How quickly did/is your tremor progressing?
Not very quickly at all. I have “late onset” Essential Tremors. They became noticeable in my early-40’s. 30 years on and they have ruined my poor cursive handwriting and my printing is not great shakes. I have problems with (art) painting, and drawing is impossible or just about so.
Do any supplements help? (have read about GABA, Passion Flower et al, are those genuinely helpful?)
Only andocially. So far I’ve not seen any study on dietary supplements, natural or otherwise. GABA may help, as there exists some research to suggest that GABA and Purkinje cells in the cerebellum interact but the mechanism is not yet well understood.
Note: Alcohol is a GABA antagonist which suggests a causal relationship in some people who have Ethanol Responsive Essential Tremors. Yet another area for research in Essential Tremors.
Do any particular diets help? (I'm already vegan, but heard good things about gluten free, keto etc)
A few months ago, I started a deep dive into Essential Tremors and the medical research done in the past 10 years or so. Most of the information pre-2010 is either: a) incorrect, b) flawed, c) biased, d) out of date due to more recent studies.
At present, I am overwhelmed with the scientific literature and so I must ignore any and all anecdotal information. Having said that, there doesn’t seem to be a scientific basis for supplements or diets that are beneficial for Essential Tremors. The Mediterranean Diet is quite healthy and is as good/better than most.
My advice is to eat healthy.
Mine is a fine tremor - visible, annoying, but almost like vibrating, what's yours like?
My tremors are mainly in the forearm. The type referred to as Forearm Pronation Supination (FPS). i.e. the tremor is a rotation of the forearm. This tremor kills any fine motor movements in the hand as the muscles of the forearm are much stronger compared to the hand/finger muscles. This tremor makes eating soup a challenge.
In the only study of tremor locations I have read, the Wrist Flexion Extension is the strongest tremor followed by the Forearm Pronation Supination tremor. If you have either/both of these tremors, your fine motor skills will be close to non-existent.
The bad news doesn’t get better. Somewhere around 95% of the Essential Tremor population’s tremors are in the forearm-hand!
Have you tried to draw a spiral? You will see shakes at either the 10 o’clock - 4 o’clock diagonal or at the 8 o’clock - 2 o’clock diagonal depending on whether you are left hand dominant or right hand dominant.
Is there an app to monitor progression? Can't seem to find one
I’ve not seen any apps to monitor progression. There are several published papers on using a cell phone to measure tremors and one study to use the data to differentiate between Essential Tremors and Parkinsons’. It’s a good idea. I’ll add it to the ‘to do’ list of the ET working group I am a member of.
Which drug is the most effective?
The sad fact about drug treatment of Essential Tremors, is that drugs don’t work for about half of us. The front line, “go to” drug for the treatment of Essential Tremors is Propranolol which I understand is no longer prescribed for high blood pressure (hypertension) as there are newer and better drugs available. If you have asthma, avoid Propranolol. Get your primary care physician to prescribe Atenolol.
Propranolol works for about 50% of the Essential Tremor population. It can temporarily reduce the amplitude of your tremors by 50% to 70%. Propranolol, the non-extended release product, starts working from 30 minutes onward for 4-5 hours. The extended release version is a once in 24hr dosage. Propranolol is an “on demand” drug. There is no ramp up period nor is there a weaning off period. If it works for you, just take it when you need semi-steady hands.
If Propranolol doesn’t work for you, your doctor may prescribe Primidone.
Taking Primidone, a barbiturate anticonvulsant is a bit more complicated. You must ramp up the dosage from a low starting level to a dosage that is effective in suppressing your tremors. If you decide to quit, you need a period of time to wean yourself off this drug.
Exercise makes it worse in the short term sure, but does building strength genuinely help with the tremor in the longer term? I'm scared of exercise atm because of it but will do it if it will help
Although exercise does not directly affect Essential Tremors, exercise does contribute to a healthy lifestyle and that is generally beneficial. It could lead to less stress and that would be very positive for your Essential Tremors.
Is a small glass of wine each evening helpful or not worth it?
A small amount of alcohol, 1 beer, a small glass of wine, or 1oz of spirits does help for about 50% of the Essential Tremor population. This is referred to as: Ethanol Responsive Essential Tremors. This response can last up to 4 hours. “The long-chain alcohol 1-octanol has been demonstrated to effectively alleviate tremor symptoms in ET without causing intoxication or other clinically relevant adverse effects” cite Just don’t fall into the fallacy of “if 1 drink is good, 2 drinks is better”. The hangover the next day will exacerbate your tremors.
How do you handle the anxiety of the tremor??! Does it eventually pass/you get used to it?
I am quite aggressive about my Essential Tremors and have two different responses depending if the person is condensing or not.
My nice response is to joke about my Essential Tremors; “Oh my DT’s (delirium tremens) are showing through again”.
My mini-Essential Tremors lecture. I assume the “wing beating position” with my left arm which usually provokes my FPS (Forearm Pronation Supination) tremor. “Oh see, there he is! It’s just Essential Tremors. Nothing I can do about it. I can take a beta blocker but I have to watch my BP. Been like this for the past 30 years. It’s getting a bit worse the older I get.” About this time, I will lower my arm to stop the tremor demo and try to inject some other topic into the conversation.
Do you have any pain? I.e. nerve pain?
Yes, but it’s not related to my Essential Tremors. I don’t have any numbness either.
DO YOU WORRY WHAT WILL HAPPEN IN THE FUTURE?
For me, after 30 years with Essential Tremors, the future is now. My tremors are about twice as bad as they were when I first “discovered” them. It has reduced what was my very poor cursive handwriting to illegible and my printing to near unreadable. Freehand drawing of a smooth curved line is impossible which makes all drawing impossible which is my greatest loss.
Prognosis of Essential Tremors is not well studied. I would like to add the hopeful “yet” but these types of studies take 5 to 10 years or more to yield results and in a world of “publish or perish” our best Essential Tremor researchers cannot afford this type of intellectual investment.
The only definitive statement I have seen regarding the prognosis of Essential Tremors, suggests that the tremors get worse as you get older and there is cold comfort in that.
(Please note: This information should not be used as a substitute for medical treatment and advice. Always consult a medical professional about any health-related questions or concerns.)
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