New guy with PD -- How effective is your meds at controlling tremors?

[NewGuywithPD]

Hello every one

I just joined.

I was just dx'd with PD.

I have very mild symptoms so far.

I have very, very slight tremors in my arms and hands.

QUESTION: When taking your meds, what percentage of your tremors is controlled?

Thank you.

[laglag]

Welcome! When my meds are working I would say 95-99%. When they aren't working, my head bob's and my whole upper body shakes. But...the "professional" PwP (person with PD) knows Everyone is Different! It's ofton called the Snowflake disease.

🥊 Keep fighting it!

[PDWarrior1900 in reply to laglag]

thank you very much for your reply and inspiration!

[Astra7]

Totally controlled, but my tremors are not bad compared to stiff and slow muscles.

[PDWarrior1900 in reply to Astra7]

thank you for your reply -- just to be clear... when you are on your meds... you have 0% tremors, is that correct?

[Astra7 in reply to PDWarrior1900]

Yes. But tremors are not really my problem - until recently I didn’t have them at all. Now without meds my hands shake rendering me useless.

[PDWarrior1900 in reply to Astra7]

thank you for your reply and STAY STRONG!

[justhavefun2]

I am 4.5 years post diagnosis. Tremors are new to me. When I take the proper amount of Roprinerole and I am “on” I don’t have any tremors. It’s a process for sure. Welcome to the club that nobody signs up for! All the very best!

[PDWarrior1900 in reply to justhavefun2]

thank you for your reply!

[Headache58]

Welcome, my symptoms are tremors which I am fighting by exercise. Not taking meds yet. You will find your own way with the support of the "club"

[PDWarrior1900 in reply to Headache58]

thank you for your reply!

[Dragona]

My husbands tremors are very mild so no meds Vitamin B1 a good start for PD not necessarily tremors

[PDWarrior1900 in reply to Dragona]

thank you for your reply!

[JohnPepper]

Hi. I am not a doctor but I can tell you that there is no medication on the market that can Cure Pd! They all set out to hide certain symptoms.I was diagnosed with Pd in 1992 and in 1994, I started to do Fast Walking, which has reversed many of my symptoms. This has been backed up by the Mayo Clinic studies, which prove that High Intensity Aerobic walking, which Fast Walking is, produces a substance called GDNF and THAT REPAIRS YOUR DAMAGED BRAIN CELLS abd you start getting better. It does not cure Pd!

I have lived a normal life since 2002, when I stopped taking my MAO-b Inhibitor medication, which does help to slow down the progression of Pd. Contact me and I will give yo all the information, free of charge.

[PDWarrior1900 in reply to JohnPepper]

thanks john!

[JohnPepper in reply to PDWarrior1900]

You are very welcome!

[Lemmy1958 in reply to JohnPepper]

Hi John are you the author of Reverse Parkinson's Disease? - please send me the info - Regards Derek

[LAJ12345 in reply to Lemmy1958]

Probably better not to put personal email publically in case you get hassled by spam etc. send private message😊

[Bonzu]

Unfortunately nothing seems to control my tremors. B1 made my hand tremors that much worse. Had mild right hand tremors for about 6 years now spread to my lips/ tongue which is very embarrassing. I have to keep chewing gum and wear a bite raising appliance( like a mouth guard) when they get bad at night. Recently saw Dr Tabish Saifee (quite nice ) and prescribed rasagiline. This takes 2 to 3 weeks to work . Will see. Pramipexole was a disaster and madopar seems quite ineffective. They say the first 5 years are the honeymoon period. It was like that for me. So make the best of them.

[Astra7 in reply to Bonzu]

What did pramipexole do?

[Bonzu in reply to Astra7]

Insomnia, constipation and finally chest pains. Shivered for two days as I reduced dosage to stop it. It did nothing for my tremors. A very bad experience. But as the neurologist said it works well for some. It is a law of averages what works.

[Bramma in reply to Bonzu]

I’m the same as you Bonzu, had PD for 4 years and nothing seems to help tremor which is slowly getting worse. Just recently noticed slight tremor in bottom lip. Have tried most meds prescribed by my neurologist and nothing helps. I exercise an hour every day in the gym, walk every day 2-3 miles and play tennis 2/3 times a week but still progressing slowly.

