stopped C/L carbidopa levodopa er - Parkinson's Movement

Parkinson's Movement
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stopped C/L carbidopa levodopa er

RoyProp
RoyProp
30 Replies

After slow descent as of today I am not taking park med. Watching the symptoms for any change.

30 Replies
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Springfield78

good for you! I feel natural is the safest and healthiest way to go.....if our bodies will corporate! You will soon learn if it works for you! Good luck!

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bassofspades

Good luck and congratulations!!! I hope you never need to go back to them. Thank you for keeping us updated

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nourilo

How are you feeling?

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RoyProp
RoyProp
in reply to nourilo

Increase of tremor

1 like
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M1tz1
M1tz1
in reply to RoyProp

Eat coconut oil. My husband hardly has a tremor and I give him a tablespoon of coconut oil with each meal. Can be mixed into food.

I'm not a Parky but had a bad hand tremor so that I couldn't write or do other hand-related things. The Dr said it wasn't PD but something absurdly called Intentional Tremor. When my husband got Alzheimer's I put him on coconut oil and took it myself. Our tremors disappeared. Hope it works for you. :-)

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marcet
marcet
in reply to M1tz1

Strange on how we react differently. I eat 3 ts with each meal and it does nothing to reduce my tremors

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Rosabellazita
Rosabellazita
in reply to M1tz1

All i have is tremor in right h. Im going to try coconut oil

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dreem
dreem
in reply to RoyProp

try gluten free and sugar free diet, it has helped with pain and some of the tremors for me that is I know we are all different

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laglag

Good job. Keep us informed.

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grower

I stopped mine for a week but had trouble sleeping so started it again two days ago and am sleeping fine. Could be psychosomatic though?

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sjannie

i wish you GOOD LUCK

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Shege1

Hi Royprop

Good to read. Are you really sure you had PD? When were you diagnosed and what meds did you take after diagnosis? How have you been managing ur PD? I'm interested in reducing or stopping C/L. Presently I'm on an outrageously high dose of 16 tablets of sinemet 275mg daily. I barely all day as I have to d med every 1hr 30min. That is 4,000 L-dopa and 400 C-dopa. Pls I welcome any suggestions and assistance. Thank you all.

Shege

2 likes
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RoyProp
RoyProp
in reply to Shege1

My neuro assures me, yes you have park. Look at my Profiles, how I manage.

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Jlloy5
Jlloy5
in reply to Shege1

You sound like me as far as dosage. I do detox from it 1-3X a week though...meaning I stay home and don't take any of it except maybe at bedtime, so that I can get comfortable. I experience severe muscle cramps and toes curling the first 20 hours of not taking it, but a super hot bath with epsom salt, baking soda, essential oils and time will solve that. I usually feel great the second day and by the third day the tremors seem to annoy me enough to take it again. My mood is so much happier without it. The primary reason that I do this is because I've noticed that the C/L works much better with less medicine when I skip several doses. It isn't easy to do, but it is effective. I have had PD since my third child was born 10 years ago, and I am currently 44 years old and have to keep up with three kids ages 15, 14 and 10.

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RoyProp
RoyProp
in reply to Jlloy5

I have read about holiday from C/l is beneficial

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M1tz1
M1tz1
in reply to Jlloy5

Sad for you. Hope things go better.

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RoyProp
RoyProp
in reply to Jlloy5

Regular, chronic use of L-DOPA causes dopamine receptors within the brain to become less sensitive, leading to the eventual need for increased dosages of L-DOPA. Research suggests that taking a "drug holiday" from L-DOPA may resensitize dopaminergic receptors and lower the patients L-DOPA requirements, or at least prevent the need for increasing L-DOPA in the near future. In a three-year study, 15 Parkinson's patients were submitted to a seven-day L-DOPA drug holiday. Within the first six-months following the drug holiday, symptoms improved dramatically, and all of the study subjects were able to maintain a L-DOPA dose regimen of 50 – 70% of their pre-holiday dose for the entire three-year period (Corona 1995).

4 likes
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Jlloy5
Jlloy5
in reply to RoyProp

Thanks so much for posting this. I was just going by how my body responds, and it's great to see that it's actually backed up by research. I ran my first 5k Saturday, and did a 2 day C/L holiday Thursday and Friday prior to the race. Everything worked perfectly, and I actually ran faster than everyone in my group including my 14 year old son. 😊🎉

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DrPete
DrPete
in reply to Shege1

Hi. I cannot speak for others but I’m much better (almost) off my meds - down from 8 to 2.5 (teva-carbilevo 25/100). Plus going vegan 5 months ago today - also cutting out all sugar and refined carbs. I’m far better and stronger than ever!

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Astra7

Hope it goes well. Good luck.

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czimmerman

Wish I had the courage.

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jeanette2372

Thank you for keeping us posted. All the best!

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NRyan

Warrior on!

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RoyProp

clarification "After slow descent..." descent off C/L.

My wife says I have slowed down since stopping C/L. My earlier reply in this thread, "increase of tremor", seems to have leveled off.

In the past when stopping a diff park med, for a couple nights (in bed) my legs would on occasion jerk. That stopped. I am experiencing the same leg jerking for stopping C/L. I expect that will also end.

My hope is I will be able to tolerate some slowness and tremor for the foreseeable future. That is at least until August app with my neurologist. I want to prove to him......

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iqbaliqbal
iqbaliqbal
in reply to RoyProp

What's your age RoyProp? I could not find it in your profile

1 like
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RoyProp
RoyProp
in reply to iqbaliqbal

70

2 likes
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iqbaliqbal
iqbaliqbal
in reply to RoyProp

Ok thanks. You are a great contributor on this forum. Keep it up!!

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Janx

I read this with interest. i've heard coconut oil helps the tremors. I cant take as have heart problems and cardiologist said not good for the heart.

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DrPete

I’m almost there too - off meds - with some trepidation- but feel lots stronger and more together- for now anyway. Also went Vegan exactly 5 months ago today. Luv it.

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