April 7, 2023

NUEROSTIMULATOR PROGRAMMING APPT UPDATE



So yesterday I drove up to Seattle for my appt at UW for my neurostimulator programming appointment with my neurologist + several other doctors. I had to make the trip up to Seattle all by myself (solo) because my mother had gotten violently ill the night before last–and my father works 24/hr shifts (he's a firefighter). I felt confident that I could make the trip on my own since I've done it so many times now with my Mom. Well about 2/3rd's of the way there I suffered a SEVERE acute panic attack. I don't know what exactly spawned it–but I was thinking about so many different OCD thoughts, worrying about so many things, doubting things, etc. Luckily I was able to make it to our friend's house in Seattle where I ran inside and just hung out in their spare room and just chilled out for a few hours. They ended up leaving for California at 5PM–so I had the entire house to myself. It was at that point where I broke down crying (now that I had privacy) and continued suffering w/ the panic attack for several more hours. I started getting SI–so that's when my Mom told me that I needed to raise the parameters on my DBS stimulator so that my panic attack would stop. So I did do that–I raised the parameters from 2.5mA's to 3.0mA's... Immediately my panic attack stopped, I stopped crying, and I felt better. I finally was able to feel "good" enough to order takeout from the Greek restaurant down the street that me and my Mom always go to when we're up here and I ate my dinner. Later on in the night my OCD thoughts started coming on full force again–so I decided to just take my nighttime pills and turn my neurostimulator back down to 2.5mA's. (I can't sleep w/ it at 3.0mA's–insomnia). Luckily I fell asleep fast and was able to get 6-7hrs of solid sleep. 

I woke up feeling still anxious–and having PTSD from my panic attack the evening prior. I was feeling okay enough to go to Starbuck's and get myself a Chai Tea Latte and slice of pound cake and fill up the car with gas. 2hrs later I left for University of Washington for my appt. 
I made it to my appt fast and smoothly–I found a parking spot and made it to the Neurology clinic pretty quickly. I waited only 15mins (even though I got there 35mins early) before a PA took me back and took my vitals, confirmed meds, etc. The guy was really cool/friendly. 5mins later my neurologist, a neurophysicist, a medical resident, my Medtronic representative, and a movement disorder specialist (he was there because he was intrigued by the use of DBS for OCD and wanted to observe for fun).
My team ran a bunch of tests on my device and then we came up with a new protocol for my DBS stimulator. Dr. Lin (my neurologist) decided to put my RIGHT lead on 3.8mA's and leave my LEFT lead at 2.5mA's. She said the rationale was because my right side lead seems to affect my mood, temperament, and anxiety more so than my left. After they adjusted me I felt great–I still feel great. Dr. Lin added two groups to my therapy for sleep and for the 2.5 setting that I was on prior. She instructed me to AT NIGHT go down to the sleep group (which is RIGHT lead on @ 3.5mA's–LEFT lead OFF) if I am having trouble sleeping at the new parameters. She also said if I still don't get sleep at that group, to then go lower to the 2.5mA's setting that I was at prior to my appt today. (Which I sleep fine at). 

Overall I'm feeling good now. I just hope the good feelings and results will last. (FINGERS CROSSED). I was able to drive back down to Portland just fine–and made it home relatively quickly–given the traffic–so that was relieving! I really hope that my OCD and anxiety/panic attacks subside now that I've been readjusted. I've been in a rut for a while now–so it would be nice to start doing things again–playing guitar/writing music, making YouTube videos and blog posts here, going out on more dates with the girl that I'm seeing, being more productive around the house, being able to get some exercise and start eating healthier, etcetera.

It's been a LONG journey getting to this point. 5 years to be exact. I don't know what God's purpose for my suffering is–but I trust his plan for me. I've found comfort in this Bible verse– Jeremiah 29:11 - "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future".


Anyways, my friends–please keep me in your prayers and continue to send good vibes my way! God knows I can use the prayers & well-wishes. I'm hoping my life will start to look up soon and that I can become more normal here soon!

Thanks for reading! 


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