I can't get rid of my right hand tremor

[ion_ion]

I was diagnosed two years ago and I did not take any medication except HDT which helped a lot except the tremor. Four month ago I started C/L 3x100/25 per day to help the tremor but without luck. In March I saw my neuro who gave me amantadine 3x100 and doubled the C/L. I started amantadine 2x100mg/day but it does nothing. I taught it was foolish to go 6x100/25 C/L a day just for tremor. It is anyone who can tells me about his experience with the tremors? All the other symptoms are almost nonexistent.

[park_bear]

My personal experience with C/L is the effect is within an hour or so, and even if the dosage is not enough it still makes a noticeable difference.

It has happened before that the neurologist keeps increasing the dosage of C/L in hopes to see some effect. I am not sure there is a sound basis for that. Has anyone here experienced a delayed (by days / weeks / months) beneficial effect of C/L?

[Niggs in reply to park_bear]

Yes PB, I need at least 2-3 month for both c/l and da's to assess the effectiveness of any titration.

[jeffreyn in reply to park_bear]

About a year ago I increased my Madopar 100/25 dosage from 4.5 tabs/day to 6 tabs/day. Nothing happened for about 3 weeks, then suddenly my tremor virtually disappeared.

In the linked article, the second paragraph talks about a levodopa long-duration response, and the role of something called ΔFosB. It's on my list of things to follow up on.

lybrate.com/medicine/syndop...

[AaronS]

Intake with food doesn't help, the meds needs to be taken at minimum 30 mins b4 food, or an hour or so after

[ion_ion]

I take C/L an hour before food or two hours after. Nor C/L, neither amantadine helps with tremor. I do not have any other issues yet, except the tremor in RH. I read here many people have the tremor issue solved with one or both these two medications.

[ParlePark]

I take Amantadine only 2x100/a day for tremor in RH/Arm. Took about a month to take effect. I still tremor especially when walking or emotional, but less than prior. I also take MP but does not seem to help tremor.

[S70AWD]

C/L did not help my tremors at all, neither did the amantadine. My neurologist also upped the dosage to no effect. The doctors seem to refuse to believe that these drugs do not work for everyone. I get no results at all from these medications. My tremor is right side hand/arm and occasional right leg.

[ion_ion in reply to S70AWD]

I'm in exactly the same situation.

[Mollygirl1231 in reply to S70AWD]

Same for me. Right hand, and right foot and leg. The neurologist keeps increasing my Rytary. Doesn't help the tremor. I've come to the conclusion there is nothing that is going to work. Increasing the meds sure isn't the answer!!

[marcet]

Diagnosed in 2011 but took no drug until nov 2018 when at the time the pd symptoms were too strong (lot of tremors), as soon as i started Madopar the tremors stopped (combined with weekly b1 injection)

[healthabc]

artane + c/l does the trick for me, and I am tremor dominant, all over! I take 2 mg artane 2x/day, along with 25/100 c/l 2x/day

[Farooqji]

Take Kemadrine low dose once daily. I bet it will eliminate your tremors. I know people taking it for the last 10 years or more

[Springfield78 in reply to Farooqji]

Is this a prescription med? Thanks for sharing, Iqbaliqval.

[Farooqji in reply to Springfield78]

yes

[sharoncrayn in reply to Farooqji]

IQ: think carefully about recommending Kemadrine. "Acute dystonia induced by drug treatment can be a side effect of treatment with antipsychotic drugs and other drugs, and it may occur at an early stage of treatment.1 2 Acute dystonia is often frightening and may seriously disturb the relationship between the doctor and the patient. Therefore, every doctor who prescribes dopamine blocking agents should be familiar with the prevalence of and the risk factors for acute dystonia and should know how to prevent and treat the condition."

Sobering results from an older meta analysis.

[Farooqji in reply to sharoncrayn]

there are rare chances of side effects at low dosage (5 mg per day)

[Springfield78 in reply to sharoncrayn]

Thank you! Sounds as though I might be asking for trouble. Will pass this up!

[Jughead]

I use scalp acupuncture. I have been doing it once a week for about six years. When I started I could not hold a class. Its Chinese scalp acupuncture. Has really worked great for me.

[Sandmanliz in reply to Jughead]

How much for suggesting something the pharmaceuticals don’t pay for

[Shaky-hand]

I have right side dominant tremor PD for 9 years. C/L 25/100mg caused dyskenesia in my left side within 30 minutes of taking the tablet and would last for up to four hours and would not help the symptoms. Amantadine also did not help with tremor and caused visual changes. Ropinirole did not help and nor did Selegelene. I have tried CBD, medical marijuana, (in legal state), passionflower and skullcap. None seem to have worked. When I'm going out I take a low-dose 0.125 mg of Xanax, half of 0.25mg tablet which seems to help a little. When I'm at home and can relax I can stop the tremor completely with some self hypnosis. I do not have the tremor when sleeping or watching TV relaxed.

I now have a tremor in my left hand which is mild but this is the progression of the disease. Unfortunately the high dose Thiamine protocol did not help and at times made it worse.

