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 

I feel like a freak taking so much medication...

Above is a photo of my weekly pill container just after I filled it for the new week. 13 pills daily, nearly 100 pills per week. Man, I feel like a freak taking this much psychotropic medication. It's hard, because I'm dependant on it... I know I need to keep taking it in order to stay stable. But I just want nothing more than to be able to stop taking all of these. I hate feeling sedated all day long, I hate the side effects, I hate the akathisia I get if I forget to take a medication or accidentally miss a dose. I'm hoping with my DBS that once we get the parameters honed-in that I'll be able to stop taking some of my medication. That's my psychiatrist and neurologist's hope, too. If I can get down to just 3 or 4 medications–that would be GREAT! I've been on over 35+ different medications over the years... And I feel like I've been a lab rat taking all these different medications and doing trials of different meds + various med cocktails.

I'm not anti-medication, per se. I do think that psychiatric medication can be VERY helpful indeed. But in western medicine, psych drugs are way over-prescribed. Too many adults (AND CHILDREN) are on this crap. The side effects of these drugs are not well studied, and they can often end up causing dependency and addiction. That being said I do feel like SOME of my medication is helpful. For example, the benzos and the beta-blockers + my Tourette's medication. I just hope someday I can be semi-normal and not be on so much medication. It's so annoying having to stay on top of my medication refills and making sure I always have enough in stock, etc. 

Anyways, I have my next DBS programming appt on May 12th. So just about a week and a half away. I'm hoping that my team can get my DBS parameters honed-in and that I can start feeling even more relief. I'm feeling SO much better after lowering the dose of my Haldol last week and starting my new beta-blocker medication called Propranolol. I'm hoping that with the change in DBS parameters that I can be set-in-stone and start feeling all good again! 

My Journey With Tourette's Syndrome...

I was diagnosed w/ Tourette's Syndrome when I was 10yrs old. Growing up as a kid in elementary school I didn't really notice my tics. Though there was one distinct memory I have as a kid growing up in 5th grade at school in gym glass when a girl (who was a popular girl) asked why I was rolling my eyes. I remember feeling embarrassed during that moment. Fast forward to Middle School when my TS became very severe. Throughout all years of Middle School my TS was awful. But specifically in the 7th grade my TS got extremely severe. I developed tics where I would swallow and "gulp" air which would cause me severe GI issues. I must've went to the nurse's office 3-4x a week. I would go home sick about 2-3 days a week. It got so bad to where I eventually had to leave school for 4-5 months and we had to have a provided-tutor come to my house to teach me. During these years I developed the classic/typical "tics"– eye rolling, neck/shoulder shrugging, head moving/jolting, arm flailing–and also phonic tics, which are vocal tics. My vocal tics were awful. Screeching, screaming, grunting, coughing, throat clearing, and the worst thing... Coprolalia. Which for those of you who don't know, Coprolalia is "the medical term used to describe one of the most puzzling and socially stigmatizing symptoms of Tourette Syndrome—the involuntary outburst of obscene words or socially inappropriate and derogatory remarks. Other examples may include references to genitals, excrement and sexual acts".

Over the years my tics have changed, they've waxed and waned... Over my teen years my tics remained moderately severe-to-severe. They never really let up. Most people with TS tend to grow out of it by their late teens and early-20's. But not me. I still have TS. My TS is actually very severe. It's just very well controlled with my DBS and my Haloperidol medication that I take daily. I also am an EXPERT at holding in my tics (I've had a lot of practice over the years in school and in college)–so not many people that meet me know or find out that I have TS until I reveal my diagnosis to them. 

Overall, my battle with TS has made me a strong person. Growing up with TS was not easy. There was lots of bullying, embarrassing moments, crying, devastation, sleepless nights... Many of my tics over the years have caused me physical pain and discomfort. TS is not fun. Never would I wish my worst enemy to have TS. It's such a bizarre feeling–not being able to have full control over your body's movements and its sounds.

