I AM CURED? AUGUST/SEPTEMBER VIDEO VLOG UPDATE!

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August/September update:

Hello, everyone! I am SO sorry for not updating this blog in so long. It's been an extremely rough past few months and I've just been too depressed and sad to get on here and write anything. 
Back in June I was doing GREAT! I was feeling amazing and had little OCD/anxiety/and panic symptoms. Then I got super sick with COVID and I took a nosedive and just reverted back to having horrible symptoms. My nuerologist said that when Parkinson's patients w/ DBS get ill with a virus or get infections that their neurological symptoms can start to come back and get worse again. So that was her rationale for me relapsing. Unfortunately I didn't get any better until just yesterday when I had my most recent DBS programming appointment up at UW. 
At this appointment, my neurologist and team decided to put me back on the Dutch protocol for DBS. (I was happy about this–and wanted them to put me back on this protocol.) Immediately after they changed my settings I felt amazing! I felt cured, almost. I was having ZERO OCD intrusive thoughts, no anxiety, my depression lifted, my motivation shot up, my energy level boosted to the max. 
My team decided to put my DBS program on a cycle or "cycling" group. Meaning that my DBS stimulation would turn OFF at 10PM and ON again at 9AM. They did this so that I hopefully wouldn't get hyper manic again and have insomnia from being over-stimulated. Well after me and my Mom left UW, we drove south to Tacoma for 1hr and stopped to get McDonald's breakfast. Right at 10AM I suddenly had a severe panic attack with millions of intrusive OCD thoughts bombarding me, worries about things, doubting things, needing to check, needing to get reassurance, etc. 
This lasted for 30mins until I opened my DBS app on my Medtronic phone and went in and changed the DBS parameters from the "cycling" group to the "constant" group. The constant group was the exact same settings as the cycling group–just with the difference of it being constant stimulation. Which requires me turning it OFF at night and ON in the AM. Whereas the cycling group turns on and off on a schedule. What I think happened is that my Medtronic rep and Neurologist accidentally programmed the time for the cycling group from 10PM to 10AM–and NOT 22:00hrs (10PM). This would make sense as to why suddenly at 10AM sharp that I started having symptoms reappear and a panic attack spawn. I talked with my neurologist and she said that she didn't think this was possible, because the Medtronic device only cycles with hours, and not like an alarm or at a set time. So it's just set to turn on for 13hrs and off for 11hrs. She said she was going to talk with my Medtronic representative and see if there was a glitch in the system or if something could have gotten messed up on their end. I'm waiting to hear back from her. 
So two days out I'm feeling great. I am weary about the effects of these new DBS parameters lasting. I have the WORST luck of anyone you know. Especially when it comes to my health, I am just praying  to God that these amazing effects last. Please keep me in your thoughts and prayers, too, my friends!
My team informed me that they are doing a case study on me and are going to write up a study for a peer-reviewed medical journal that they are hoping gets published. That's kind of cool, isn't it?

Anyways! So that's an update on how I've been doing. TLDR; I was doing HORRIBLE for months, until my most recent DBS settings adjustment appointment on 9/06/24 where they put me back on the Dutch protocol and higher mA settings; and now I am doing and feeling amazing!

June/July Update

Hi, everyone!

Sorry for not updating this blog in a while. I have been through quite a lot over the past few months... After my last neurostimulator adjustment appt in May, I was doing AMAZING for a period of about 3 weeks. My OCD symptoms were very minimal and I only had one or two panic attacks the entire time. I was feeling very good! After about three weeks, I got very sick with a horrible cold/flu. This flu lasted for about 5-6 days and it was awful! Weirdly, once I got over my cold–my OCD symptoms and panic attacks came back FULL force. I started having all-day long intrusive thoughts, many rituals and compulsions, and repeat panic attacks and awful generalized anxiety. My Tourette's also became HORRIBLE after this cold, too. For about 3-4 weeks after my cold I was doing awful. I was MISERABLE. I was having 3-4 panic attacks a week, daily severe anxiety, awful tics, and so many OCD symptoms. After about 4 weeks I ended up turning down my stimulation parameters back down to the 4.0mA Dutch protocol parameters. I did this because my Tourette's was so bad and because my tics were causing me so much distress. My tics didn't get better, unfortunately. So my psychiatrist said I could take an addt'l 5mg of Haldol for my severe tics. 

