Sinemet??: My doctor upped me from 2 to... - Cure Parkinson's

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Sinemet??

Kathy_M profile image
26 Replies

My doctor upped me from 2 to 4 pills a day. It seems to help except during stressful times. I notice when I'm frazzled, i have hard tremors.

My question is to those that take sinemet, what does it do for you?

Do your tremors go away completely ? How long does a pill seem to be effective ? Nauseous? Light headed, etc?

I appreciate the input.

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Kathy_M
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26 Replies
hopedope profile image
hopedope

I was diagnosed in February 2 years ago. A regular neuro prescribed sinemet (c/l) 25/100 to be taken at 6AM, 11AM, and 4PM. At the time I had a very slight tremor in my left hand when lifting a cup most noticeably and very tiny handwriting and a slightly bad gait (although I was wearing UGGs and due for bunion surgery in a few weeks). After my first pill my handwriting was normal, my tremor gone and gait fine. I am still on that same regimen and doing fine. My new Movement Disorder specialist (Elizabeth Ferluga) has me on that same regimen too. I would say my handwriting lately is not as perfect as it was after starting the sinemet. But I have no tremors and lots of energy. I never had any nausea with the sinemet which some get or light-headedness. I will be 76 in July. I think I was prescribed sinemet because of my age.

Kathy_M profile image
Kathy_M in reply tohopedope

So glad that it works well for you. I have bad tremors in my right hand , and the left hand has just started with tremors. My handwriting is sloppy. And evidently I don't swing my right arm.

When I take the sinemet , the tremors calm down but don't go away, if I get nervous, which is pretty much anytime I leave the house lol. The tremors get worse. I definitely have more energy , and love it.

I was asking because I've seen most people say , the tremors go away. And everything improves.

I'm 49, ill be 50 in November. I've had a tremor for almost a year, but really thought it was nerve damage from my neck surgery. I had an EEG, and they said I have carpal tunnel . As time went on its gotten much worse, and I have resting tremors. So my pain dr referred me to this neurologist. It's him and his medical assistant together. They both agreed PD. But want the opinion from the parkinsons Center at Vanderbilt. I can't see that specialist time Jan 31st. Since it's such a long wait , they started me on sinemet to see how I'd react.

I don't know what to expect but I know the tremors don't go away completely . But my energy and coordination are better.

Sorry so long winded lol. I'm mainly confused about meds.

Thank you so much for replying!

hopedope profile image
hopedope in reply toKathy_M

Others may have other opinions, but if sinemet hasn't stopped most of your symptoms than you may not have PD. There are so many Movement Disorder specialists at Vanderbilt that it's surprising you have to wait so long. There are also good ones in Birmingham. Dr. Valadez is the other specialist here--there is a 4 month wait for her and I think a 6 mos wait for Dr. Ferluga. There must be a lot of people with PD. While you are waiting, try to avoid stress and get as much exercise as possible. These two things are really important. I love my stationary bike and tai chi class and plan ahead as much as possible to try to ward off any stressful situations or problems.

Kathy_M profile image
Kathy_M in reply tohopedope

The one they scheduled me with is Dr Isaacs and I've tried to get in sooner

Cbgs profile image
Cbgs in reply toKathy_M

Kathy_M

Sinemet sometimes needs an assistant ...EG : Amatriptaline, Azilect, Pramipexole.

I'm not sure if I mentioned this to you in the past but...

I too am 49, also turning 50 in November !!

During ovulation my PD meds are less effective ...Something I learned the hard way.

That too may , and I'm only suggesting , play a role in your med effectiveness

Stress is a huge huge huge factor in PD symptoms

Perhaps add Xanax , CBD oil , cortisol quiet, adrenal relax, etc : just to name a few

There's also a host of thought soothing & breathing stuff like yoga, tai chi, music therapy...

As always... I hope this helps

Be well

C!

Kathy_M profile image
Kathy_M in reply toCbgs

Hey C thank you so much for your reply. I was wondering if most people take something with the sinemet. I'll ask my Dr about it at my next appointment. I've been thinking I need something for my nerves.

I've been in menopause for a lil more than a year. Which , now that I think of it, my tremors started around that time. I do appreciate you telling me that.

My birthday is Nov 16th, and yours? 😊

Cbgs profile image
Cbgs in reply toKathy_M

The 10th !!!

