I was diagnosed with Parkinson’s disease over 7 years ago and I was prescribed carbidopa/levodopa from the beginning the doctors kept increasing the medicine as my symptoms became worse over the years. After four years taking the medicine, I begin to experience frequent off times, when the medicine would stop working too soon or when it would take the medicine too long to start working. This increased until it was happening 3-4 times every day. My symptoms became worse and more out of control. I also began to have more episodes of brain fog. (I also have Thyroid disease, and had been diagnosed with having Graves’ disease, TED, and had also been treated for seizures several years prior to my PD diagnoses.)
My vision blurred and I was seeing double and triple with multiple halos. Driving at night was impossible, and driving during the day was becoming more dangerous with the increased brain fog lack of activity. I was calling it my brain disconnect because it felt like my brain was not communicating with the rest of my body. If I was driving, and the light turned red, I needed to stop the car. My brain would tell my leg to slam on the brakes and stop the car, but my body wasn’t moving at the same speed as my brain was telling me to move. My body was in slow motion, and by the time the car had actually stopped, it was in the middle of the intersection, this was a big problem and I started to worry what would happen if a little kid happened to jump into the intersection and I couldn’t stop in time because of the brain fog. Even simple things like signing your name on a document, is difficult to do when your brain isn’t on the same wavelength. I have signed my name a thousand times over the years, but I couldn’t get my hand to pick up the pen and write my name on the paper. I just couldn’t do it! I had to quit working and I filled for disability.
Then my VA doctors completely changed my treatment. I had been taking Carbidopa/levodopa100 2 pills, 6 times a day. My VA neurologist changed the Carbidopa/levodopa to 200 MG SA tabs ( I take 1 tab, 6 times a day) and he added Entacapone 200 MG (also 1 tab, 6 times a day).
This has made a huge difference! Before, I rarely had an entire day without any major Parkinson’s problems or symptoms. Now I have between 1 and 1 1/2 days good days every week. A good day is when the medicine is working as it is supposed to, I am not having very many troublesome symptoms, I’m able to do some light housework, actually cook dinner, and then usually sleep fairly well.
There’s some symptoms and side effects that I consider normal, I have all the time, and I just deal with them: migraines, lightheaded, nausea, lack of appetite
Then I have a day of insanity! I don’t know what causes it but the day usually starts out with me feeling exceptionally well. The medicine seems like it’s working, and I’m feeling very motivated to get things done. I’ll eat breakfast, and begin doing whatever is running around in my head. Pretty soon, it feels like I’ve been triple juiced with caffeine and my mind won’t shut down until this “thing” is done. I start stumbling around and into walls, furniture, etc, like I’m intoxicated. I feel like I’m going to either pass out or throw up, and I go to lay down in bed. But I can’t stay in bed long and I’m back at it again. My heart feels like it’s beating faster than usual, but this insane day won’t end until it feels like someone has tripped the power breaker off! It feels like I’ve crashed or hit a wall. It definitely feels like my medicine isn’t working. I’m able to go to bed and get some sleep. The remainder of the day is spent in bed, taking my medicine when I’m awake and recovering.
The next day or two after the day of insanity are usually bad days both physically and mentally. I’m exhausted and I don’t feel very good at all. My medicine seems to be working, but I’m very stiff, in a lot of pain, very bad migraines, my brain is fried. I have no appetite and no energy. After I beRead More Read Less