Tremors: My tremors are getting worse... - Parkinson's Movement

Parkinson's Movement
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Tremors

Witni
Witni

My tremors are getting worse. Is there anything that helped anybody else. My upper legs are also very weak. Can anything help with that? I take rasagiline and propananol. Thank you for input.

42 Replies
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I use a stationary bike in front of a tv to help with leg strength

Sorry to hear especially because the Parkinson’s I have is tremor dominant so I know what it’s like. I currently take this mucuna nutrivitashop.com/search.ph...

I make 500 mg capsules and take every three hours plus 4 grams of B1. The mucuna works very well for tremor most of the time.

jombi
jombi in reply to Erniediaz1018

Ernie, is the 500 mg equivalent to 1/8 tsp? Thanks alot

Erniediaz1018
Erniediaz1018 in reply to jombi

Yes exactly, that’s what I started doing initially, but you’re better off getting a small digital scale. Been doing this for over two years.

Hi Ernie, which brand of mucuna are you using? Also with the 500 mg, any nausea?

Every person is different, my husband has PD for 13 yrs, he started the mucuna in January and we are still figuring out the perfect dosage (if that exist😂)

Thank you for sharing.

nutrivita is the brand I’m using, I added the link in the previous message. Yes it’s a balancing act at first (not easy) no nausea once you get the dosage right. Use green tea for better absorption.

Thank you, Ernie!

CapSage
CapSage in reply to pdwife41yrs

Thank you for your post! Did you husband start the mucuna and stop using a prescription med, or is that his reason for starting mucuna? If so, what med was he taking before, and is it working to replace the med with mucuna?

pdwife41yrs
pdwife41yrs in reply to CapSage

Hi! He was taking 2-1/2 Sinemet every 2-1/2 hrs before he started taking Mucuna in January. We gradually reduce the Sinemet, currently, he is only taking one pill along with one Barlowe’s and 5 tsps Mucuna every 3 hrs. He still need the Sinemet for Carbidopa.

We are still exploring the perfect dose, but, he is much better now than when he was on 2-1/2 Sinemet. His dyskinesia is way less as well as the nightmares. My goal for him is to try the 100% Mucuna as less powder is needed, and so far from what I learned at this Forum from those who are taking it, the effect seems longer.

CapSage
CapSage in reply to pdwife41yrs

Thank you SO much for your reply!

Is the "Barlowe's" he takes the liquid? And are there other forms of Mucuna other than 100%? (I'm taking the Mucuna Pruriens capsules and Sinemet currently)

And do you know if Carbidopa is available by itself...for people who take only Mucuna but still need the Carbidopa to enhance the amount of L-dopa that gets past the blood-brain barrier?

faridaro
faridaro in reply to CapSage

If I remember correctly, one of the forum members mentioned that her husband who has PD takes Carbidopa and Mucuna.

CapSage
CapSage in reply to faridaro

Thanks! Do you know how to locate that post?

faridaro
faridaro in reply to CapSage

If I remember correctly her forum name was Despe and here is the link to her profile

healthunlocked.com/user/Despe

You may want to ask her.

CapSage
CapSage in reply to faridaro

Thank you!!!

So, you take the Mucuna and B1 but no added Carbidopa/Levidopa? And the 4 grams of B1 is what you take of that daily? If so, how do you split up the B1 during the day?

Maybe you are ready for sinemet, if you decide to go to sinemet ask for a continuous release CR. And not the immediate release.IR

RoyProp
RoyProp in reply to parkie13

My neurologist prefers smaller doses IR more frequent to avoid high peaks boluses

Carb /leva works on my tremor and gives my muscles strength . Propanolol is used in essential tremor. It may not be helping you if you have PD.

Who prescribed the medication you are taking, your family doctor or a Neurologist ? Did they say that you had Parkinson's? When was the last time they saw you? because

that meds list seems odd for PD.

Witni
Witni in reply to GymBag

Neurologist prescribed medication. He said I have parkinsons. Saw him a month ago.

