2:30am question, ill give it a shot 8( - Cure Parkinson's

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2:30am question, ill give it a shot 8(

TheLordsWeapon profile image
30 Replies

Cant sleep what else is new, but I have a question anyway

(Diagnosed 3.5 years ago).... I have been taking 250mg of Sinemet, 5 times a day for 8 months now, has anyone taken more then that in 24 hour period and experienced severe side effects?

God speed...

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TheLordsWeapon profile image
TheLordsWeapon
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30 Replies

200mg x3 daily, no side effects. I understand 2g day max recommended

TheLordsWeapon profile image
TheLordsWeapon in reply to

correct 2g per day max, doc did tell me he has many patients taking more than 2g per day....what a horrible thing to have to do everyday, my God,, 8(

thank you for reply sir

GymBag profile image
GymBag

I take

APO-Levocarb 5 doses x 1 tablet (25 mg - 250 mg each)

Carbidopa / Levodopa 7am, 11am, 3pm, 7pm, 11pm

I have had PD for 17 years.

It is possible that you are severely over medicated

talk to a Neuroligist , get a second opinion.

Warning it is important that if you are going to reduce PD medication that you do it slowly ,do not suddenly stop.

TheLordsWeapon profile image
TheLordsWeapon in reply to GymBag

Thank you, yes doc was thinking of going higher on dose, maybe even extened release im now waking up in middle of night with tremors in legs and arms and foot cramps... fun

thx u sir for reply...

ps.. im 57 was diagnosed at 54

park_bear profile image
park_bear in reply to TheLordsWeapon

Extended release works much better for me than immediate release.

Astra7 profile image
Astra7 in reply to park_bear

I asked my neurologist for extended release but he dismissed it saying it doesn’t work. Can you tell me which brand etc you are taking. I think I need a new neurologist!

park_bear profile image
park_bear in reply to Astra7

I agree with you on the neurologist. Also, any physician can prescribe it, so if your primary care physician sees fit that would be another possibility. I am just taking carbidopa/levodopa generic ER, ER standing for "extended release".

TheLordsWeapon profile image
TheLordsWeapon in reply to park_bear

just asked docs office for CR script, they will get back to me todat, ill keep you posted

thx Bear 8)

SilentEchoes profile image
SilentEchoes in reply to Astra7

Rytary worked well for my mom.

TheLordsWeapon profile image
TheLordsWeapon in reply to SilentEchoes

thank you silent, may even go that route, will see what half asses game plan the docs come up with while us lab rats wait for the next piece of cheese...thc agian

God Speed 8)

TheLordsWeapon profile image
TheLordsWeapon in reply to park_bear

going to see my neurologist on Monday, was planning on mentoining the extended release ...

thx ParkBear, blessings..

TheLordsWeapon profile image
TheLordsWeapon in reply to park_bear

parkbear, going to ask my pcp to write a script for sinemet CR, and give it a try, he;s already been writing me scripts for sinemet for 2 years now, so cr request should not be a problem i would think

PCP's very open to experimenting,, within reason that it......he registered me for med cannabis back in July that help me get to sleep pretty quickly and worked wonders on my mild to moderate lower back pain ive had for 2 years, he just said "you have to be willing to try anything with this very persuasive disease..

Hikoi profile image
Hikoi in reply to TheLordsWeapon

This is PBs favourite chant I think. I use extended release too but dont expect miracles. It may or may not suit you. I didnt like it when I first tried it at 3-4 yrs post diagnosis.

Juliegrace profile image
Juliegrace in reply to TheLordsWeapon

Are they PD resting tremors or violent movement more likely to be dyskinesia?

TheLordsWeapon profile image
TheLordsWeapon in reply to Juliegrace

Julie Hi,

no not resting tremors, just right arm and leg sometimes both shaking and also stiff wrist knee joints, jaw will snap shut at times when trying to sleep, bit my cheek and tongue a few times 8( some really bad foot cramps also at 4am almost every night and when in between doses "off" time i get that feeling like my skins crawling very disturbing feeling, like an itch you cannot reach in parts of my arms and legs i have to get up and move, walk to get any relief from this horrible feeling, then it goes away once next dose kicks in..

Angora12 profile image
Angora12 in reply to TheLordsWeapon

My husband has had simular . It only stops and has been 100 times better when he take his meds at 2.00am.

He is on zandopa the natural product one scoop supplied and takes only a 62.5 mardopa with each zandopa for absorption help. He has tried going without the 2.00am but pays for it with the symptoms u describe. You do sound like you are on a high dose of levodopa for being only 3 yrs into it. Zandopa does work for him and he can feel it kicking in much better than just mardopa.

