u/musicislife22

My mom's prescription is for Sinemet 25/100, 2 pills 3 times a day. She has started having these really awful labored breathing spells and we can't figure out if it's from too much or too little Sinemet - she started taking her doses closer together (about 4 hours apart) to see if that would help, and also tries days where she just takes 1 pill, but spaced closer together. We obviously want to do med changes in consultation with her neurologist, but it takes over a month anytime she wants an appointment, and we're also getting her a referral for the closest MDS but their wait time is a shocking 6-9 months.

So I guess what I'm asking is, how comfortable should we feel to try different things with the dosage of her Sinemet while she waits to be seen by someone? Clearly something about her current prescription isn't working and she's so desperate for relief. Thank you.

Hello all, I'm wondering if this community has any ideas for how to have a better morning? My mom wakes up feeling pretty awful every day - hard to walk, lightheaded, sometimes short of breath. These have seemed to be her classic "off" symptoms and she will get them throughout the day if she goes too long between doses. It gets better maybe an hour or so after she has her Sinemet, but it's rough until then.

This morning, she woke up for the first time at about 3am with twitching legs, took a sinemet (which usually helps with the twitching), and went back to sleep. She said she then woke up again about an hour later than usual, and felt worse than she has ever felt. She stood up and said she was having trouble walking more than about 6 steps - feeling dizzy, like she couldn't walk properly, short of breath, and she had a hard time thinking of certain words and thinking clearly. She was so addled she didn't even think of taking the Sinemet to help, which is what worries me most of all. She thought she was maybe having a heart attack and called 911 and headed to the hospital.

The strangest part of this is about a half hour after she got to the hospital, all of those symptoms faded away and she hadn't taken a Sinemet yet. Does anybody know why they would have suddenly disappeared?

She will be seeing her neurologist as soon as she can of course, but in the meantime I thought I'd ask this community if anyone has any insight both into how to not feel so rotten in the mornings, and also if anyone knows why these horrible symptoms would have suddenly gone away without taking a Sinemet. Thank you!