuba diving (with restrictions of course, but was already a Master Scuba Diver when I’ve got dystonia, so I knew what to do and what not to do: I’ll never take any risks if I’m feeling not well.
Only clonazepam is helpful now in a daily dose of 2mg (4 times 0,5 mg) and I can use clonazepam (Rivotril) in suspension form while having a dystonic attack (yes still having attacks but not every day anymore, but now and then).
Many triggers I already found out that are the cause of the attacks or sometimes even a bit worsening with walking (but with my DBS I’m able to adjust the DBS for dystonia problems).
Dormicum is not very helpful only short enough for paramedics to put an iv in my arm if they can find any vein (bad veins after several long lasting clonazepam infusions when I’ve got an dystonic status).
Today I’ve got Depakin 2 times 250 mg (actually 2 times 500mg, but I know I have to begin with half of the prescribed doses because of mostly serious side effects (always the rare ones with me, so extra carefulness is calculated) because of my progression of photo sensitivity (LED lights everywhere! It’s really a big deal about that).
I hope it will work also for the few attacks.
So I hope I can help anyone to get information in The Netherlands about neurologists/ hospitals specialized in dystonia and other movement disorders.
And if anyone have questions about DBS or my triggers, you are welcome to ask.
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