Yesterday on Wednesday I had my most recent DBS parameter appointment. At my appt I checked in w/ my neurologist and neurophysicist and they ended up putting me back on May's parameters–with the slight change of amplitude (which they lowered). They are hoping that this change helps my tics and that my OCD symptoms and anxiety will get better again. The reason I mentioned me having the cold/flu was because my neurologist told me that with movement disorders and Tourette's (and OCD, also), that if you have a severe infection or temporary illness–that your neurological conditions can worsen and symptoms can reoccur. She said that this should be only temporary and that in a few more weeks + next months that my body should settle into the new DBS parameters and that my body should revert back to how it was. 

I'm really hoping that these new settings work and that I will start to experience less OCD symptoms, Tourette's symptoms, and less anxiety and fewer panic attacks. I am feeling fine today after my appt yesterday. My Tourette's unfortunately is no better today than it was yesterday. I am SO beyond tired of dealing with all my mental illnesses and these damn panic attacks and OCD that are so disabling. I'm ready to start living my life and doing things like reentering the workforce, dating, living on my own, traveling, etc. Right now I'm just in survival mode. I HATE taking all of my medications–because I'm on so many sedating ones. That's part of the reason why I have no motivation or energy to do anything. I'm practically still couch-bound all day every day. It's a miserable life... But I am blessed in certain other ways. So I try to remain hopeful. 

MAY UPDATE!

Hi, everyone! 

So firstly, I'm sorry for not updating this blog for the past 5 months. Things have been extremely tough for me, and it's just been a nightmare dealing with it all. Now, thankfully, I am in a better place... So I wanted to update my blog and let you know how I'm doing now. 

January, February, and March of this year were HORRIFIC! In January, my OCD and panic attacks were horrible. I spent the month having to stop doing things I enjoyed (like my guitar lessons) and really just embrace being disabled. 

In February, I intentionally overdosed–and ended up in the hospital for 3 days due to my suicide attempt. I OD'd on Benzo's and almost had to be intubated. It was a mess. I was a mess. I came home after the 3 days and then subsequently suffered from SEVERE Benzodiazepine withdrawal syndrome for the next month. My withdrawals were horrible. I was ordered off of my Xanax by my psychiatrist, and she also stopped my antidepressant as well (which I also OD'd on). It turns out I was extremely dependant on the Xanax. Not having it for the whole month of February and March was awful and so hard. My withdrawal symptoms were horrific. I was having extreme akathisia and restlessness, hot flashes, uneasy feelings in my body, HORRIBLE OCD symptoms and severe panic attacks almost every day. Thankfully I was able to overcome the Benzo withdrawals and become healthy again. 

In April/May I had a really tough time with increased panic attacks and horrible OCD and depression. It was not a good time for me, and I was extremely suicidal as well during this time. I had two neurostimulator adjustment appointments over the past 5 months–but none of the new settings were working for me. 

This past Friday I had my most recent DBS adjustment appointment. This appointment went GREAT, and the new settings they put me at have seemed to really help me. Over the past 4 days since, I've had hardly any OCD thoughts, and I've had ZERO anxiety and panic attacks. I'm so hopeful that maybe these settings are the right ones. I'm a bit hesitant, though–as my OCD/Anxiety always seems to come back and roar up again after it's been better for a while. I'm cautiously optimistic about my future now. I REALLY hope that my OCD and panic attacks will be better so I can finally start working again, start dating again, and start getting the motivation to do things I love again–like playing guitar and recording music.

Anyways, that's how I've been doing over the past 5 months. Sorry again for being so quiet on this blog. I've been meaning to update you all and make another YouTube video update again–but I've just lacked the motivation. 

Thanks for reading, and like always if you have any questions about DBS for OCD feel free to leave a comment below or write me an email. I love being able to share my journey and help others who are in the same miserable boat as me. 

December/January Update:

Hi, everyone! Sorry for not posting for so long. Life just kinda got in the way. 

In terms of how I'm doing... I'm doing very meh. There's not been much improvement w/ my lack of motivation and laziness/depression. I'm still struggling every day to do the things I need to do; like showering, brushing my teeth, spending time not being horizontal on the couch–unlike how I am now spending 22-23hrs out of my day horizontal while laying on the couch on my cell phone. 

