I've needed to write a long post (or a few separate posts) for weeks now, but I'm just too busy. I'm going to try to make time to do some thorough updates on my situation soon, but I have an immediate question:
I can't tolerate Sinemet (tried it from Jan. 16-Mar. 10, 2021), so my neuro (MDS) wants me to try Amantadine for tremors in my left side (I seem to be tremor dominant, diagnosed in 2018). I've been using Barlowe's Indian Brown Mucuna 40% since Mar. 11. It helps the rigidity and dystonia in my left arm/hand quite a bit, helps the bradykinesia (arm/hand) a LITTLE, but does almost nothing for tremors (neither did the Sinemet).
Has anyone here experienced significant tremor relief with Amantadine? What about side effects? I'm pretty freaked out by the list of possible side effects after my horrible experience with Sinemet (nonstop nausea/no appetite/weight loss, constant headaches, extreme fatigue, eye pain/blurry vision, massive hair loss). I really need some relief from the tremors, but not if it brings more problems than I already have, as I'm generally doing pretty well overall at age 55 and 3+ years in.
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1LittleWillow
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Hi LittleWillow and sorry to hear about your tremors bothering you. I have been in a similar situation countless times during the almost 10 year journey. I am taking Amantadine as well as part of my “regimen”. It’s really a medication cocktail as such.
No, I don’t think I got any relief from this drug for tremors. I have been prescribed this for my dyskinesia. It’s really the only medication there is for dyskinesia, according by my MDS.
Good luck with your search for a solution and I am sure that you will find something with your doctor’s help.
Hi LittleWillow. I am also 55 and tremor dominant. I had nonstop nausea/no appetite/weight loss for months as I titrated up to 1 whole pill 3 x a day. It took months, but when I was able to tolerate the meds, my tremor virtually disappeared. I know you are asking about Amantadine but just in case you wanted to try Sinemet again, I wanted to give my experience. Good luck
It certainly works for my tremors. I am only 1.5 years in, so my other symptoms are not dramatic, but it has helped tremendously with the anxiety as well
How much c/l are you taking? My tremors seemed to increase when I increased the dosage. Any suggestions I'm on 11/2 cl(25-100 mg) am,1 pill in the afternoon and bedtime. It has helped with stiffness but no relief for tremors. When I share that with the neurologist he said to stay at that dose. No relief for the tremors. Another neurologist told me cl may improve one problem and make the other worse. Increasing the dosage could result in relieving the tremors but bring back the rigidity and stiffness. Any suggestions
I take 3 x 25/100. 6:30 am, mid day and dinner time. At that dose my tremors are completely under control unless some unexpected excitement or anxiety creeps up.
I am on 11/2 c/l am 1 afternoon 1 at night for the past couple of weeks. Maybe I need to give it more time. How long have you had Parkinson's? What were your symptoms? Have all of them been relieved by the Carbidopa levodopa?
Sinemet did nothing for my tremors. I also have bradykinesia, rigidity, and mild dystonia. I had lots of other symptoms, but those have been eliminated (for now) with high-dose B1 and Mannitol. I'm not taking any prescription medications currently. I only use Barlowe's Indian Brown mucuna 40%.
How much b1 and mannitol and mucuna do you take and how do you know how to use it? Trying not to go on medication also have rigidty.and degenerative arthritis and am being tested for lumbar radicular syndrome
Within two hours of taking my first amantadine, I had a severe reaction that took me to the floor. I had great trouble breathing and heart racing. After 5 minutes I recovered but was just about to call 911. Very scary.
I also tried sinimet and Rytary. Neither helped with any symptoms but only developed bad side effects.
I am 14 years into the joys of PD. Taking a lot of Sinemet + mucuna, Barlowe's is one of my brands as well. Close to 2 grams/day every 2 1/2-3 hours dosing. Recently started Amantadine and the minor dyskinesia that I had is gone with 1 100mg pill. No real side effects, but think it is worsening my OH-orthostatic hypotension. Experimenting with 2 100mg doses of Amantadine and cutting Ropinirole ER from 4mg to 2mg in hope of OH improving. I was also hoping for tremor improvement but only dyskinesia affected.
As far as the nausea, have you split the Sinemet when you take it with mucuna? I do that sometimes just to get the carbidopa as inhibitor for the levadopa from the mucuna to get to my pea brain and do its thing.
