From the beginning of this adventure, I’ve been told that the medicine I’ve been taking would gradually lose effectiveness as time goes on. Of course, I think that’s true for just about any condition if you take the meds long enough. I have a pretty strong cocktail these days.
As you will find out in a future post, when I received my official diagnosis in 2014 at the age of 37, I was told that it would be best to stay away from medicine as long as possible. And I think I made it pretty close to 3 1/2 – 4 years before I started.
The main drug is Carbidopa/Levodopa 25/100 – its regular name is Sinemet. This is the generic. Now I can’t remember which does what exactly, but the 25 mg of Carbidopa, I feel certain, is what prevents the 100 mg of Levodopa from going to places in the body where it should not go. I could have that reversed, but it is the main thing that helps calm the tremors and helps me to be able to do things – including typing this post!
Originally I was put on Selegiline. I had to take one when I got up and one NO LATER THAN 1:00 p.m. as it would supposedly keep me up at night. (I often remembered to take the second one at 5 p.m. and had no problem sleeping.)It’s an MAO inhibitor which helps to slow the breakdown of the neurotransmitters – one of which is dopamine! It never felt like it did anything. I would still shake, but that was back in the day when the tremors still seemed pretty mild.
About six months later, in August of 2018, I was given the C/L 25/100 I mentioned above. I had to gradually start it over the course of six weeks or so. I remember it took from the tail-end of August to mid October. Seems to me I took 1/2 tablet in the morning and 1/2 in the evening, and introduced a half a tablet each week until I was taking 3 whole tablets a day.
Since then we’ve added a few more “half tablets” throughout the day and a night-time dose of C/L 50/200 controlled release. My PCP also added a blood pressure tablet. High BP runs in one side of the family and if you can believe this, it has not only calmed me considerably, but I have gone from “loose fit” to “regular fit” pants. That’s a win!
I remember taking that first half tablet in 2018 though. I remember the instant feeling of feeling “normal” for the first time in a few years – almost instantly! And I stopped taking the selegiline because I felt this was doing the trick… and it did… for a while.
But the 50/200 controlled release is a different story. Obviously a little more potent, the idea is for it to get me through the night and when I first get up so I am not shaking too much before the first daytime dose at 8:00.
For the last 6-9 months, the dosing has gone like this:
- 8:00 a.m. – 1.5 tablets of the C/L – 25/100; 5mg Selegiline
- 11:30 a.m. – Repeat 8:00 a.m.
- 3:00 p.m. – 1.5 tablets C/L – 25/100
- 6:30 p.m. – 1.5 tablets C/L -25/100
- 10:00 pm. – 1 tablet C/L 50/200 CR; and the BP med
I have managed to get by with one nighttime tablet for about 18 months. But lately I’ve noticed that getting up in the morning was a bit challenging. Lately the 3:00 p.m. dose hasn’t been doing much good either.
Dr. B. gave me her blessing to up the 50/200 to 1 1/2 tablets for a week, and barring any negative effects, increasing it to 2.
Now let me tell you – elevating that dose by half a pill was no problem. But when I raised it a week later to 2 – HOLY SHIT! The dreams! The dreams are terrible! I have had repetitive dreams – though very few at a nightmarish level – some based on elements of events from the day before. These just go around in circles and I seem to be unable to get out of the situation… until I wake up… almost always at 3:30 a.m. and can be awake anywhere from 15 minutes to 2 hours.
Getting to Dr. B. by email took a few days, but she responded that if I was getting to 8:00 a.m. with fewer tremors to keep it up and only to revert back to 1.5 if I really had to and it would eventually work out. I must admit that I reverted back that night and the dream was so horrific I was glad Baby Red was spending the night with me! 2 tablets it is!
The 3:00 p.m. dose has been upped to two whole tablets too. After I experienced what had to be the WORST tremor situation on an afternoon where I was expected at an event. Fortunately I was on site, but locked in my bunker shaking my sillies (and a lot of other things) out. Just a half tablet more improved the situation immensely.
I am grateful for medicine… but I truly hate the adjustment period!
1 comments
Eric, I do hope you compile all of these and create a book that can guide and inspire people with all kinds of medical and mental issues. I find myself reading them and kicking myself for not trying harder or whining over small stuff. Your positive attitude is remarkable.