My last appt up at UW in Seattle, we ditched the Dutch protocol that Dr. Martijn Figee at Mt. Sinai in NYC prescribed for me and that my team of doctors were following. My neurologist instead put me on a Parkinson's patient protocol which is different in certain ways. At first I felt better. But over the coming weeks in December and into January I started to become super hyperactive and manic. So that was NOT pleasant and we needed to remedy it immediately, So I just the other week switched back down to my November settings/parameters of 4.2mA's. 

Tomorrow morning at 9:30AM I have my NEXT neurostimulator adjustment appointment at UW. I am already settled into our friend's house for the evening here now and am ready to get to my appt tomorrow AM and get it over with. I am REALLY hoping that this appt will be the one where we get me put on the right parameters and settings. It's almost been a year now since my initial neurostimulator turn on... And the one year mark will help my team of doctors see if they think this DBS procedure has been helpful and beneficial for my OCD. I think in some aspects my OCD is much better. But in terms of the most disturbing and disabling aspects of my OCD–like my intrusive thoughts, fear of having panic attacks, and having generalized anxiety and PTSD... I think there's a lot of room for improvement, 

It's weird to think that a year ago this month I got my surgery performed. Time sure does fly! 

I am about to start an IOP program at a behavioral health center at my local hospital starting next week. I'm not super stoked about it... But my therapist really has pushed for me to do it and my parents think it could be worth a shot. Luckily it's only 3 days out of the week for 3hrs a day. I am of course super worried about having panic attacks while I'm there and away from home... But the 3hrs 3x a week seems decently manageable. If anything, it will give me structure during my day and a chunk of time where I can be off of my cell phone. 

Anyways... That's what's up with me. I'm still very much depressed and hopeless and am completely unmotivated to do ANYTHING whatsoever. Things I use to enjoy doing like playing guitar, recording music, and listening to music now feel impossible for me to do. I just have zero energy all the time. Part of me thinks it's all the psych meds that I'm on. I'm on like 5 sedating medications and am also on uppers, too. So no wonder I am sedated and tired all day long! I want to ask my psychiatrist if I can ween off most of my medications... But I am doubtful that he will agree to it. For my DBS and for the study they're doing on me–they want to keep the variables the same. Which I understand completely... But it's like; at what point do I do what's best for MY health and wellbeing. I know that getting off of some of these really potent meds would help my mood and feeling of being tired all day long/having no energy. 

Well, we shall see how tomorrow's appt goes. I will keep you guys' updated on my progress and symptoms with another blog post update later this January or in February.

A Long Overdue Update... Plus My Recent Realization That I Have Agoraphobia.

Hey, everyone!

I'm sorry I haven't paid attention to my blog over the past few months... It's been a wild ride! 

So back in June I posted my last update–a video update. I then had my next neurostimulator adjustment appt in Seattle at UW on July 7th. I went to that appointment, and it went well. They decided to take my DBS's parameters (3.8mA's) and make the duration of the pulsation and stimulation longer. After I got back from that appointment, I felt fine for 4-5 days. But then suddenly I starting having SUPER severe anxiety that was lasting all-day-long in my body and my mind. I was SOOO anxious and was struggling so much about worrying about having a panic attack and having intrusive thoughts. So after struggling with this for about a week or so, I contacted my neurologist and she gave me permission to change my parameters back down to 3.8mA's w/o the longer duration pulsations. 
I immediately felt better, and for the rest of July/early August I was doing okay. I have though, been struggling with SEVERE motivation issues. I have been struggling with this for a long time. All I do during the day (since I can't work or attend school) is lay on my iPhone on the couch all day long watching these specific stupid/mindless videos. I cannot force myself to do ANYTHING else. I literally have something deep in my psyche that is preventing me from doing things like playing guitar/writing music or practicing my Spanish language on my Babble program. 
It's AWFUL. I hate living life this way... So purposelessly and without any joy. 

I HATE my current lifestyle so much. Being sedentary all day long, not having a purpose, not doing my hobbies that use to bring me joy. I always tell people; "I'd rather be flipping burgers for minimum wage for 8hrs a day–40hrs a week" rather than be doing what I'm doing now. While it may sound like a vacation or sweet life for some, I can assure you that it is INDEED a life of misery and torture. 
I just had my latest neurostimulator adjustment appt the other week. My team DID NOT end up adjusting anything or changing any of my parameters. My neurologist administered a YBOC test and my score was 27/40. This being -11 points down from my pre-op YBOC of 38/40. So she said that we should remain positive because my DBS IS working for my OCD. And overall my anxiety has been better. And also, I went 70+ days without a panic attack. So all that is great news. It's just been this motivation issue and severe depression that I need to work on and that I've been struggling with lately. 

