I am 48 male. I started to have right hand tremors over three years ago. I was diagnosed with essential tremors due to my family history. But after a year my neurologist diagnosed it as PD. He tried Sinamet but didn't help with tremors. Propannol helped with tremors. He also tried Artane which helped a bit but there were a lot of side effects. Neurologist referred me to MDS who tried higher dosage of Sinamet but didn't help with tremors. He sent me for DatScan. I had appointment last week and DatScan confirmed the PD diagnosis. My only main bothering symptoms is hand tremors. MDS prescribed me Amantdine and asked me that it is up to me if I want to take Sinamet. I read about Amantdine and it seems to help with dyskinesia. My question is that does anyone take Amantdine for tremors? As I told him that propannol helps, he asked if I want to take it regularly instead of as needed. I said yes, but after checking my pulse which was low (may be because I do a lot of running) and he decided not to prescribe.MDS asked me to stay active and do exercise for which I do normally running 3-4 days a week. My other issue is acting up in dreams. MDS asked me to take on the counter Melatonin. He didn't prescribe anything. Is it normal to take melatonin for acting up in sleep? Does it work? Also, does anyone know how to know how much damage is done in the brain. I asked MDS and he said DatScan is qualitative and not quantitative. It can't measure the damage. Is there a way to know the % of damage.I know that I have a lot of questions. Thanks for your help.
DatScan and diagnosis : I am 48 male. I... - Cure Parkinson's
DatScan and diagnosis
So you have REM Sleep Behavior Disorder. Me too. Sorry you had to join us.
You should join the Zoom calls MBAnderson is so kind to host. Lots of nice people that have literally tried EVERYTHING (including focused ultrasound, which might interest you).
You WILL be welcomed to these calls: us02web.zoom.us/j/833522248...
Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
Sundays, 11 am – 12 PM-ish, US CDT.
Thank you Upright_Bolt!
If you would like to see what I have done to reduce my REM Sleep Behavior Disorder, I have a blog: rbd-pd-protocols.blogspot.c...
Thanks! I have this for many years. I used to get scared in my dreams and start talking. I was on and off and I didn't know that it is REM and it is precursor to PD. I didn't pay attention to it as it wasn't that bad and wasn't bothering me much. Not sure if I could have done anything if I would knew but it will always with me perhaps I should have paid more attention to it and I might have delayed PD. Thank you for sharing the information!
Well don't kick yourself. If there was something you could have done, no doctor would have known.
I'm glad you are taking Melatonin instead of Klonozapam. I think there ARE things you can do to make things worse.
My RBD is very mild now. I have not fallen out of bed for years. Maybe that is my diet and supplements, or maybe it is just because I retired and destressed (and stopped drinking). I should know if my protocols are working in about 10 years 
You are probably trying to assess the damage already done so that you may focus on saving what is left?
It doesn't matter how extensive the damage. You will not get any benefit from knowing the current level of damage. What is done is done. Your actions for the future should not depend on the extent of damage done. Start now and slowly build yourself.
Best thing you can do is keep up your running and pay attention to what Bolt recommends.
Thanks everyone! Any suggestions how to control Tremors? That one is most bothering symptoms.
I was dignosed with PD ( after DATscan) at 48 or 49 too , same sort of symptoms , just shakey in my left hand ...And also similar with Leva Dopa , diddnt really control tremors , my face would contort with dyskenesia , ok , so now I am sat here at age 57 .. no shakes , occassionally they re- emerge , but it WAS REALLY BAD , I mean I couldnt hold a glass of water etc ..... I have had DBS and its literally given mev back my life ..now I take NOTHING pill wise ... the only one that worked for me , r.e tremors was TRihexephenedol, which is actually very dangerous.....r.e Melatonin .. phhffftttt , same again they tried me on it for sleep .. diddnt do a damn thing
When & where did you have DBS?
Thanks for sharing. Any side effects of DBS?
None , I was expecting a 'Frankenstein' moment when they switched it on , but I diddnt feel anything, it took a bit of trial and error to get right , but now you wouldnt know theere was anything wrong with me
im similar to you. Diagnosed with a hand tremor at 44 and had it now 2 years. Only propranolol helps. Im trying keto now a month. Seems to help with everything else but tremors are about the same, might be a bit better but could be Imagining it. Maybe more time will tell…when I meditate I can reduce them and they appear to be lower during/after exercise and when busy. They are gone when sleeping and higher when interacting with people. I measure it on my Apple Watch using strivepd…
Thanks for sharing!
p.s ..Cannabis oil for REM sleep disorder ( I have that too ) , but THC sorts it out nicely
hello I’m sorry for what your going through. I’m no doctor but a male coworker of mine had tremors for years . He went to all these doctors with no explanation of why this was going on. One day he was delivering mail and the man that lived there was a chiropractor. The man said: I notice you have a tremor and he said yes , I’m not sure why the doctors here can’t help me. He told him your lacking certain minerals in your body. He told him to go to the health food store and buy these vitamins and minerals and he said within 3 weeks his tremors completely stopped. I’m not sure which minerals he told him to get but it cured him. I’m not saying that’s what yours is but it just reminded me of your symptoms: I hope and pray you find answers.
Let me know if Amantadine helps with your tremors. I am in similar situation. Some articles seem to indicate amantadine helps tremors and others not so much, or say mostly for dyskinesia,
I was diagnosed several years ago. First the docs tried Propranolol. Next I was put on sinemet and ultimately put on Rytary, a longer-acting form of Sinemet. I asked for a DatScan but it wasn't available, Eventually i had the scan. MY only sign has been a tremor. For several years now, a tremor with no other signs, The DatScan says I have PD. So maybe in time my condition will worsen. But for now I'm stuck in this Twilight Zone of being diagnosed with a condition I don't YET have.
How are you controlling the tremors?
Just Rytary, two capsules taken three times daily.
Hello, I'm 57 years old, diagnosed with PD in 2002, also live in Canada. My main symptom is left hand tremor which sometimes migrates all the way up into my shoulder. I thought about taking Artane .. which side effects did you experience?
Main side effects were dizziness, short term memory loss,near vision problems and mouth dryness. The short term memory loss amd near vision problems were really concerning for me. Initially I thought my short term memory loss is because of PD but it turned out to be side effects of Artane. After I stopped Artane , my memory and vision problems were gone. Be careful when you take it. If you experience these issues then stop it.
Do you have any other symptoms? If no, then can you share what are you doing to slow or stop the progression for so many years?
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