YAY – I GOT MY NEUROSTIMULATOR TURNED UP!

Hi, all! So today (this AM) I met my Medtronic representative at a Starbucks 20mins away from my house and had her turn up my neurostimulator's parameters to 3.0m/a's.  I talked with my neurologist yesterday, and she agreed to let me have this done—but she had to check with Dr. Martijn Figee @ Mt. Sinai hospital in NYC to see if it would be appropriate. (Given that we're following HIS "Dutch" protocol.) He agreed and gave the green light. So I just had it turned up 2hrs ago. Immediately I felt an increase in energy and motivation. I am a little bit hypermanic – but it's welcome compared to how I was feeling before having this done. 

I feel SO much better—it's amazing! This technology is so crazy and fascinating to me. How by the switch of a button and some extra "juice"—how I can feel immediate relief. 

Anyways, keep me in your thoughts & prayers, please! I hope I'll be able to fall asleep at this higher amplitude setting. That would suck if I have trouble sleeping again. I have my appt up at University of WA in 10 days from now—so I'll be able to talk with my team and doctors about my progress and sleep, then. 

 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

AKATHISIA RESOURCE: 

https://akathisiaalliance.org/

Friends,

Here is a good resource for more information regarding the medical condition of Akathisia. 

Here you will find good up-to-date information re/ this condition, how to seek proper care, and more info!

For those that are suffering – I'm sorry. I know what it's like. PLEASE seek help immediately if you are experiencing withdrawal symptoms from SSRI's or Benzodiazepines! Akathisia can be a very dangerous and even deadly condition! 

MY POST-NEUROSTIMULATOR TURN-ON RESULTS... PLUS BIG NEWS!

Hey, everyone! 

So I wanted to make an update on my results from my DBS procedure this Jan/Feb. Overall, my results have been EXTRAORDINARY. For the most part 90% of my OCD, Anxiety, Panic Disorder, Depression, Suicidality, & motivation issues are GONE! It's been miraculous! I feel like a brand new person and feel as though I've been reborn. 

There's been a few hiccups along the way. For 5-6 days after having my neurostimulator turned on I had A LOT of trouble sleeping. Meaning I would be up for 2-3 days on end not able to fall asleep. So my psychiatrists worked with me in coming up with a medication regimen that has helped me to sleep – as well as having a Medtronic representative come to my apartment and lower the amplitude settings on my neurostimulator to 2.5 m/a bilaterally. This helped enormously w/ my sleep and lessened my hyperactivity I was experiencing after turn-on and has helped calm me down a bit. 

Two days ago, my psychiatrist up at UW told me that he wanted me to stop taking my stimulant in the AM in order to help with my not sleeping. I was taking 10mg of Adderall short-acting daily for the past 5yrs. Stopping this cold turkey was a HUGE mistake – and I ended up developing SEVERE akathisia – which was GOD AWFUL AND MISERABLE. I finally had to take a Adderall in the afternoon to combat the akathisia – and thankfully 30-40mins after I did this I calmed back down and became normal again. 

So I had an appt with my Neurologist today and explained that to her, and also had an appt w/ my other psychiatrist down here in Portland – and we came up with a game plan to stay on the Dutch protocol – meaning staying at a steady dose of stimulation for one month + also continuing to stay on my Adderall IR in the meantime to not make things more complicated and hard to track. Also to help me not have akathisia. 

(I will do a write up about what Akathisia is here in the next few days. It's an AWFUL medical condition!) 

Overall, I'm feeling excellent! I did have a panic attack last night and that continued on this AM. This was in part because I mustered up the cojones to ask a girl out – and I started getting intrusive thoughts re/ our date plans, what my appearance would look like, how I would appear to her, if she'd like me, if I'd look like I do in my photos to her in-person, etc. So that was a bit disappointing to know that I can STILL have panic attacks. I suppose going 2 weeks w/o one kind of made me feel invincible – like I was untouchable. It was a humbling and learning experience finding out that I A, am still beating this disorder, and B, that it's still a fight every day. The girl I met is SO sweet! I talked to her on the phone this evening – and she was so accepting of my struggles/psych issues – it was just so refreshing. As in the past, I've been "ghosted" for revealing what I struggle w/. She was compassionate – and even opened up to me about some psychiatric disorders she's dealt with/deals with. 

Friends, please continue praying for me! I can use all the prayer I can get. Things are still working their way in my brain – and my brain is still getting use to the 24/7 stimulation. It will take time for my brain to adjust and find the "right" settings. This could take 5-6 months. So please pray that my doctors are able to use their knowledge and skills to best treat me, and that God will help heal me of my struggles. Also pray that things work out with this girl I'm talking to! (She is SO cool – and we really hit it off. I have GOOD feelings about it...)

Okay, thanks for reading, everyone!

Have a great weekend! 

– Mitch  

WHAT THE DBS IMPLANTS/LEADS LOOK LIKE:

This is what the Medtronic DBS neurostimulator looks like: ↓

(This is the EXACT one I have in my chest).

These are what the leads in my brain look like: ↓

This is what the connector for the wires from the leads to the neurostimulator looks like. This is located behind my ear under my skin. ↓

And finally, this is what the skull hole plugs look like that protect the top of the leads and also plug the holes in your skull that your neurosurgeon will have drilled/cut. ↓