About a month ago, I had a televisit with my neurologist who after hearing my struggles with staying "on" during the day, added COMTAN to my cocktail of drugs in hope that it would extend the "on" period of the Carb/Levo tablets. We started out with only one Comtan (Entacapone) per day. It worked so well, I almost felt normal again. I was so excited I hoped that Dr. Aragon would increase it to last all day. He did. He instructed me to add one 200 mg tab to each dose so I went from 1 tab to 4 per day adding yet ANOTHER dopamine agonist to the two others I am taking.
To no one's surprise, it only took 2 1/4 weeks of 4 per day to put me in a psychotic state with a disappearing memory. It felt very strange to be alert and aware of the changes. It was in slow motion coming on stronger each day until I had a break on a Saturday night when i took myself off of it when I became afraid to leave the house. I immediately called my neuro's office to schedule a follow up televisit to discuss.
He basically said, "Its time to consider DBS brain surgery. You are already at doses that are too high and nothing we try is working." "You are cooked," is what he told me as he handed me a prescription for DBS evaluation back with the University of Miami team (where I started out in January 2015). I am happily returning to the care of Dr. Carlos Singer (head of movement disorder neurology) and very experienced and acclaimed DBS surgeon, Dr. Luca. Dr. Aragon assures me, I should get approval this time. My televisit is scheduled for this Thursday, August 27th.
In the meantime, I introduced him to my rescue drug - Kynmobi, a listerine type strip that goes under your tongue and snaps you back "on" in a matter of minutes. I personally love this drug and use it as my rescue. It does not build up like Comtan; it assimilates the dopamine so it works faster and its more stable. It also stops my very painful cervical dystonia in its tracks. Unlike Comtan, I can take this up to 5 times per day and remain sane with no side effects. Perfect for me because I'm topped out at the number of drugs i can safely take, but they have become a problem because that max is not working. The current regiment of sinimet, amantadine, two Neupro 8mg patches, gabapentin, clonazepam and propranolol; has me "off" more often than "on". Kynmobi is my only resort that still works and brings me fully "on". I am using the extra clinical trial tabs that I've kept cool and dry. When the strips are introduced to national pharmacies. I will get a script and use this until surgery. Thank God I still have a med that does the trick.
I will let you know if I get approved and moving forward to a surgical date. Stay tuned.
PS: Go to www.InkForPD.com today to support PD research funding. Thank you.
Wear Your Heart On Your Sleeve
"Lisa Chalker is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."