Sinemet and shakiness: Hello all! Curious... - Cure Parkinson's

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Sinemet and shakiness

MissRita profile image
38 Replies

Hello all!

Curious if anyone has ever experienced tremoring and more shakiness after you taken Sinemet? I take 25/100 and before it starts to work I’m shaking and tremoring quite a bit before it takes effect. Any feedback would be great! Thanks.

38 Replies
laglag profile image
laglag

That happens to me almost every time for about the last 2 - 3 years. I take my medicine and almost immediately I start shaking, I have tremors mostly in my left hand, my head bobs around and my mouth tremors. It happens until my meds kick in.Don't really understand why it does that. I thought it was in my mind but maybe it's not. After my meds kick in everything's usually pretty good.

MissRita profile image
MissRita in reply to laglag

Yeah I find it so odd and I’m not sure if it’s because it affects the Vagus nerve or the digestive track or what but it’s nuts.

pdpatient profile image
pdpatient in reply to laglag

@laglag and @missrita, it happens to me also. Consistently within a matter of seconds, really. One day, i was desperate. I was shaking horribly and an office videoconference was coming up in 15 minutes. I popped in a 20 mg propranalol pill and to the amazement of my wife and I, the tremors subsided in 5 minutes. Vanished in 15 minutes, right before the meeting.

I asked my MDS for an explanation and he said that I was experiencing an adrenaline rush when I was taking my Rytary and the propranolol was tamping it down. The instant shakes have nothing to do with the actual Levodopa release. And, oh, BTW, he noted that 20 mg was too high and prescribed me 10 mg. It still works like magic.

Hope this helps.

RKM

OAFC profile image
OAFC in reply to pdpatient

Hi pd patient, I suffer with the tremors predominantly left sided in my hand and foot..Was just wondering how many times a day do you take propranolol and is it always effective..??

pdpatient profile image
pdpatient in reply to OAFC

@oafc, it is always effective and I just take it now when I get those uncontrollable tremors. About two or three times a day.

I have taken much higher doses before, during the initial stages of Parkinson's up to 80 mg 3x per day and that was quite effective on its own for some time. As I have said in some of my previous posts, medical research is coming around to the consensus that it's a good treatment for Parkinson's tremors and not just for Essential Tremors.

Talk to your doctor about the medicine and see if it is right for you and works out well for you. For your sake, I pray that it does. 🤙🏼🤞

RKM

OAFC profile image
OAFC in reply to pdpatient

Thank you very much,Much appreciated 👍😀

Hikoi profile image
Hikoi in reply to pdpatient

Hey pdpt. Very interesting but I dont understand about the adrenaline rush. Is this caused by the rytary? But he said it’s not nothing to do with the actual levadopa release but it seems like it does because it is triggered by it - or is it?

billPD profile image
billPD in reply to laglag

Google the side effects of sinemet

Canddy profile image
Canddy in reply to laglag

I have the same experience as laglag but not all the time - happens only occasionally

MissRita profile image
MissRita in reply to laglag

I’ve also read that these meds are a mildly stimulating.

JerryinSATX profile image
JerryinSATX

Personally, I started with 1/2 of a Sinemet 25/100 3x/day and quickly went to 1.5 tablets 3x/day. After a few months, I was trembling before my next dose. My Neuro told me to.adjust my dosage as I saw fit and let him know via the my chart system (email). I increased my dose to 2 tablets 3x/day and have been on that dose for the last 5 months and feeling quite stable. I am participating in a clinical trial to.see if Posiphen (Alzheimer's drug) can help us Parkies. I'll have a spinal tap on Tuesday before starting on an unknown dosage for 21 days, then a 6 hour stint with blood and spinal fluid sampling each hour to conclude the trial period.How much Sinemet are you currently taking per day?

MissRita profile image
MissRita in reply to JerryinSATX

Typically in the morning I will take 1 mg of azilect and two tabs of Sinemet XR25/100, then after that it’s pretty much a crapshoot for the rest of the day. In the afternoon I could take two more I can take one more and then later on if I need more it just really depends on the day. It’s very inconsistent in terms of what my body needs.

MissRita profile image
MissRita in reply to MissRita

UPDATE: stopped taking the above as the XR 25/100 really killed my gut and GI tract. Now I take 2 IR and 1 Mucuna 2/3X a day. Tremor still the only symptom. My small/large intestine are still having a field day…headed to a NGM Dr. At Mass Gen. January 2021.

GymBag profile image
GymBag

I strongly suspect that you are taking too high a dose (only one tablet) and that doses be spread out evenly through your waking hours.

After 20 years I am taking one tab at 7am , 11 am ,3 pm, 7 pm 11 pm and sometimes at 3 am

I have never taken more than 1 tablet at a time

MissRita profile image
MissRita in reply to GymBag

Ok! I’ll try that!

MissRita profile image
MissRita in reply to GymBag

25/100 XR?

