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DEEP BRAIN STIMULATION FOR OCD – MY JOURNEY

My journey with suffering from SEVERE/EXTREME OCD—and my pursuit of getting the
experimental DBS procedure for my condition. Here you will find lots of
information re/ DBS-for-OCD and also personal updates with anecdotal stories,
updates, video vlogs, and various OCD-related info...





MONDAY, MAY 8, 2023


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 

Posted by Mitch at May 08, 2023 No comments:
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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! 




















Posted by Mitch at May 01, 2023 No comments:
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MONDAY, APRIL 24, 2023


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...

Posted by Mitch at April 24, 2023 No comments:
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PHOTO UPDATE! ME AND DOG GUS... 





> 

I'm so lucky to have my boy Gus! He loves me so much–and I love him. It's
sad–whenever I have a severe panic attack and am crying hysterically, he gets
really docile and scared. He always hides on the couch under the blankets and
whines until I stop crying. Usually in the beginning of my panic attacks he
comes up to me and kisses my face and licks my tears away. Those of us whom have
dogs are so lucky. Dogs are THE best form of therapy! I'm really hoping that my
anxiety and panic attacks get better soon so that I can start taking him for
walks and play fetch with him over at our family's farm property. That's
something that's been taken away from me by my panic attacks and anxiety, and
it's something that I miss doing dearly.

Posted by Mitch at April 24, 2023 No comments:
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SUNDAY, APRIL 23, 2023


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 








Posted by Mitch at April 23, 2023 4 comments:
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SUNDAY, APRIL 16, 2023





WHAT I WISH I COULD TELL MY BRAIN! 







 




Posted by Mitch at April 16, 2023 No comments:
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SATURDAY, APRIL 15, 2023


 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! 


Posted by Mitch at April 15, 2023 No comments:
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FRIDAY, APRIL 14, 2023


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!

Posted by Mitch at April 14, 2023 2 comments:
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FRIDAY, APRIL 7, 2023


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! 





Posted by Mitch at April 07, 2023 No comments:
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SUNDAY, APRIL 2, 2023


 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...






Posted by Mitch at April 02, 2023 No comments:
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TUESDAY, MARCH 28, 2023


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. 


Posted by Mitch at March 28, 2023 No comments:
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SUNDAY, MARCH 26, 2023


 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




Posted by Mitch at March 26, 2023 No comments:
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SATURDAY, MARCH 18, 2023


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! 


Posted by Mitch at March 18, 2023 No comments:
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THURSDAY, MARCH 16, 2023


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  


Posted by Mitch at March 16, 2023 No comments:
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THURSDAY, MARCH 9, 2023


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. ↓










Posted by Mitch at March 09, 2023 No comments:
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SATURDAY, MARCH 4, 2023



 I JUST HAD MY DBS NEUROSTIMULATOR TURN-ON APPT & PROGRAMMING APPT THIS AM! OMG,
MIRACULOUS RESULTS / OCD = NEAR CURED...




HI, ALL! 


LONG TIME NO SPEAK. IT'S BEEN EXACTLY ONE MONTH SINCE MY 2ND STAGE OF MY DBS
PROCEDURE SURGERY. (THE IMPLANTATION OF THE MEDTRONIC CHEST DEVICE AND
CONNECTION OF THE LEADS VIA THE WIRE UP THE NECK). 


TODAY ON MARCH 3RD, 2023 I HAD MY VERY FIRST DBS DEVICE PROGRAMMING APPT AND
DEVICE TURN-ON. MY APPT WAS AT UNIVERSITY OF WASHINGTON MEDICAL CENTER WITH
DR'S. YI-HAN LIN MD (NEUROLOGIST), DR. MICHAEL J. SCHRIFT, DO (PSYCHIATRIST),
DR. VINCE MARTINEZ, MD (NEUROPHYSICIST), AND LOREN DEMUR (MEDTRONIC
REPRESENTATIVE). THIS APPOINTMENT WAS CREATED TO TURN MY NEUROSTIMULATOR ON AND
TO ALSO INPUT THE PARAMETERS GIVEN TO MY TEAM BY DUTCH MT. SINAI WEST NYC
NEUROSURGEON, PSYCHIATRIST, AND NEUROLOGIST NAMED DR. MARTIJN FIGEE (WHO IS THE
WORLD'S EXPERT ON DBS FOR OCD). WELL ONCE THE DEVICE WAS TURNED ON – PURE MAGIC
HAPPENED! 


