A few weeks ago I wrote about the intense hunger I feel multiple times during the day, and about my need to balance eating when I’m hungry with making sure my stomach is empty for the next round of Sinemet (carbidopa-levodopa). When I visited my neurologist after that and told her what I was going through, she changed my medication dosage and schedule. It’s working on some days, but not on others.
For example, here’s what happened today:
Morning
R = Ropinerole 0.5 mg; S = Sinemet 25/100; A = Amantadine 100 mg
4:15 –> Wake up.
4:30 –> Take R (3 tabs), S (2 tabs), A (1 tab).
5:15 –> Eat big breakfast: large bowl of granola with sliced banana, fresh pineapple, and an extra cup of walnuts; coffee; large glass of 2% milk.
5:45 –> Leave home for school.
6:30 –> Feel hungry. Eat banana, drink milk.
7:30 –> Take S (1.5 tabs).
8:30 –> Feel really hungry. Eat large sandwich of sliced turkey on multi-grain bread, eat another banana, drink large quantity of milk.
9:30 –> Going stir crazy with hunger. Feel jittery, hand is shaking and cannot write with a pen or type at the keyboard. Eat two string cheese sticks, drink more milk. My body is screaming for protein.
10:30 –> Take R (3 tabs), S (1.5 tabs), A (1 tab). Still somewhat stir crazy, hand is shaking less, but still not good enough to write with a pen.
11:15 –> Eat lunch. Finally am calming down.
The afternoon was uneventful.
I think what is driving my appetite is that I’m so anxious (anxiety being a PD symptom) that my metabolism is racing at high speeds, and I’m rapidly burning through all the calories I consume. My doctor noted that I hadn’t put on weight and my physical health in general was good.
I think she was also concerned that I might be binge eating, as one of the side effects of Ropinerole is uncontrollable compulsive behavior, like uncontrollable gambling or online shopping; hypersexuality; and punding. What’s punding? Here’s Wikipedia’s explanation:
Punding activity is characterized by compulsive fascination with and performance of repetitive, mechanical tasks, such as assembling and disassembling, collecting, or sorting household objects. For example, punding may consist of activities such as:
- collecting pebbles and lining them up as perfectly as possible,
- disassembling wristwatches and putting them back together again,
- building hundreds of small wooden boxes,
- trying but failing to systematically remove the entire contents of all the drawers and shelves in the home and sort through all their contents.
People engaging in punding find immersion in such activities comforting, even when it serves no purpose, and generally find it very frustrating to be diverted from them. They are not generally aware that there is a compulsive element, but will continue even when they have good reason to stop.
Oh well…on to Round 3!
Loved this blog. It’s interesting how each one of us is affected so differently by the PD itself, then with all the drugs they give us. The latter without knowing how we will respond, how much is too much, make us sick (nausea) make us shake and writhe (dyskinesia) or make our skin crawl. I feel very lucky to have been blessed with a few very good neurologists but the drugs make me wary and weary. The other thing you mentioned was taking the meds on an empty stomach. If I don’t take sinemet prior to eating, especially a large meal, I will get no benefit from the drug. And as the wearing off effects from the waning of the previous dose take over, I become plain miserable! My limbs become so heavy and the bones hurt, I start shuffling and my shoulders droop. I can’t think clearly and don’t make good judgments. I become so apathetic I can’t stand myself. The only thing that will get my attention is to have my partner say something innocent like “did you take your meds?” Then I go ballistic, get angry that I am being controlled and generally act like a spoiled child. When the sinemet finally starts to take effect (around the time the next dose is due) I become contrite, sheepish
and do whatever I can to repair the damage. What a merry-go-round!
my doctor recently added Escalitopram (anti-anxiety) with the sinamet in the mornings and it has stopped the hunger I had as well as you described. also helped with insomnia a bit too.
great page by the way 🙂