Tuesday, May 16, 2023

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!

Monday, May 8, 2023


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 

Monday, May 1, 2023

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!