TexasTom 726 Report post Posted January 4, 2017 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). 1 Share this post Link to post Share on other sites
MurrayPD2 224 Report post Posted January 4, 2017 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? Share this post Link to post Share on other sites
TexasTom 726 Report post Posted January 5, 2017 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. Share this post Link to post Share on other sites
DBS Mike 0 Report post Posted October 13, 2017 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. Share this post Link to post Share on other sites
RNwithPD 169 Report post Posted October 14, 2017 (edited) 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.) Kevin Edited October 14, 2017 by RNwithPD Share this post Link to post Share on other sites
waruna01 57 Report post Posted October 15, 2017 I would ask dr okun in this forum Share this post Link to post Share on other sites
rodriguezsmith 0 Report post Posted October 17, 2017 Really liked the post here Share this post Link to post Share on other sites