[AmyLindy in reply to Shaky-hand]

Do you exercise vigorously daily?

[Stazina]

This is my husband's problem as well. He is taking Carbadopa/levadopa 25/100 3 tabs 4 times per day, it helps a little but not totally. There is a possibility that he doesn't have PD but has Essential tremor because the only symptom he has is right hand tremor. He's been seeing a Traditional Chinese medicine doctor for Accupuncture and Chinese herbs with good results. My best advice is to either get a second opinion or ask your current doctor to try Propanolol ( a Beta Blocker, blood pressure med) used to treat Essential tremor and just see if it works. I know how frustrating this must be for you. Good luck and follow up with this group about how you're doing.

[Sandmanliz]

I’ve had essential tremor in my entire life. Inderal also called propanolol and a little bit of alcohol like 1/2 glass of wine together Will markedly drop your Tremor. This does not work for Parkinson’s and can be used as a diagnostic tool I think. Difference between essential tremor and Parkinson’s is frequency of Tremor and also essential tremor mostly works with movement and Not at rest. But with essential tremor have a 30% increase chance of getting Parkinson’s and no one knows why because they’re different places in the brain. I now seem to have Alzheimer’s or Parkinson’s drives do not work for me. Now I have found out I have lymes disease and that I have to figure out if that is part of the cause. Adventure continues. So interesting to hear about Acupuncture and want to know if anyone else has had good results

[Allyn]

Try Cannabis. Pretty amazing. You can see you tube videos of PWP using cannabis and tremor stops within 5 minutes - effects last hours. I don't know if CBD oil does the same, but you don't need much cannabis.

[Hidden in reply to Allyn]

I do not get that response even with 25mg THC

[ion_ion]

I'm still working and driving and not sure if cannabis is ok for that.

[ParlePark]

I’m not on c/l. But Amantadine 2-3 times a day. Was very effective for 6-12 months. Not anymore. Tried mucuna 99% nutrivita 1100mg with matcha. So far does not stop tremors. Living with them. If mind is busy or moving hands or arms much better. I’m on B1 500 mg per day does nothing for tremors. Dr C wrote me when he was healthy and told me not to expect tremor relief with B1. Dx in 2016. RH tremor only. Right leg occasionally as well. Skin has turned color from Amantadine. If I cut dose, and I do, tremors get much worse so it’s probably working a little. Wax and wanes greatly depending on anxiety, sleep, stress etc. I’ve accepted it.

[ion_ion in reply to ParlePark]

I tried Amantadine but I stopped it after 3 months. It was giving me brain fog. Aerobic exercising or "sending the focus for a walk" helps with the tremor. C/L partially helps.

[Hidden in reply to ParlePark]

"Dr C .... not to expect tremor relief...."

[ParlePark in reply to Hidden]

Roy, Yup. That’s what he told me too!

[Hikoi in reply to ParlePark]

ParlePark,

In the early days of my diagnosis and on a different forum one long term participant talked of Amantadine. She said when it stopped working for her (which I think had happened more than once) she had a short break, a few days then recommenced and it worked again. I have not heard of this since.

[ParlePark in reply to Hikoi]

Hikoi, thanks so much for this advice and I will give it a shot today. Nothing to lose. Greatly appreciated and will advise.

[Erniediaz1018]

I take 99% mucuna from nutrivita and B1 in one hour my tremor stops.

[AmyLindy in reply to Erniediaz1018]

Wow! Are u on other meds as well, where MP is an extender of sorts?

[Erniediaz1018 in reply to AmyLindy]

I take 500 mg of mucuna every three hrs and 2 grams of B1 twice a day

[Hidden in reply to AmyLindy]

He's taking levodopa. "99% mucuna" sounds nice and natural but it's no different to taking a CL pill without the C.

[AmyLindy in reply to Hidden]

I see your point Horace99, In a sense, Sinemet is natural bc it is levadopa W / C, which simply helps it cross BBB as I understand ...

[Erniediaz1018 in reply to Hidden]

rxlist.com/sinemet-drug.htm# I respectfully disagree. In the mucuna pruriens I take there are no inactive ingredients added. Remember we are taking these substances on a continuous basis, and therefore it is very important to diminish the impact in the long term as much as possible. I see a difference.

[Hidden in reply to Erniediaz1018]

But it's not mucuna pruriens. It's Ldopa. It doesn't say mucuna pruriens anywhere on the packet. Its like calling pure nicotine "99% tobacco" or pure caffeine "99% coffee". Natural mucuna is like 5 percent Ldopa. Which means it is 95% other stuff.

I think that if you are going to be particular about the other ingredients in CL that distinguish it from simply C and L, you should be consistent and do the same for mucuna pruriens.

[Erniediaz1018 in reply to Hidden]

Ok good.

[AmyLindy in reply to Erniediaz1018]

@ErnieDiaz10 I’m glad u have a specific & simple pattern that works ! What’s your exercise schedule - I’m sure that’s part of the success?

[Erniediaz1018 in reply to AmyLindy]

Recently started walking 2 miles 3 days a week. It makes a world of difference.