I got a stern talking-to by my psychiatrist up at the appointment with him saying I need to take baby steps and actually work on confronting my anxieties and OCD triggers–like my therapist tells me. He said that I must stop doing my daily routine, get out of the house, and start doing some productive things. He's ultimately right... Me and my Mom agreed w/ him and so did the rest of my team. 

What's hard for me is now I realize I struggle with SEVERE agoraphobia. I never knew it was this bad... I use to just earlier this year go to the store, go out to eat, go to music stores, etc. But over the past 2-3months I've been avoiding doing these things like the plague–instead opting to stay at home on my couch/bed in my "safety zone". Just yesterday, my family and I took our dogs to the beach. We hadn't been in a long time, and it was important that we take my 12yr old dog Zoey to the beach for the last time, because she was recently diagnosed with nasal cancer–and only likely has a few more months to live. So we planned a trip and went. I was EXTREMELY nervous about going. My anxiety was high and my agoraphobia was SO BAD. I knew I was going to have a panic attack either in the car or on the beach... And that's what ended up happening. I had a MASSIVE emotional breakdown at the beach after being able to manage being there for about and hour and a half. I was BAWLING my eyes out, was having SO many intrusive thoughts, was having worried thoughts, was seeing disturbing images, was hearing voices telling me to commit suicide, etc. It ended up lasting for so long that my family had to scrap our plans of going into the beach town afterwards and having a nice dinner– and just pack up quickly and leave to go back home early. My crying lasted like 3hrs and once I got home I was a mess until I just took my sleeping pills and went to sleep. I was so upset that I ruined my family's plans for the day and that I made us have to come home early.

But it was VERY eye opening to see just how agoraphobic I've become, and how reliant on my routine I am. 

So overall, while some things are better–A lot of things are coming up and acting up again and causing me major difficulty. My depression has been horrific, and my relying on my comfort zone is terrible. I told my parents that I don't ever want to leave the house again. And while I know that's not a possibility, I did mean it when I said it. I really don't feel like I can leave the house again anytime soon. And if I did leave the house, it would have to be with someone I trust most, like my Mother. 

Anyways, friends! There's my update. Please if you wouldn't mind, say a prayer for me and ask God to relieve me of my agoraphobia and severe depression. Please pray that I stay safe and don't decide to do something that I can't take back. I'm in much grief–and spend most days sulking in all the grief I have over the previous 5-lost years of my life due to my disablement and severe mental health disorders. 

I just want to be normal again, whatever that means. To just get rid of this stuff forever and be able to be a functioning adult who can work, buy a home, have a girlfriend, get married, have a family, etc. When I look at my life now, all I want to do is end it. That's how severely I feel about my conditions. 

This is cool/kinda freaky... My DBS X-Rays

Hey, everyone! Here are my X-rays of my skull post the lead implantation surgery–aka surgery #1. 

This X-ray was done the morning after my first surgery–the lead implantation surgery. 

You can see the two electrodes running straight down into my brain... And the excess wires coiled at the top of my brain that would later (during my 2nd surgery the next week) be uncoiled and ran down the side of my right neck into my neurostiumulator that is implanted above my right breast. 

[See below]

Post-Neurostimulator Adjustment Appt Update:

Hi, everyone! So back on Friday I got back from Seattle from my appt up at UW for my neurostimulator adjustment and programming. To say that this appointment was difficult was an understatement. For starters, my team/doctors DID NOT oblige my request for me to have more control over my parameters and amplitude. They were adamant about following Dr. Figee's/the Dutch protocol–which states that I must be at one singular setting for a 4-week period of time. My team ended up putting me at 3.5mA's from 3.0mA's... But they did some additional settings and parameters for each side that made it DIFFERENT than just setting the parameters to 3.5mA's bilaterally. So unfortunately, I did not feel the increase and boost in motivation and energy like I normally do when they increase my stimulation. So far 3 days out I'm doing meh/okay. My anxiety has been a bit better but I've been really tired lately and I still struggled with anxiety yesterday (Monday) when I had to go to my dentist appointment. I am still laying on the couch 24/7–I have no increase in energy levels or motivation... So that's super disappointing. I was hoping my energy levels would increase and that my motivation would increase, too. You know, so I can get off this damn couch and actually DO stuff! Do stuff like go to the store, go out to my family's farm and play fetch with my dog and take him for a walk, play music and write and record music again, start doing guitar lessons again, actually be able to stay at my apartment by myself and get out of my parent's house...

