I've been struggling...

Hello, friends!

So I've been struggling a lot lately. Since having my neurostimulator turned down to 2.5m/a's – I have been struggling with increased anxiety, OCD symptoms, several panic attacks, depression, thoughts of hopelessness, and a some intrusive suicidal ideation... For a while I was doing really well on 2.5m/a's. The reason we decreased from 3.5m/a's to 2.5m/a's is because I was having immense trouble sleeping at the higher parameters. I went like 2-3 days w/o sleep several times. My psychiatrists have put me on new medications for sleep that work GREAT! And I think turning the neurostimulator down to 2.5m/a's has helped with the sleep as well. When I was at 3.5m/a's – I was feeling ON TOP of the world. I felt like I was cured and felt so happy. But now being on the lower amplitude setting on my neurostimulator for 2.5 weeks now – I'm having increased symptoms of my anxiety, OCD, and Panic Disorder. It's so frustrating... Because for the first 2 weeks after my neurostimulator turn-on I was feeling AMAZING... Like I was on top of the world. It's so annoying and uncomfortable that I am having increased anxiety, OCD symptoms, & panic attacks now – and also that I am experiencing akathisia-like symptoms from my neurostimulator being turned down lower to a lower amplitude. I did a post about an akathisia episode that occured last week a few days ago (scroll down to see the write-up/resource). I am SO freakin' sick of dealing with medication withdrawal and akathisia. It's a horrific condition. I feel so uncomfortable and jittery/uneasy during the day – with almost this sense of impending doom looming in my mind. (The "impending doom" being a panic attack/OCD intrusive thought spiral). I'm so sick of battling my own brain! It's exhausting – as those of you with OCD/Anxiety know.


I have done a few new things – "new experiences" recently that have caused me to have severe anxiety and panic disorder experiences. These experiences were me getting a tattoo – and also going over to a girl's house whom I have been talking to for several weeks to hang out. Unfortunately, during the latter half of these activities I ended up experiencing SEVERE anxiety and panic attacks. Though I had the panic attacks – I am still glad that I got to experience these things. I love my new tattoo – and the girl I'm talking with and met last night is AMAZING – and it was SO GREAT to meet her in person. Even though I had to dip out of there only after an hour. I fear I have over-exerted myself these past few weeks (getting the tattoo by myself, signing up for a dating app and talking to this girl and pursuing a relationship). I know deep down that I need to focus on myself during this time and focus on healing and recovering from my procedure and illnesses…

I have an appointment up at UW on 4/7/23 with my neurologist and psychiatrist to have my stimulator adjusted. I'm not looking forward to having to wait 1 and a ½ more weeks until my appointment. I wish that my Medtronic rep down here in PDX could come and raise my stimulator to 3.0m/a's (an in-between) and see if that would help me. I so badly want to be able to take this girl on a proper date and be able to hang out with her and see her w/o getting so much anxiety and worrying about having panic attacks – and actually ending up having panic attacks. I'm tired of feeling like crap again and not having any motivation to do much all day. I want to get back to feeling "high" on life and get that zest back that I had initially when my neurostimulator was turned on.
I'm hoping that my neurologist and psychiatrist can come up with a good game plan that will get me feeling better ASAP! I sent my neurologist a message via MyChart and asked some Q's and also asked if perhaps my Medtronic representative could come over to my house to turn-up my stimulator to 3.0m/a's... But I'm doubting that Dr. Lin will agree to this – given that I'll be seeing her in only 11 days from now. (Cross your fingers that she'll agree to it!) I'm not looking forward to going up to Seattle. Well, I am and I'm not – at the same time. I always get anxiety pre-going up there for an appt. It's not that I've ever had a bad experience... I always have a great time with my Mom and staying at her friend's house just north of the hospital. It's just that I get anxiety being in the hospital a little bit – and also I NEVER sleep good when we stay at her friend's house. I never have – ever! I always end up being awake the whole night. I don't know why this is – it's not because of anxiety or that I'm uncomfortable... The bed is comfy, my Mom's friend's house is SUPER nice and her friend is FANTASTIC... I suppose I always just have a lot on my mind the night prior to the appointments – so that's what keeps me up. But I'm hoping now that I'm on a new sleeping medication – that I will be able to sleep the night prior to my appointment. Well, we're actually going up the day-of my appt and staying the night and then leaving on Saturday AM the next day. (As to avoid the HORRENDOUS Seattle/Tacoma traffic).

Anyways, as always, my friends – PLEASE keep me in your thoughts and prayers! I can use all the good vibes, prayers, and good juju possible. I know that recovery isn't linear and that progress isn't linear. I know that my DBS will take possibly several months of fine-tuning in order to get me in a stable condition/place. I knew that DBS wasn't a cure-all when I went ahead with all this... It's just hard after feeling SO good for a while then to have that taken away from you, almost like a drug – that it's just depressing and sad for me to feel and think about.

Anyways, I hope all of you all are doing well! As always, if anyone has questions re/ DBS or OCD (or any related questions) – feel free to message me here on my blog, comment down below, OR send me a DM on Facebook.

Thanks for reading – and thanks to those of you who have been my constant sources of support – I love you all!



– Mitch