Propranolol does not get the job done for me

Sinemet or DBS

pdwife41yrs
pdwife41yrs in reply to mktbob55

Hi, did you do the DBS? My husband’s neurologist suggested it as he is showing advanced stage of PD. He is not sure at this point although the neuro is in the process of completing the recommendation as it takes months to get it done.

Thank you.

mktbob55
mktbob55 in reply to pdwife41yrs

I did the awake surgery and a friend did asleep surgery.

The friend waited 10 years to get his surgery. He had the worst tremors I had seen. He lost about 60 lbs.

Result: 95% of tremors gone. There are potential side effect. Take the cognitive rest and discuss the results with you neurologist. Good luck

pdwife41yrs
pdwife41yrs in reply to mktbob55

Thank you for the info.

Madopar works fine with me

Madopar worked for me as well. I’ve been taking it for 18 months. Tremor has gone - unless I’m stressed - and then it’s hardly noticeable.

bita94
bita94 in reply to bandmember

Iei madopar cu eliberare imediata ziua, ce doza si la ce interva?

Iar noaptea iei madopar cu eliberare prelungita?

bandmember
bandmember in reply to bita94

I hope I’ve understood this! Italian? I can speak French, German and Spanish, but not Italian. I take Madopar 125 3 times a day - at about 7.30am, 1.30pm and about 6.30 pm. I also take Azilect (rasiglene) in the morning.

Hidden
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I had tremor too even if i was taken sinemet Every 4 hour then I started Every third hour the tremor is gone and more stabil in my body

My husband is not tremor dominant but does have tremor at certain times, such as exercise and showering and early morning and late evening.

He’s had PD for 5 years, but progression has been slow as I think he had symptoms for 5 years before that.

Started with Modopar and 4 months ago half a dose of Rasigiline.

The Rasigiline did help with tremors but worsened facial dyskinesia.

The Neuro added in Amantadine and it has really helped both with tremors and dyskinesia.

It sounds like you might need your Neuro to reassess your meds. We did change Neuros after 4 years as we weren’t happy with with our first one. Our new one listened to my husband reassessed his meds, and seems to have it right at the moment.

Any kind of stress will increase my tremor ( use up my meds in my body). I noticed more tremor activity because of this COVID 19 issue. I try not to focus on it but it is hard not to. I take a little extra meds C/L which helps.

My Doc added entacapone 200 mg in addition to my Levadopa it has worked very well. I was having off times at 3.5 hours now I am going the entire 4 hours without being off.

bita94
bita94 in reply to mitel

Cum ti-a intercalat entacapona cu levodopa?

SoundHealthPortal dot com does vocal evaluations for Parkinson's - they can possibly let you know the root cause of your issues - more info on them SoundHealthOptions dot com - this is an up and coming science that may organizations like Mayo and MIT are looking into

My husband became hysterical last night. I think the added uncertainty and fear of this Covid19 event can trigger all kinds of extra symptoms in people with Parkinson's. This started at 3am and lasted until 6am. I am grateful to be off work so I could sleep in. My advice is to avoid all news. You don't need to keep being told the sky is falling-- It's not. Put on some happy tunes, watch your favorite shows. My husband likes Lassie. That show brings him back to a happier, simpler time. He also likes old sci-fi from the 50s. They're so bad it makes him laugh. What are you doing to calm yourself?

ParlePark
ParlePark in reply to Teras

I couldn’t agree more! Great suggestion. Now all I have to do is listen!!

Teras
Teras in reply to ParlePark

You can do it! This will all be in the past in 2 months.

ParlePark
ParlePark in reply to Teras

Trying. Ha, thanks

Hikoi
Hikoi in reply to Teras

I am presuming this hysterical episode was a panic attack?

bita94
bita94 in reply to Teras

Si starea sotului meu referitor la nervozitate s-a schimbat de cind cu pandemia

Ar trebui calmante cred

You know, Teras gave very good advise

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