MissRita profile image
MissRita in reply to GymBag

OK so I started doing what you suggested and it has worked very well. I still get a little shaky but not nearly as much as when I took two tabs at a time. I do notice that it takes a little bit of time for it to get into the system but once it does it’s OK and I just have to wait for it. I am taking it every four hours like you suggested and hopefully this will make me feel a little bit better and I also noticed that when I woke up today I didn’t feel so overtired and I didn’t tremor nearly as much when I woke up today as I have in the past so I have to think that maybe I just overdid it with the LC in the past.

GymBag profile image
GymBag in reply to MissRita

I think that you should confer with a neurologist . He may recommend other meds . to augment the LC and counter side effects . You seem to be still taking a bit too much LC for the length of time you have been diagnosed. Yes you can decide and control the amounts you take but the Neuro can get you to a minimum amount of meds and you will still be comfortable.

WARNING all PD meds should be increased or decreased very slowly . This is important you can not just drop a medication . Seriously, one of the potential effects is death.

MissRita profile image
MissRita in reply to GymBag

2015, signs, 2017 Dx. I’m on Rasagiline too. I haven’t dropped any and I know what you mean ;)

MissRita profile image
MissRita in reply to GymBag

Also what’s the difference between CR and XR?

in reply to GymBag

Hi, I’m new as of today on this site and I find it very interesting that you are taking one L/C and that in the past you took more. I take two 100/25 L/C at 6am, 9am, 12pm, 3pm, 6pm, 10pm and at 2:30 in the morning I take 1.5. I also take entacapone and Mirapex. I have really had a bad time trying to get a working recipe this past year. I’m wondering if I should scale back.

koshca profile image
koshca

Yes.

LAJ12345 profile image
LAJ12345

My husband found it made him overly anxious when he started on it which did mean he tremored more when he never really used to.

gingerj profile image
gingerj

Hi missrita.From my experience I find that i have three phases with sinemet.

Off phase- when im slow and shakey.Exaggerated symptoms phase- when my tremor is much worse and i get crippling dystonia.

On phase- when i feel most normal.

I take sinemet 100/25 with entacapone every 2 hours in the morning and every 3 hours in the afternoon to a total of 6 a day now.

I find that the interim 'exaggerated symptoms' phase happens as the level of dopamine increases towards ON and again as it decreases towards OFF. It tends to last about 30mins.

The best way i find to minimise it is to take my meds on time. If i forget i can feel the first tell-tale signs and know its too late and i will have to put up these tremors while the dopamine level rises to the ON threshold again.

On a good day where i get the timing right, i should only see the increased symptoms after my first dose in the morning as the levels rise to ON and after my last dose in the evening as it falls back to OFF again.

Hope this helps.

MissRita profile image
MissRita in reply to gingerj

Thx!

MUCU profile image
MUCU

Hi miss Rita I have the same problems it’s really annoying if you do some research you will the this tablets have bad secondary effects it’s a very complicated issue this tablets . I’m going to try to change it I don’t feel too

MissRita profile image
MissRita in reply to MUCU

Thx!

ScribblerCLT profile image
ScribblerCLT

I have consistently got tremors after my morning dose of Sinemet (levodopa-carbidopa) and COMTAN / Rasagiline / Pramipexole for two hours and sometimes all day for the last eight months. I'm thinking of phasing out PD meds because I think they're poison.

laglag profile image
laglag in reply to ScribblerCLT

Talk to your doctor first. You can have bad reactions if you stop them all at once you might have to go off of them slowly.

ScribblerCLT profile image
ScribblerCLT in reply to laglag

Yes. It’s beginning already. My neurologist reduced my pramipexole by half because I was having hallucinations. It Is the first time I’ve been really clearheaded for months. On the downside, the tremors and imbalance are wicked. But I will try to ramp up exercise.

laglag profile image
laglag in reply to ScribblerCLT

Do you have a Rock Steady Boxing near you?

ScribblerCLT profile image
ScribblerCLT in reply to laglag

No, unfortunately. I’m thinking of taking an online class, but boxing is more fun in person

laglag profile image
laglag in reply to ScribblerCLT

It's non-contact and it's just for people with Parkinson's (PWP's). rocksteadyboxing.org

Keep fighting! 🥊

ScribblerCLT profile image
ScribblerCLT in reply to laglag

Always. It helps to be bloody-minded.

PDGal4 profile image
PDGal4

In addition to making med changes slowly, my neurologist advises consistency. The body gets used to timing of medication. It also takes 2-3 months for your body to adjust to medication and dose changes. This disease has taught me patience. Patience when you are moving slowly to get things done. Patience waiting for meds to work. Patience in finding a dose and combination most effective.

Annemaria profile image
Annemaria

Yes, I have the same experience every now and then, and sometimes it continues until the next dose.

cartercj2018 profile image
cartercj2018

Hi Rita, how long have you been on sinemet?

MissRita profile image
MissRita in reply to cartercj2018

Since February 2021 and I don’t think a lot of it. Even the last couple of months I’ve had very odd side effects is if I’ve taken too much my body just can’t handle it anymore. Again I really take a lot but it actually makes the shakiness far far worse.

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