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...