Blessings

Hikoi profile image
Hikoi in reply to TheLordsWeapon

Sounds like too much rather than too little levadopa. I wonder what Julie Grace thinks. She understands PD.

parkie13 profile image
parkie13 in reply to GymBag

Hi, I wonder if I have you mixed up with somebody else? I thought that you were taking a lot more C / l.?

Moorhen2002 profile image
Moorhen2002

That seems to be a very high dose. I was prescribed 6 x 25/100mg tablets spread over 3 doses per day and could not tolerate the side effects. Splitting headaches, nausea and sickness.

I cut the dose slowly 1/2 a tablet a time down to 4 x 25/100mg and that stopped the problem the only thing is whatever I take does not seem to me to be doing anything in fact since starting on the meds my tremors have got worse and with the constant workout they get, the muscles in my left leg ache constantly. My foot hurts and feels like the bone is being twisted along with cramping toes. I have now been given Neupro 2mg/ 24 h patches of Rotigotine, now on day 14 with no difference so far. I don't think there is anything that helps my symptoms.

Moorhen2002

TheLordsWeapon profile image
TheLordsWeapon in reply to Moorhen2002

Moor, was that an initial dose? if so seems kind of high for just starting out on c/l

Moorhen2002 profile image
Moorhen2002 in reply to TheLordsWeapon

Hi TLW,

when I was diagnosed in February 2018 after trying me on Ropinerole, Madopar and Sinemet I was finally put on the Sinemet Plus 25/100mg 2x3 times a day, I didn't have any idea then that it was a lot to start with except that a friend was started on just 3 tablets per day. (She has a specialist PD Neurologist mine is not a PD specialist)

Like I said though in another recent post my Neurologist was happy for me to play around with my dose hence when reducing it to 4 tablets per day 1 1/2at breakfast 1 1/2 at lunch and 1 after my evening meal seemed to get rid of the awful side effects that I mentioned, because I have now been given a Neupro 2mg / 24h (Rotigotine) I have reduced my tablets by another 1/2 so now i'm on 3. 1/2 a day , unfortunately I don't honestly think they are making any difference to me my Tremor never gives up I am just thankful that although I do not get much sleep apart from a few twitches my Tremor does not kick in when I go to bed.

Good luck with sorting yourself and your meds out,

I don't know who it was that said recently that " we have to be our own Doctor" how right that is, after all we know our own bodies and what we can tolerate.

Moorhen2002

Niggs profile image
Niggs

Hi friend,

I'm taking sinemet cr 200mg 5 x daily, the action is a lot smoother BUT, the cr/er is not a direct swap for instant release versions. I can't recall the exact %'s but 200mg cr/er is equivalent to 150-175mg instant release.

But I'm also now taking the new comt inhibitor OPICAPONE/ OXYGENUS and this has been a game changer. I'm now getting more L.dopa from my current regime without upping the total daily L.dopa.

I've gone from housebound to building a deck in the garden and walking 1/2 mile.

May be something to ask the Dr's.

Best

Nige

Pelley profile image
Pelley

I've taken 3-25/100 every 3 hours around the clock for more years than I care to remember

TheLordsWeapon profile image
TheLordsWeapon in reply to Pelley

pelly is that 300mg than every 3 hours?? I was thinking of trying the same thing, since the docs dont give a shhit and we've all been trying diff dosage amounts and timing anyway.....srry just venting

Jockboy17 profile image
Jockboy17

I'm new here but everyone talks about the need to pay close attention to diet and exercise. have you evaluated those 2 areas?

TheLordsWeapon profile image
TheLordsWeapon in reply to Jockboy17

yes very much so, some people are more sensitive than others with protein which i found is one of my biggest culprits. had to change everything around, now i have a light breakfast with ZERO protein and a lunch with no more than 5mg of protein or less, and for supper, a moderate protein amount less than 10mg, i found that my sinemet dose ( 250mg tab 4 times daily ) was giving me more relief by about 30 minutes in between doses when following this plan, but it differs for everyone, some dont even get bothered by protein..

Welcome, and Good Luck, ask any questions on these forums, fantastic people here

God Speed

Jockboy17 profile image
Jockboy17

from what I've learned it's more than just avoiding protein close to siinemet doses. low carb, high healthy fat, moderate protein is talked about a lot. what about your exercise routines?

TheLordsWeapon profile image
TheLordsWeapon in reply to Jockboy17

this is true but protein a main culprit

alaynedellow profile image
alaynedellow

I dont take my modopar in eve as it keeps my mind too alive to sleep. I take 1 pill 6am n other one 14.00 hrs. Both extended release. I sleep gd8 hours a night

TheLordsWeapon profile image
TheLordsWeapon in reply to alaynedellow

im pushing the CR when i see doc on monday

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