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.