I got a lecture from my psychiatrist who told me that I need to be doing more to combat my anxiety. By doing things that make me uncomfortable, by doing exposure therapy, by changing my routine, getting exercise, etc. He and the new doctor that was there during the appt–she was a clinical practicing psychologist for Medtronic both recommended to me that I find a new therapist who can do intense ERP therapy for me and my OCD. That was scary to me, as I love my therapist now and really connect and feel comfortable with her–yet I do agree that perhaps we're not doing deep enough/heavy enough CBT and ERP therapy. They wanted me to find a therapist who will give me homework every week and will check in with me weekly to make sure I'm doing exposure therapy and combating my anxiety and anxious thoughts. My Mom said I can still stay seeing my current therapist now as an adjunct therapist–which I'm so glad about. But that I need to find someone who's more specialized in OCD. 

Dr. Schrift (my psychiatrist) said that there's room to increase my Propranolol for my anxiety. But that he wanted to wait a couple of weeks to see how I do on the new parameters.

On the way out of my appt on Friday I suffered an EXTREME panic attack. I was suffering from one while I was in the appointment... But I was able to hold in my emotions and get through the appointment and do what I needed to do to sit through the testing and all. But as soon as I left and used the restroom after my appt I started getting SEVERE contamination OCD regarding the toilet seat and bathroom. It was then after exiting the bathroom that I started to break down crying in the middle of the clinic. Luckily I had my Mom with me and we were able to quickly exit the hospital and head to the parking garage and car where I could break down and hysterically bawl in the car for 15mins before we left. For about 45mins leaving Seattle I was crying/bawling in the car. Man, it was so tough. 

Anyways, friends! If you all could please pray for me and pray that these new parameters start to help me soon and that I'll start to begin feeling good again. Please pray that I am able to start doing the normal things that I once was able to do before–and that I can start to FEEL GOOD and get off of the damn couch for once and start to do things like play music/record music, go to the store, go to concerts, walk my dog, do productive things, cook for myself, actually practice exposure therapy, etc... Please pray that I can be able to keep and stay at my apartment–and not have to live at home anymore. Please pray that my panic attacks lessen and not bother me–and that my anxiety levels will start to drop quickly. 

Thanks, everybody for all of the support!

I'VE REALLY BEEN STRUGGLING THESE PAST 4 WEEKS! 

Hey, all! So I've really been struggling these past 4 weeks since my last programming appt. I've been suffering from SEVERE anxiety 24/7 CONSTANT–all day long and also many panic attacks. This anxiety's been so crippling. All I've been able to do is lay on the couch all day long on my phone and just try to prevent the anxiety about the anxiety. My panic attacks have become more frequent again. I had a HORRIFIC panic attack last night (5/7/23). I was SOOOO suicidal. It was BAD. My parents almost took me to the emergency room. I was so ready to kill myself last night. I know that I still have hope with my DBS and the programming of it... But I just feel so hopeless right now. It's been 5-FREAKING YEARS of dealing with all this BULLSH*T! It's like, "c'mon, man (God)... When is this going to end?".

I'm hoping I can last 'til Friday when I have an appt up at UW in Seattle for my DBS programming. I'm hoping they can get me on some new settings that will prove to be effective and therapeutic for me. It's been hard, because literally for the past 4 weeks I've only spent like 4 days at my apartment. The rest of the days I've been living at my parent's. It's hard because I love my apartment and love having my own space. I want to be able to keep my apartment and not end the lease next month when it's up if I'm still struggling w/ anxiety and panic. I would feel like a TOTAL loser living at home at age 25yrs old. Plus that's not attractive to women AT ALL. (But it's not like I'm very attractive to begin with–with my situation and all). 

Anyways, please pray for me friends! Please pray that I find comfort and peace ASAP. Please pray that I don't choose to give up and that I choose to stay here on this earth. Please pray that my doctors and team can help me and that these new DBS parameters that I'll be receiving on Friday will be helpful and therapeutic for me. Also please pray that I maintain a relationship with God. My faith has been shaken immensely–and I'm starting to lose faith in God. Anyways, thanks everyone for the continued support and for all your prayers throughout this difficult process.

Much love! 

– Mitch