[Bonzu in reply to Bramma]

Hi Bramma. Don’t know if my reply went. So sorry if I am repeating. At the moment I am taking 50 mg/12.5 Madopar, Rasagiline 1mg( started last week) and 1 clean mucuna L-Dopa 99% by British supplements. I get quite a reduction of tremors at least in the mornings. I got some improvement using mucuna powder by health essentials . However using powder is messy and you have to buys device to measure small weights. I plan to increase the dopa tablet to 3 a day. But this time I plan to increase slowly. Good luck.

[Bramma in reply to Bonzu]

Hi Bonzu, I’m on 100/50 Madopar 3 times a day I get slight relief from lip tremor an hour after taken medication. Tried Rasagaline ended up in A & E some kind of reaction. Tried Amantadine with no benefits.Interesting Mucuna powder helps your tremor maybe I will try it.

Tried high dose B1 but no benefit to the tremor.

I’m beginning to think apart from DBS that there’s very little chance of getting rid of the tremor.

Where do get mucuna powder from I’m in England.

[Bonzu in reply to Bramma]

Hmmm a bit worrying rasagiline reaction! I have tried couple of mucuna powder and tablets. I am Maltese but live in Benfleet Essex. For 5 years I used zandu zandopa an Indian product but did nothing for my tremors. Then tried dopaboost tablets - no luck. Then indigo herb powder. Stopped my hand tremors for a while but felt faint and nauseous. Than NOW capsules-no luck. Then health essentials capsules. Some relief but not much. Then Essentia Health powder. Combined With one 50 mg madopar was quite effective for a couple of days in reducing tremors. But the powder was messy to take. Now I am using British Supplements clean mucuna L - dopa 99% . One capsule is supposed to give you 353.7 mg L- dopa. Tremors much less in the morning. Hope to increase slowly to 3 tablets a day. If you Google them you will find them. Hope this helps.

[Bramma in reply to Bonzu]

Thanks Bonzu, I will give it a try 👍

[LAJ12345 in reply to Bonzu]

Which essentia health powder? There seems to be a range of them. Thanks.

[Bonzu in reply to LAJ12345]

Name of company- Health Essentials Direct.High strength Mucuna Pruriens L- Dopa extract powder.

[PDWarrior1900 in reply to Bonzu]

thanks!

[PDWarrior1900 in reply to Bonzu]

is this the one you bought?

healthessentialsdirect.co.u...

[Bonzu in reply to PDWarrior1900]

That is the one.

[PDWarrior1900 in reply to Bonzu]

thanks -- how much do you take daily?

[Bonzu in reply to PDWarrior1900]

I stopped taking it as measurement difficult to assess. Also it leaves black stains when glass washed. Best thing is to buy a device to measure small amounts. More accurate this way. I am now using capsules from British Supplements called clean mucuna L-dopa 99%. They are supposed to give 353.7 mg of LD. I have only started so can’t recommend them yet. But initial signs are good.

[PDWarrior1900 in reply to Bonzu]

i don't see that product listed on their website... the mucuna capsules...

can you please send me that link? thanks

[Bonzu in reply to PDWarrior1900]

Try Googling Mucuna powder. First thing that shows up on the left are the capsules.

[PDWarrior1900 in reply to Bonzu]

so the british company doesn't sell them? OK thanks

[Astra7 in reply to Bramma]

I’m having alot of trouble with tennis as I keep falling over. I’m now playing without really running but it’s not very satisfactory having to watch the ball sail over me!

[Bramma in reply to Astra7]

I cannot play anything like I used to so just insist on playing doubles and stand at the net claiming all the glory. I always try to ensure that I have a younger fitter doubles partner and myself😂😂

[PDWarrior1900 in reply to Bonzu]

thank you for your reply! and STAY STRONG!

[ddmagee1]

Perhaps 80-90 %.

[PDWarrior1900 in reply to ddmagee1]

thank you for your reply! and STAY STRONG!

[Following_closely]

Like you, my symptoms were very mild when I was diagnosed. Five years in, my tremor is still completely controlled by my meds, although other symptoms have worsened. But as you’ve heard from others, everyone is different. Best wishes to you.

[PDWarrior1900 in reply to Following_closely]

thank you for your reply! and STAY STRONG!

[fel3k]

I would recommend you purchase "Parkinson's and B1 Therapy" on Amazon...many have reduced their symptoms dramatically. I am trying this on my husband. Many testimonials on this B1 therapy for PD.

[PDWarrior1900 in reply to fel3k]

thank you for your reply! and I hope your husband IMPROVES!

