Functional Tremors/Lyme Seizures, whatever you want to call them… suck.
Seriously, they are awful. They are incredibly painful and terrifying and have consumed me for the last month.
In September I experienced my first episode, which I spoke about here. By October I had two more and in November they were a weekly occurrence. Before long it was 5/7 nights a week. I would spend 2-4 hours convulsing and dropping in and out of consciousness while Daine or my Mom held my head and stopped me from falling off the bed. At one point in the ER I had a person on each limb holding me down to a stretcher (or something) while transporting me to a bed. I remember waking up to a hand the size of my face holding me down so hard I panicked not being under his strong grips, unable to move- yet still convulsing at the same time. Losing control of your body is mortifying and being conscious and aware of it is even more so.
During one of the other hospital trips I was able to see a neurologist who diagnosed me with Functional Tremors. Great I thought, now how can we make it stop? I’ll do whatever it takes.
“Unfortunately”, she said, “There’s no treatment.”
My heart sank and a rock pitted in my stomach. I was defeated in every way. It took everything in me to hold back tears. Someone please wake me from this bad dream, this can’t be happening. Haven’t I suffered enough? Haven’t I paid for my wrong doings by now?
Three more weeks passed. The tremors were only getting worse. The Dr’s tried me on various medications with little-to-no improvements. It was wearing on me, my relationship, and my family. Hope was becoming a distant feeling when, my TCMD (Traditional Chinese Medicine Doctor) gave me a herb to try called Di Long. (She said don’t Google it, just take it.)
And I did.
And it f*cking works. (Sorry Mom)
2-4 hour tremors are now a MAX of 30 minutes because of this stuff. It tastes far from fairy dust, but it’s freaking magical and IT WORKS.
For five nights in a row I have had tremors and 5/5 this stuff has stopped them. I felt (and still feel) like crying happy tears thinking about how much it has changed my life in the last week. I hate that my Lyme is progressing, but hallelujah to being able to stop the seizures it causes!
Here’s to Di Long and all the nights of sleep to come (hopefully!).