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TOPIC: DBS - Not tolerating the voltage - help!

DBS - Not tolerating the voltage - help! 2 years 2 months ago #3770

  • Katy
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I hope someone can help.
I had DBS 8 weeks ago, the battery was programmed 4 weeks ago and they started at 1 volt on each side as when the doc tried higher, my head started throwing itself backwards and forwards. 1 volt was fine, i was told to up it .10 every 5 days... so i've got as far at 1.5 and the last time I upped it my right arm and leg hurt loads and I had pins and needles in my right hand. I was advised to put that side back down again, then to try and up it in a week - if I have problems again then I will have have reached my tolerated level for that side.
This worries me as i've not reached a level that helps my symptoms yet! :side:
So what can they do if my body won't tolerate it?
I'm so new to this that I don't fully understand.... :(
Can they program it in a different way to help better?

Any advice would be appreciated, thank you! :)
Last Edit: 2 years 2 months ago by Katy.
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DBS - Not tolerating the voltage - help! 2 years 2 weeks ago #3805

  • Anke
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Hi Katy, I also had trouble when the voltage was raised too quickly. My neurologist/programmer then set my handheld in such a way that I could raise stimulation in 0.05v steps, which I did very gradually (sometimes just once every 3 weeks). But I believe it is even possible to have it set at 0.01v. Anyway, I did wind up having great results, but it took a while. Also, in your case when they first turned on the stimulation, did they check all contact points to see which one gave the least side effects? They did with me, and some of them were definitely more problematic. They then picked the ones on which I was able to tolerate the highest stimulation and built on that. I had DBS in July 2013 with an eventual 85-90% improvement, so even with a slow start it can work very well. Wishing you great progress also!
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DBS - Not tolerating the voltage - help! 10 months 1 week ago #4135

  • KeithS
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As someone considering DBS surgery, I'm interested in your progress Anke/Katy. How are things for you both now?
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