I'm very glad that my DBS procedure has seemed to help my TS symptoms very much! It's nice having relief from not only my OCD but also my TS, too. For those of you who don't know... DBS can and is also performed for Tourette's Syndrome. Yet, rarely ever. Only a few cases of DBS for Tourette's have been performed worldwide. From the study results I've poured over it seems to be moderately effective at treating it. It would be interesting to see what the future brings in terms of studies and research/clinical data in regard to DBS for TS and its effectiveness. 

Anyways... Thanks to you all for reading and following my journey!

Keep those prayers coming and good vibes sent my way for my journey with defeating my OCD/Anxiety/Panic Disorder/Depression/TS, etc...

FINALLY FEELING BETTER AFTER 3 WEEKS OF HELL...

Hi, everyone! 

So I had an appt w/ my psychiatrist up at UW on Friday via Telemedicine. The first thing he said to me is "gee, Mitch... You do realize you're on a lot of medications, right?". UH–DUH! But then you'll never guess what he said 10mins later; "let's put you on one more!". No joke. 

I had been experiencing SEVERE daily constant anxiety and panic attacks for the past 3 weeks. I thought it was related to my neurostimulator setting that they programmed me to at my appt on 4/7/23. So two days after that appt I went back down to 3.0mA's bilaterally on my stimulator thinking it was the change that was causing all of this. WELL COME TO FIGURE OUT it was the addt'l 5mg's of Haloperidol (my Tourette's medication) that I started taking the day of 4/7/23. I took started taking an addt'l 5mg's of Haldol because my Tourette's was getting bad on the new settings. So I figured upping the dose of Haldol would be appropriate. My psychiatrist down here in Portland okayed the move. Unbeknownst to me that overdoseage of Haldol can cause akathisia and anxiety in patients. So all along it was this damn addt'l 5mg's of Haldol that I self-RX'd myself. I have STOPPED taking the addt'l 5mg's daily and have gone back down to my original dose of 5mg's daily of Haldol. This has helped ease my anxiety SO much! I'm doing much better now. The new medication that my psychiatrist up at UW wanted to put me on is called "Propranolol" aka a beta-blocker. He said that this should be very effective at controlling my anxiety. But if I've solved my issue w/ the Haldol–then do I need to take it? That's the question I'm asking myself. Part of me HATES the idea of taking another freakin' medication. (I'm already on like 7-8). But if it will help keep my anxiety under control, then my interest is definitely peaked. So we'll see if I end up taking it. The other question is if my neurologist wants me to go back to the prior settings that she and my neurophysicist and Medtronic rep programmed me to during my last appt. (I'm waiting to hear back via MyChart). 

I'm so looking forward to the days that I can kiss my anxiety goodbye forever. It's so intolerable and uncomfortable to deal with. ESPECIALLY the panic attacks. I hate never knowing just when once will spawn and the wondering we're I'll be if one comes on, if I'll be able to make it back home before all hell breaks loose, etc. The PTSD I get from the panic attacks is SO severe. It's so disabling sometimes...

Anyways, my friends! Please keep me in your prayers and wish me good vibes! Pray that my anxiety and panic attacks get better and that I will have a bright future come here soon! Also pray for guidance for my team and doctors so that they can give me the best care possible. 

Thanks, all!

– M 

WHAT I WISH I COULD TELL MY BRAIN! 

 

 I'm doing a little bit better now...

Hi, all!

So some good news. My neurologist gave me permission to turn my neurostimulator to 3.0mA's bilaterally yesterday AM. So I have done that and it's got me feeling a little bit better. I'm still struggling immensely with daily constant anxiety and an "impending doom" feeling... But I haven't had a panic attack since Thursday–which is GOOD. I'm feeling like I need A LOT more stimulation than I'm currently getting. So on Monday when UW's neurology clinic opens I'm going to call and ask my neurologist if I could possibly have my settings turned up some (maybe to 3.4-3.5mA's bilaterally)–and have my local PDX Medtronic representative come meet me somewhere so she can update my settings.

The last week has been miserable for me. I'm HATING this CONSTANT anxiety I'm having. It's all just so frustrating–especially since on Friday last week I was feeling so good after my appointment.

