NeuroTalk Support Groups - C-Ldopa increase week 2 nausea like the spins is this normal?

so week 1 of 1/2 pills (25/100) = really well, took about 4-5 days to adjust and not be nauseas. apparently i was taking them an hour before eating instead of an hour after eating, which does make a difference for me.

now on week 2 (full pills 3x/day): i literally feel like i have the spins 20-30 min after taking the pills, dizzy, and like im going to puke everywhere, I have been faced with some whacky digestive issues because this is the first time in about a year I am eating meat/fish once a week...at that after the hernia repair roughly 2.5 months ago so my stomach is pretty sensitive.

I went ham haha and ate a giant grassfed burger on sat. i guess i should have split that up and not eaten the entire thing that day (i had it over the course of a few hours), and i was not super nauseas that day!

But since Sunday morning-now I have been super nauseated, my stomach is like oscar the grouch haha and I cannot digest food well i have become a bathroom hermit. I have resorted to mini saltine crackers, peppermint tea, adding ginger to ramen type noodles, but anything that is acid like (citrus, tomatoes etc), dairy, bread (wheat gluten[?]), etc basically anything except broth, water, and crackers my digestive track will not accept. I also have resorted to naps or lying down for 1-2 hours right after taking the pills bc i am too nauseas to move, not a bad thing not a bad thing i have not had time to take naps since pre-school so i can't complain and my sleep schedule at night has been so messed up that its for the better. finally to the point haha

is it common to have a lot of nausea when increasing doses/does it eventually go away?

I'm a little concerned that this DatScan won't really show anything, but i am no doc and its not my place to assume things, I am very mindful of this, its just that I am taking ~57 pill/ week, I read that sometimes in early onset and even in those of typical age onset, that the scan may not show any abnormalities, that results can be normal and its the clinical in office criteria that has been the main nail that has tacked down a dx.

what were/are your experiences with results-did the DatScan aid?
Were you on a trial/L-Dopa challenge before the scan as well?

how long was your dx process?

I sometimes feel like (and maybe this is just because its been hard to eat since Sat. remember the rule HALT hungry angry lonely or tired meet 1+ of those and take a chill personal time out and meet the needs before giving into the emotions-a little hard to do this but im adjusting to meds) this is so much medication and im so nauseas since i started full doses, that it isn't worth it, i just don't know, and i know i need to give the full dose a chance. even on half doses i was feeling it kick out and i would get in awful moods most likely because i felt incredibly like stone.

how could people be dx with something that is still so hard to diagnose and has so many symptoms, and yet before I/we/anyone in this diagnosis process is "formally" dx'ed we get the CLdopa or L-dopa trial challenge.

It seems like it is a really heavy duty drug, what if it is a placebo effect-if the scan comes back and shows normal but primidone didn't do anything but depress me and make me like a mock version of the ambian walrus before, what do i do?

I am seeking advice, at least my neuro/mds was honest enough to say he wasn't comfortable doing anything with me before having his senior partner who he works for check me out. initially he discussed botox injections in my hands which i had heard of for a good 2-3 years since arm surgery, but then he went with his gut and told me "hold on I'm gunna grab the MDS I do injections for... he is /the/ guy who only focuses and treats mvt disorders and I inject for his patients, i want him to check you out before we go any further" I am thankful but this is nerve racking at times. I know even if its ET there aren't cures, I am coming to grips with all this bc that is the best case scenario out of all these possibilities. If it was wilson's I feel like my neuro would have the right mind to call me and say "oh hey dude we don't need you to waste more money and get the DatScan because the results of the urine and blood are that of wilson's" but i have heard nada! I have to gut out 10 more months until my partner moves here and finishes his OT degree (talk about the universe working wonders haha). Get through this scan on thurs, then my follow up with neuro/mds is early next week. God please no more drug changes haha.

I don't think this is a placebo effect bc I am able to do more and when i am late taking a dose it feels like my body turns to stone-quite like a gargoyle lol. But i guess I am just very skeptical and think its absurd to be on this amount of medication before they have a "formal dx" which it seems doesn't even really exist(?) i am confused about that. I also have never experienced a placebo effect so haha i have no way of telling i guess especially on the amount of medication i am on right now.

I keep hearing and reading theres that lingering 20% thats misdiagnosed by all means i will not be offended if you correct me, i want to learn as much as i can. and i don't know everything, i am eager to hear what everyone has to say, statistics, studies, i know everyone responds differently and has different bodies. as an artist i am brutally honest and as a human i think chronic illness or not, that is how i am able to function/be rational/work within my limitations and be as positive/joyful to enjoy a great creative life!

i won't let this rule my life, it took me 4 hours to chop and make a meal that usually would take me 20-30 min without these issues and that was on the 1/2 doses last week. matter is: i WAS able to chop even if it took hours and i ended up feeling like a gargoyle and pushed late to eat before taking the next dose. I wasn't able to chop before the meds! But still grabbing things is pretty difficult, as is pulling or pushing a cart (whether its my personal shopping caddy idk if thats the right word-med is kicking in or its a grocery cart) or holding some things. then there was going out to eat with my med school friends. i met a new friend but couldn't eat for 15 min and my food was getting really cold. at which point the convo with this fellow in scrubs fresh out of surgery went to "hi why aren't you eating?! are you [dont remember what he said some other med condition]" to
"well i am on a trial of a parkinson's drug". insert sad face here. BUT to my surprise he was incredibly positive and actually yielded me some good advice for future situations! and he asked how i was feeling which was a really refreshing thing to hear for once!

but this is my daily dose of meds: epilepsy meds 2000 mg, b12 1000 mcg, D2 50,000 IU/week , 3 CLdopa 25/100 per day, adhd 27 mg, birth control

D2 is once a week
and the B12 i just chose to get injections of once a week instead of what i have been doing (sublingual once daily)

i feel sometimes like my life has become totally centered around a pill time table lol and that perhaps the injection will eliminate 7 pills from my week...

if anyone has had experience please share of sublingual vs injections...again i know we are all different, but it is good to hear all of your experiences and thank you in advance