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Having fun with DBS & Blood Pressure

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Getting ready for my MDS appointment for programming session this morning.


I was reviewing my notes last night on non-movement issues, and realized I have had ZERO

tremor on the left side. None.  I had forgotten my 6pm Sinemet, so at 8pm it had been six hours.

I was feeling great, some tremor on right side.


So like any good Engineer making notes and writing up current status, I turned off my DBS.

Nothing immediate happened. Hmm, maybe this is the honeymoon period? My right hand started

up with a pretty good tremor, but I can manage this. I started feeling really flush, which I hadn't noticed

in some time those fluctuation.   I had my BP cuff, took my blood pressure. 159/98.   Oh crud.


No voice, wasn't able to yell for my wife. My faithful Golden Retriever was outside, so I couldn't get her

to help by "get Mom".  Starting perspiring and really shaking pretty bad by the time I got my DBS

turned back on. I really had no clue it would affect me like that!


Took a few minutes to get the remote and turn myself back on. My wife took one look at me and

realized I couldn't get out of the chair. Took about 15 minutes to get back to normal.  BP had

settled back down to 110/70.   Whew!


At least for my notes "DBS controls my Blood Pressure"  I've never seen that mentioned anywhere,

but I seem to have more Autonomic dysfunction than other PWP's.


Other thing noted: Bowel Movement seems to be more regular. 


I really thought DBS would only affect movement (tremor, freezing) so seems odd to note the

non-movement issues it helped.  I am also out in the workshop, currently doing a wood working

project. I really need a Table Saw as leaning over and ripping sheets of plywood with a circular

saw is not a good thing to do (Solo work).

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Wow!  That sounds a little scary.  It is good to know the DBS is helping already, but it sounds like you are dependent on it.  What did the MDS say?

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My MDS thinks my notes are great!


I thought it would be instant reaction when I turned off my DBS, but it varies for everyone. For some people it is instant, for others up to an hour later to see a difference in tremor.


My MDS has seen other PwP's whose blood pressure varies like that, so wasn't surprised at all. If anything it is good to know so if I do have to turn off my DBS (MRI or EKG testing) it is  good to know what to expect.

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Has anyone experienced Carotid Artery pain?  I've had DBS going on ten years, and I have occasionally experienced pain, exactly where the wires cross over my Carotid Artery

on both sides.  This has been going on for about the last 3-4 months.

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The carotid artery is pretty deep, and the wires are just under the skin. I would think it could possibly be a broken or damaged wire leaking some current at that location, but it seems unlikely that it would happen in the same location on both sides of your neck at the same time. But then again, anything is possible. Has your blood pressure been okay?  BTW...I would venture to guess that the reason your BP went up when you turned off your stimulator has to do with sudden dystonia or tightening of your muscles which constricts your blood vessels thereby increasing your BP. (Disregard...I just realized that you are not the original poster.)


Edited by RNwithPD

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