Have you tried eating a few crackers with your Sinemet, that could help with nausea. Maybe try dissolving the Sinemet and mucuna in a few ounces of warm water or green tea, mix and drink. I do that sometimes for faster on time, maybe it helps with nausea, you never know.
So you are taking close to 2gms of Barlowe's ? That's about 7 caps a day ?Just about what I take. I read somewhere on this site that 2 Barlowe were equal to `1 Sinemet.
Glad you checked in as we seem to be in the same PD time frame and location.
My daily regimen is one 25/100 sinemet with either 100 mg of mucuna, 160 mg, 200 mg or with the Barlowe's 260 mg (6-7 doses/day). I usually only take the Barlowe's for my dinner dose as it's my main protein meal and since I suffer most on the next dose from the protein battle (3 hrs approx) later, the more potent 260 mg buys me a little more time to digest. I will use Barlowe's more often if I am at an all day event or the like.
While I do take about 2 grams of levadopa daily, I just add the 100 mg of the sinemet to the 260 of say the Barlowe's. Since I take it with the Carbidopa, not sure why 2 Barlowe's 520 mg would equal 100 mg of sinemet. If anything seems like the other way around. Just assumed all IR levadopa mg, taken with Carbidopa is the same.
Do you take yours with 25/100?
Thought I sent you a question about Dr. Fazl moving to Seattle and other options you might have as my neuro retired. CCL answered it and said he's leaving.
Hi, I have very little energy, so I'm always brief, unfortunately . I took myself off c/l act 2 yrs ago due to side effects. So far I'm just on macuna till I find a new doctor.
When I tried just taking mucuna it did very little without the carbidopa. I know you are in between doctors, but maybe get a script for just carbidopa and try it with the Barlowe's. If you want to PM me I can tell you of the neuro I saw first time on Tuesday if you are interested,
Hi, You are very kind. Yes, I would like your impression of your new doctor, You know Dr Fazi probably wouldn't have been a good match for me anyway. I checked his bio and saw that FUS was his speciality, and he was a neurosurgeon... I'd have probably worried that he would have wanted a DAT scan, and a ton of tests which I don't have the energy for. Can you guess that I'm a bit doctor phobic
Our daughter takes Amandatine and has had good results with controlling the tremor. But has developed the livedo reticularis……looks like a red lace effect on legs and arms. The doc wants her to stop it but it works so well for her tremors, she doesn’t want to. Do t know what they will come up with.Good luck…..it seems everyone reacts different to the meds. My husband at 83 has just been diagnosed with PD, has had essential tremor for years but it’s gotten worse and he has some of the other physical symptoms. Tried Sinemet but made him shake worse, so now the doc wants to try Requip. Hasn’t started it yet but will this next week.
LittleWillow, yes, this PD-medication thing really is a balancing act. I, too, am going to offer a comment about Sinemet in case you decide to try it again (even though your question is about Amantidine, which I've had no experience with.)
One of my first symptoms was a constant left hand tremor, and Sinemet completely stopped it. (However, each one of us responds differently to different drugs.) The first few times I took Sinemet, I felt extreme nausea and a literal pain in my stomach the second the tablet landed there. I reasoned that maybe the entire pill in one spot was too much of a concentration of the drug for my stomach. So, I started dissolving the pill in a small amount of water and then drinking it. That resolved the nausea and stomach pain problems.
I am 10 years post PD diagnosis. I still dissolve Sinemet in a little water first, drink it, and follow that with lots of water. Or, sometimes I chew it and wash it down with lots of water. Still no signs of tremor as long as the medication is on and still no nausea or stomach pain when I take the pill.
(I don't want to paint an entirely rosy picture of Sinemet and me. The dyskinesia is now driving me nuts. And because I had to cut down on the quantity of food and the amount of protein that I eat, both of which cut down on the effectiveness of levodopa, I've lost a lot of weight. )
Let me know if you find anything that works for tremors. Mine occur sometimes resting, stressful situations, and when I use my non dominate hand to do something I used to do with my right hand. I'm not on any meds just supplements. Thanks
1/4 tablet artane has worked well for me, tremor dominant. I take sinemet as well, which helps my tremor somewhat, but the artane nailed it. It also has some potential side effects, but all the meds do-
I take amantadine 2x/day and notice no relief at all, but fatigue as only side effect.
I use 100mg capsules 2x daily (can do 3x if I want as prescribed), and helps a lot for my LH tremor, not as much as when I first started them, but still significant. I've been taking them for over 3 years, & have adjusted to them, no side effects that I can point to from them.
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