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Comment by spike021 | Hacker News Reader

I have essential tremor. Hearing about new treatment options is exciting. At one time my pediatric neurologist basically said the only kind of treatment had real nasty side effects, and most recently the prescription pill I tried also presented side effects that weren't worth it.

I'm going to look into this when I can. would love to try it if it's financially feasible.

ETA: Looking at their website and all the models in the photos are older people...

As someone diagnosed with ET since high school that's kind of funny.

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My elderly mom has (had?) familial essential tremor and did two ultrasound brain lesion treatments: one for each hand.

The treatment was very effective. She went from not being able to eat soup without making a mess and barely being able to use touch screens (let alone write) to no visibly noticeable tremor. They had her draw a before and after spiral and it was an amazing improvement.

But the side effects were rough. She had trouble walking for weeks after the first treatment, though it eventually resolved with time and physical therapy. She had speech (cadence, slurring, word-finding) issues after the second treatment that she's currently doing therapy for.

It was a really big quality of life improvement for her but I don't know if she would have done it if she were not retired or didn't have a strong family support network.

The guy they describe as their pilot patient was much younger.

Apparently (per neurologist) onset is basically bimodal—teens or so and around 60.

Has anyone told you to avoid beta-carbolines in your diet?

Please don't do this kind of thing. It is incredibly rude. For me it's migraines - anytime I mention them I am absolutely flooded by people saying "oh, have you tried X? have you tried Y? All you need is celery juice!" I've been having migraines for 30 years. Believe me, I know more about them than you do.

Not everyone does research like you. And it is definitely not rude to ask have you heard about x and your thoughts about it, especially if you tried something and it didn't work it could spark a good discussion.

i think what's going on here is similar to why celebrities are often curt with people that come up to them. Some celebrities are actual douchebags, but others are not necessarily so but just get so many people coming up to them and saying the same thing to them.

It comes down to two mismatches: first being the famous person's own patience, which is just a normal amount, but instead of usual number of others going up to them now it's 100 or 1000x the number of others.

The second mismatch is the information asymmetry: the famous person him/herself knows that they have gotten 100x people going up to them and saying / asking the same thing, and they know that they will continue getting this for the rest of their life, so they respond with annoyance, which is completely understandable. However, the average person going up to them isn't gonna think that many logical steps and realize this; they're just saying "oh cool, it's a celeb, I never see celebs. Let me try to talk to them!"

Seconding this (also migraines, also someone who works in the healthcare advertising space).

No, I did not try "this one weird trick that doctors hate" and I'm not going to. I'm going to do my own research, I'm going to speak with medical professionals and specialists who understand the MOA of the treatments they're discussing (and what "MOA" even means) because I'm an adult, thanks.

To anyone saying it's not rude: It is when it's just "have you tried X?" because, who the fuck are you? Are you a doctor specializing in my disease? Are you also a sufferer of my disease? Are you a caregiver for someone with my disease? No? Then go away "dude who read something one time".

You want to wander in with unsolicited medical advice, you need to show me that you're not just the same losers I've dealt with my whole life saying "oh man, I have a migraine" when they mean an extremely bad stress headache. I assume everyone with chronic illness has had the same well-meaning gibberish.

It's great that you want to connect with me, but weird that you want to do it about my disease. It might even be a good discussion. But it never is if the lead is "have you thought of this?"

> because, who the fuck are you? Are you a doctor specializing in my disease? Are you also a sufferer of my disease? Are you a caregiver for someone with my disease? No? Then go away "dude who read something one time".

That’s a bit hostile. I happen to have been following research around beta-carbolines for almost two decades and am curious whether clinical practice follows that research. My replies may be curt simply because I am writing on a mobile device.

It is interesting that you should decide to die on that hill, when the parent poster clearly did not have an issue with my question. It was neither directed at you, nor did it concern your disease.

Are you certain of your own motivations?

> I happen to have been following research around beta-carbolines for almost two decades and am curious whether clinical practice follows that research.

So you’re just clueless here, wow what a rude question.

Are you a bot?

That’s a weak follow-up, the first question was a solid 9 on the asshole scale. I’d have trouble justifying a pity 3 on your second attempt.

Whatever.

Have some conviction. You don’t need to respond, but going limp isn’t any way to live.

This is not the forum for pissing contests.

If you feel that way, don’t start pissing contests.

Kinda narcissistic to shift blame like that.

As someone with a different chronic ailment I've come around more toward fuck the doctors than the forum posters. The only relief I've ever gotten after seeing literally dozens of doctors over the last 10 years has come from tips from forum posts and more recently LLM chats. Doctors tend to stick with whatever standards their insurance or the FDA has come up with and then just throw up their hands if that doesn't work. You do have to be careful of all the quack influencers and hucksters out there. But in my experience you have to become your own expert, read all the science papers, follow every lead, and force your will around the healthcare bureaucracy. I'm currently importing quality of life altering meds from Indian pharmacies that my doctor refuses to prescribe because it's off label. YMMV.

Sorry bud, feel bad for you. Ignore the f*ckin morons.

If you often feel that way, the problem may not be the ”f*ckin morons”.

I've tried multiple things over the years with no improvement.

Are there any studies with results showing this as a suitable way to reduce tremors?

There are some indications that specific beta-carbolines (harman/norharman) could be a causative factor in genetically predisposed people. Coffee, tobacco smoke and fried/grilled food are the most significant sources.

See e.g. https://link.springer.com/article/10.1007/s12311-015-0751-z

OK but as a high school student I never drank coffee or smoked and I wasn't the type who eats out/unhealthy foods often.

My grandfather on the other end of the spectrum and who also had it didn't do those things either.

Well, one adjustment is that it looks like any high temperature process resulting in a maillard-type reaction can elevate these. So I suppose roasted vegetables are going to have elevated levels as well. Darker crusty breads more than lighter breads, etc. Smoking and coffee are higher risk factors than food, although idk if that's accounting for rate/volume of consumption.

A (very) quick look at this says that the compounds are doing the damage, but the real problem is that some people don't metabolize them as quickly as others, and they build up. These are neurotoxic at higher concentrations and cross the blood-brain barrier, so if you aren't clearing them out then I guess you're exposing your cerebellum to more of them for a longer duration.

Studies suggest that people with ET have higher levels of these beta-carbolines in their blood than control patients, in some cases (like familial tremor) even if their diet and lifestyle doesn't look it should be risk.

Do you see any meaningful change in symptoms while in a fasted state?

As in, 36 hours+ without food (just water, electrolytes if you want), do the symptoms improve or worsen?

I've never tried a fasted state like that unfortunately so I couldn't say.

My pediatric neurologist at the time actually suggested trying some wine (with adult supervision of course) because some people seemingly respond well to that. But I've of course tried all kinds of alcohol by now years later and none seem to do the trick.

Another doctor more recently also suggested trying CBD (non THC) but no obvious improvement from that either, although I really only ever tried one type of CBD supplement and maybe it wasn't the right dosage.

>My pediatric neurologist at the time actually suggested trying some wine

And people still believe anything doctors say.

Alcohol is not a good treatment for anything except acute methanol poisoning, and maybe as a topical disinfectant/antiseptic.

Long-term alcohol use will cause tremors, and many alcoholic beverages contain comparatively large amounts of beta-carbolines.

It's crazy how after this whole thread I think you are missing the point but that's the internet for you.

Which point am I missing?

Fwiw I support offering such suggestions. It's a longshot and fraught with potential for annoyance, but worth it for the small chance of a big upside.

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