[fel3k]

P.S. My husband has been on meds for over 6 months and he has not had any reduction in his tremors.. I am excited to see how the B1 Therapy improves his PD symptoms

[sleepmaster4]

Hello there...my father has had Parkinson's for 18 years and I had wrist twitching in both hands 5 years ago, which I fixed naturally by using a computer lying down instead of sitting down (took several months). Even now, it's very rare I use a computer sitting down and I call looking downward at the monitor the "Parkinson's position" to get my father to stop doing that. I would never take Levodopa or any other Parkinson's medication after seeing what Levodopa did to my father. But everyone's ability to handle medication is different, so you have to observe your own body's reaction to it. Good luck.

[PDWarrior1900 in reply to sleepmaster4]

thank you for your reply!

[Missy0202]

I am tremor free 95% of the time. I have been taking sinemet for the last 2.5 years

[PDWarrior1900 in reply to Missy0202]

thank you for your reply! and STAY STRONG!

[docjleonard55]

My Sinemet working great for my stiffness, but almost nothing for my tremor

[Astronomer90]

I was diagnosed a few months ago although I have right hand tremors for 1.5 years ago. My neurologist tried Amantadine and Levedopa Carbidopa. But none of them helped with tremors. He referred me to MDS. I am waiting for my appointment with MDS. In the meantime, my family doctor prescribed me propanol which reduces tremors by 50-60% for 2-3 hours. I do a lot of running about 7-9k for 5-6 days a week. It helps with tremors.

[Victor1975]

I would recommend that you think on long term. trying to reduce inflammation and oxidation of neurons.

- Silymarin

- Vitamin B9 (Folic Acid) and B12 for reduce Homocysteine

- Niacin

- Thiamine HCL

[Sandmanliz]

I also take inderal (propranolol) 80mg ext release 1/day. helps! so does extra Mg++. Costco sells a combo vitamin : calcium citrate, magnesium, and zinc with vitamin D3 all in one pill. Mg and Ca are membrane stabilizers and work in combo. helps the tremor, especially those internal ones, and you'll sleep better too!

Symptoms for us all are very different but this site is fantastic and has great links to education and break throughs. I am very grateful.

Number one consistent helper: exercise. If you didn't before, start now.

Also, don't focus on why you have it, but where you are going........ xxoo. RN, CRNA

[kaypeeoh]

I've had a tremor in my dominant hand for 4 years. Various medications have done little to stop the tremor. Then I had botox injections in my elbow and wrist. It' s not a cure but it significantly dampens the tremor. One treatment lasts about 3 months.

[Bramma in reply to kaypeeoh]

Hi Kaypeeoh, interesting that Botox helps your tremor. I like you have tried many different meds/exercises but nothing reduces the tremor.I have tried to find somewhere in the uk who carry out Botox injections but struggling, where abouts are you.

[kaypeeoh in reply to Bramma]

I see a neuro at Hartford Health in Mystic, Connecticut.

[Bramma in reply to kaypeeoh]

Thanks kaypeeoh

[GregSurfs]

Hello NewGuy. I'm also somewhat of a "NewGuy" in that I was diagnosed approx 14 months ago. You're at the right spot with the HealthUnlocked crew. Plenty of people here with good suggestions and a "can do" spirt. You've got lot of good suggestions above so I'll add something very specific you might consider to improve your situation: resistance training, weight lifting, whatever you want to call it. When I was dx'd - I could see myself literally wasting away. My PD mostly manifest itself on my right side and the difference in muscle mass from left to right was shocking. Consistent weight training reversed my situation and in fact I've made muscle mass gains in the past year. It's improved my spirits and physically I'm in. a much better overall place than I was a year ago. Good luck to you.

[PDWarrior1900 in reply to GregSurfs]

great suggestion! and glad to hear about your IMPROVEMENT!

[Ponieboy]

Its sometimes takes them a bit to dial in tbe meds..

[HekateMoon]

Hi New guy! Welcome to the forum. Meds react differently for everyone but if they do nothing for a long time its worth review the meds or dosage. For me its 85 per cent of the time. If weather becomes stormy my pain hits. Otherwise, they calm the tremor which is mainly on my left leg and arm and at rest. Is your tremor in both hands and at rest? Stick around, read the peoples posts. Lots of wisdom here. And some heart warming laughter at times. You are not alone. Regards. Chelo

[Pezo]

I found probably ALL the meds except TRyhexephenydol never really worked for me ... but DBS has

[PDWarrior1900]

thanks... for the last year or so all of my PD-like symptoms have remained extremely mild through my self-remedies... glad to hear that your DBS is working for you

[Nuthatcher]

100% with tremors