Anyways... If you all could keep praying for me–I'd MUCH appreciate it! Pray that the anxiety subsides and that I can get some mental relief SOON! Also pray for guidance for my doctors and team up at UW...

Thanks for reading – catch 'ya in the next blog! 

REALLY STRUGGLING! INCREASED ANXIETY, MORE FREQUENT PANIC ATTACKS, SI...

Hi, all! 

So I'm really struggling. Over the past 5 days I've had 4 severe panic attacks and near constant anxiety all day long. I don't know what's changed... I was doing great for the 2 days after my stimulator adjustment appt on Friday last week. But ever since Sunday I've just been a mess. I'm experiencing near constant generalized anxiety all day long–which will very often (and has) turn/ed into severe panic attacks. 

Last night my panic attack was so bad–and my Dad said some extremely hurtful things re/ me and my illness/recovery that I actually attempted suicide again for the 3rd time. I hung myself with my belt from my bathroom door. The only thing that stopped me from blacking out was that I threw up all over my clothes and the floor–so I took the belt off of my neck and cleaned up the mess... Then I immediately went downstairs and admitted what I did to my Mom. We were thinking that I may need to go to an inpatient facility... But we ultimately decided against it because there is really nothing they can do for me there aside from keeping me safe from myself. Every single mental health facility/in-patient facility in Portland gets SHITE reviews. So that's scarred me off from ever admitting into one. We've decided that we're going to take all precautions to make sure that I''m safe at my house. That means not having access to car keys, medications, belts, rope, etc... I think staying at home and riding out the wave at home is the RIGHT thing to do for me. 

I MyChart messaged my Neurologist this AM and told her what's going on. I've been keeping in close contact with her–so that's good! We may have my DBS settings/parameters adjusted again down here in Portland. I may have to meet up with my Medtronic rep here in Portland again to have her adjust my settings. 

Anyways, friends... PLEASE pray for me in this difficult time. I am SO freakin' sick of dealing with my ill mind. I wish it would all just go away overnight. But I know this is NOT how this DBS works and that it takes time. I just hope I can and will be able to hold out 'til the better times come... It's getting harder to stay here every day. Thanks for keeping up to date with my blog–thanks for reading!

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! 

 Ugh! I'm struggling (again)!

Hey, everyone!

So if you read my last update you will know that we up'd my DBS parameters to 3.0mA's about 5 days ago. I was doing really good for the first two days–but unfortunately the 3.0mA setting was causing me to have severe insomnia (again). And also, I've noticed that I've been really struggling with my OCD thoughts, compulsions, more frequent panic attacks, and severe anxiety as of late. There was an incident on Friday evening where I had a very severe panic attack while at my therapy appointment. I noticed as soon as I entered my therapist's office I started having severe OCD thoughts and anxiety and uneasiness. 
As soon as our appointment started I told my therapist that I was having a panic attack and she asked if I wanted/needed to leave. I told her that "it's okay" and I decided to stick it out–which I'm glad I did. (And she was glad I did, too). After I got home I was a wreck, though. I was non-stop crying for 3-4 hours, was having SEVERE suicidal ideation–to the point where my parents wanted to take me into the ER or an inpatient facility. Luckily my Mom had the smart idea of going to get my Medtronic kit from my apartment and we turned down my stimulation to 2.5mA's so that I could just finally fall asleep. (I had taken my night time pills and was having severe insomnia due to the stimulator's settings–and due to my non-stop crying/hysteria). 

So friends... If you could please keep me in your prayers and thoughts I would appreciate it greatly!
Please pray that me and my doctors will be able to come up with the right/perfect setting for my neurostimulator–and that we'll be able to reduce my anxiety, OCD, and panic attacks. 

I have an appointment on Friday 4/7 up at University of Washington with my neurologist and psychiatrist for adjusting my DBS stimulator–and for routine follow-up.
I'm SO sick of my damn OCD, anxiety, and panic attacks having such a grip on my life. I just want to be a normal person and do normal person things...

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!