👍🏻👍🏻👍🏻

Kathy_M profile image
Kathy_M in reply toCbgs

Very cool!! Are you dreading the big 50? Lol

Cbgs profile image
Cbgs in reply toKathy_M

I'm hoping I'll be less stressed in my 50s!

honeycombe3 profile image
honeycombe3

Hi Kathy_M,

I checked your biog & I see that you are 40+ & recently dxd. I don't understand why you have been started on Sinemet. I was 56 dxd & immediately went into a trial at Birmingham University which randomly allocated me Sinemet (1 of the 4 meds favoured by GPs). After a fortnight scaring myself & anyone who saw me by falling , slurring my speech, dropping things - acting as though I was completely drunk - I was able to comeoff the Sinemet. After a few days recovering I started on a low dose of ropinirole, a dopmamine agonist & gradually titrated up until I was functioning almost normally. I still take ropinirole but 13 yrs on I now also take Sinemet & various other meds as needed. Do you have a Parkinson's nurse practitioner in your area? We have them in UK: their role is to support the work of your consultant. They can prescribe PD meds & recommend/refer treatments Perhaps you could look up the Birmingham PD meds trial, ask your consultant if he has read it & if so, what his plan might be for your future.

park_bear profile image
park_bear in reply tohoneycombe3

Sinemet CR helped me immediately without causing any problems. Ropinirole is a dopamine agonist ("DA"). DAs are very dangerous drugs - they can cause dysregulation of postural blood pressure which can be disabling and likely to be blamed on the Parkinson's. They also can cause impulse control disorders. Some seniors have lost everything due to compulsive gambling as a result.

Starting a new patient on Sinemet first is the correct procedure, as the potential downside is not as devastating. Some patients such as yourself do better on DAs. That is great but it's not the first choice.

Kathy_M profile image
Kathy_M in reply topark_bear

Ok I understand. Thank you for that

Kathy_M profile image
Kathy_M in reply topark_bear

I greatly appreciate your reply. Did you change your diet when you started the sinemet?

park_bear profile image
park_bear in reply toKathy_M

Only a little (Bears have a hard time controlling themselves around food ;-). I avoid eating a large amount of protein all at once, especially around the time I take the Sinemet. I seem to be able to get away with eating moderate amounts of protein - like a single egg - whenever I like. Also, at this point I am down to one dose of 50/200 C/L CR before bed. The story of how I was able to reduce my dosage from 3x/day: healthunlocked.com/parkinso...

Kathy_M, Sinemet controls my tremor 99% of the time. I don't think that anything works during stressful times. If you are having a stressful moment, the tremor will come back. I take the Sinemet CR, the controlled release form, and find it to be very smooth. It varies, but in my case, the average effective time is about 4 hours, I changed from one every 6 hours to one every 4 hours about 2 years ago. I supplement my Sinemet with curcumin in the morning as the first tablet of the day seems to take longer to work. I actually take curcumin and olive leaf extract before my first Sinemet for the day, and this works well for me.

Kathy_M profile image
Kathy_M in reply to

Is a vitamin that you take?

in reply toKathy_M

Curcumin is extracted from the spice turmeric, curcumin and olive leaf extract are herbal medicines.

Kathy_M profile image
Kathy_M in reply to

Oh interesting. Ok I'll look around for it. I haven't heard of that.

Cbgs profile image
Cbgs in reply toKathy_M

Curcumin & glutathione are awesome supplements for pwp!

I get mine from Dr Kenneth Bock of Red Hook NY

You don't need to be a patient to order his products

I see him for Celiac & Lyme

So I know his supplements are free of stuff like wheat & gluten

bockintegrative.com/

Be well

C!

hanifab23 profile image
hanifab23 in reply to

please tell where to get it from

in reply tohanifab23

It depends upon where you live. I live in Australia, where it is available from chemists (drugstores or pharmacies) and some "health food" shops. You can also use natural turmeric in different forms, but it should be taken with either black pepper and/or an oil like olive oil or ghee so that it is more easily absorbed. The capsules that I use, contain a mixture of curcumin and black pepper extract. This product can be ordered online, and turmeric can be grown in your garden if you live in a frost free zone. Do a search on youtube for videos about growing and processing turmeric roots. They are like ginger roots. It can stain your fingers or clothing, so be careful with it. Some people fry small pieces of the turmeric root in oil or ghee.

Cbgs profile image
Cbgs in reply to

Taking ur Sinemet with OJ will help metabolize quicker .

Kathy_M profile image
Kathy_M in reply toCbgs

Oh ok thanks C. I'll try it

Kaykaykay123 profile image
Kaykaykay123

I take one sinemet daily.It immediately stopped my tremor,however if I'm upset or in pain it comes back.I do get nauseous occasionally but was worse at first.

Kathy_M profile image
Kathy_M in reply toKaykaykay123

Ok thanks. I'm glad you all explained it a lil better

Beemacs profile image
Beemacs

Kathy_M & honeycombe3, I was dxed 13 years ago at age 52 & was immediately started on Sinemet. I don't have a resting tremor. Since then, I have been prescribed many other drugs & i am now taking Rytary, ropinerole, Azilect & amantadine. My symptoms & my results are like the nursery rhyme of the little girl with the curl right in the middle of her forehead~~when I am good, I am very, very good & when I am bad I am horrid!!!

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