HERE'S WHAT ENSUED: 

MOTIVATIONAL MOMENT THE DEVICE WAS TURNED ON: ↓

























Posted by Mitch at March 04, 2023 No comments:
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THURSDAY, FEBRUARY 2, 2023


I JUST HAD THE SECOND AND LAST PART OF MY DBS PROCEDURE FOR OCD.






I just had the second (and last) part of my DBS for OCD procedure today at
University of Washington medical center! The surgery went GREAT! I was under
general anesthesia – so it was IV-in, wheeled to operating room – given
anesthesia and 1-2-3 knocked out... Seemingly shortly after I awoke in the
recovery room. The surgery took about 1.5hrs. They implanted the Medtronic pulse
generator in my chest and connected all the wires in this procedure. 


The Medtronic representative came into my pre-op room and talked with me about
the device and answered many of our questions about the device. Like "can I go
thru airport security", "can I ever have an MRI again", "what's the battery life
like", etc. I also got to see what the device looked like (though I forgot to
take a picture of it – darn it!). My Mom asked out of curiosity how much the
device cost – and she answered "around $20,000". Omg, crazy, right?


I am so glad to be done with all of the surgeries!
I still can't believe that I actually had DBS done. It was 2yrs ago that I first
started my journey to DBS. (Having my first appt with a neurosurgeon at OHSU in
Portland). All of my hard work and research paid off – and thank the lord that
insurance agreed to pay for the procedure. (w/o having to argue with them or
appeal any decision... They approved it straight-up! Which is a miracle in
itself).


Now comes the programming of the device. I have one month 'til I need to come
back up to Seattle for my first programming appt. This appt is when they will
turn the device on for the first time. Here's to hoping that this procedure will
be effective and that DBS will work for me! 


Thanks everyone for all the prayers, well wishes, and good vibes sent my way! I
can't tell you how much I appreciate it. 


I will keep updating my blog with more videos and posts once I start the
programming of the device and start the therapy. Thanks for reading!




Posted by Mitch at February 02, 2023 No comments:
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SUNDAY, JANUARY 29, 2023


I JUST HAD MY DBS-FOR-OCD PROCEDURE PERFORMED!



                       


Hi, all!
So I am now day 3 post-op and am back home down here in Portland. (We got back
yesterday afternoon).
My surgery went great w/o complications, said my neurosurgeon. my CAT scan
afterwards showed no brain bleeding & that they leads were placed exactly where
my neurosurgeon wanted them placed.
Overall the surgery was a weird experience! It was strange being awake for so
much of it. It was really bizarre feeling the vibrations and hearing the sounds
of the skull drill – and also hearing the sounds of the scalpel scraping into my
skin for the incisions. It was also weird to feel them take out the test
leads/electrodes – it felt like them pulling out a long spaghetti noodle from my
brain. It also felt weird having them poke and prode around inside my brain
while being awake. The most uncomfortable part of the surgery BY-FAR was them
removing the catheter… (OUCH!)
The surgery took about 6hrs total.
Next week on Thursday (2/2/23) I’m going BACK up to UW in Seattle for stage II
of the procedure – insertion of the Medtronic pulse generator & the connection
of the wires to it.
They won’t turn my pulse generator on for a little over one month after this
upcoming surgery. My first programming appt is March 3rd.
Overall the care and team at UW was fantastic! I’m so glad I had my retired-ICU
nurse Mom there to keep me company and make sure the nurses were doing things
correctly! My Mama is THE BEST nurse, ever!
We ran some annoying issues with my medications they were suppose to provide me…
Just them not having them on hand and the nurses messing them up in the
computer… And one SUPER incompetent pharmacist at the pharmacy when we were
trying to pick up my Oxycodone to leave the hospital. (Boy was that a story!).
First picture is immediately after surgery – other picture is yesterday
afternoon.
Thanks again, all – for the prayers, well-wishes, and good vibes! I can't tell
you how much I appreciate it!








Posted by Mitch at January 29, 2023 No comments:
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ABOUT ME

Mitch Hey, there! I'm Mitch Q. I'm 25yrs old and am the owner/proprietor behind
this blog. Feel free to contact me w/ any questions you may have re/ DBS for
OCD, DBS operation/procedure, OCD, Anxiety, Panic Disorder, Depression, BDD,
BED, chronic insomnia, etc... View my complete profile



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