I have Lyme. I’d like to not have it anymore. I also just want cake.
One ticket for the crazy train please?
So at my last phone consult with a PA at Dr. J’s office, it was decided that A) I was officially ready to move from their IV antibiotic program to their oral one (yay!), and B) that we would try to start tapering down on my anti-seizure med Trileptal. I take 900 mg a day, split in to two, 450 mg doses morning and night. Join me as I re-live the timeline of my decent into the madness that followed.
Friday – decrease dose by 75 mg. No noticeable change.
Saturday – maintain new dosage. No noticeable change.
Sunday 4-7 am: Vivid, bizarre dreams.
Sunday – maintained new dosage. No noticeable change.
Monday 4-7 am: Vivid, bizarre dreams. Tachycardia erupts after simply rolling over in bed.
Monday – 10am – 2pm: sudden nerve tingling branching from the base of my skull throughout my entire body. Heart pounding. Dramatic fatigue. Feeling like I’m losing my mind… very vague and hard to explain. Chalked it up to herxing from my first day starting the new oral antibiotic protocol – after all, I WAS on a LOT of pills.
Monday 2pm-6pm: Nap. Entire nap filled with vivid, disturbing dreams of me simply screaming. Was sent a text from D during my nap asking what I’d like for dinner. Apparently I awoke and typed out a completely nonsensical response but never hit “send” during my nap. I have no recollection of this. I discovered it when I woke up from my nap. My first thought was someone broke in to the house and typed that. So, I guess enter paranoia now? Later my heart would continue to pound and I would develop trouble breathing with new urges to leave the house and wander the streets with my messy hair, dirty clothes, no shoes, looking for something. I’m aware I’m starting to slip down the slide of psychosis, but at this point the feeling to uncontrollably explore it is there.
Monday Evening – decreased dose by another 75 mg. Can feel myself starting to really lose control of my mind, thoughts, and actions. Constant urges to scream. Urges to get up and wander strengthen. Urges to pace the house. Tremors. Feeling like I am going to seize, but never do. Part of my brain is still retaining its sanity and beginning to truly fear the part that isn’t. Still think I’m herxing. Required Marinol (praises to the off-label uses) and more benzos to fall asleep.
Tuesday 1am – 5am: More vivid, disturbing dreams of just me screaming in the fetal position all night long. Night terrors on crack. Restless sleep. Pain in my sleep. Woke up from each dream actually in the fetal position staring into the night with what I’m sure were the most dilated pupils a human being has ever donned.
Tuesday morning – maintained new dosage. D came out of his morning shower to find me sitting in the dark on the kitchen floor, not really responsive. All I remember is wanting to be by the stove, which I am now finding amusing as I type. So, at this point I knew I had lost about 70% of myself and it was 100% terrifying. D leaves for work. I have a panic attack on the bathroom floor.
I stumble around the house looking for my Ativan. I take one and pull myself together enough to write out emergency numbers for D as well as medication lists in case he needs to take me to the ER (present sane me as since looked at that list and it is completely wrong and unreadable). I continue to want to scream and leave the house because I feel as if I am going to die in the house. Nothing makes sense. I can’t form most words. Sleeping and being awake have melded in to one world and I felt like Sandra Bullock in Gravity when she is blown off her tether from the rocket thingy and is floating further and further away from the one thing that has grounded her. Fear… fear like I’ve never experienced before dictated my every action. I was THIS close to walking myself to the ER crying “someone please help me”. Help me from what? I had NO idea!!!
Yep, look at me all floating around out of control.
I then decide to take my Trileptal. My normal dose. My 900 mg original dose.
Over the next several hours, Tara came back. It is Friday now and has been two days of being back on my original dose. I tell you what…Wednesday… Wednesday when I felt “me” return, it was like rebirth. It was joy and relief. I can’t explain the experiences involved with moving around on the scale of psychosis; there really aren’t words. I can only describe my crazy reactions dictated by feelings or impulses we sometimes associate with fear or loss of control… but it was more than that. It was truly terrifying being the spectator as my brain slowly become something else and began to pull me into the dark along with it. I guess like how it takes a Lymie to know a Lymie, it takes a crazy person to know a crazy person. I don’t enjoy being a crazy person. BUT, that being said, the new oral program is going well… pretty easy in comparison actually. Now that we’ve got Tara back.
Ironically, I wasn’t taking ENOUGH crazy pills. Don’t mess with my Trileptal.