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Comment by avgDev | Hacker News Reader

Dysautonomia is extremely hard to treat. Symptoms vary from patient to patient and the number of physician is really lacking.

Individuals can have symptoms like fatigue, GERD, poor circulation, neurological problems, psychological effects.

There are many causes too, certain antibiotics, chemo drugs, covid, autoimmune. It is extremely unrecognized.

A specialist in my area used to have a 1+ year waitlist. Now, he moved to a different state.

There is an exciting treatment in the pipeline. WinSanTor is developing a cream with pirenzepine. In clinical studies there was a systemic recovery of nerve damage. I have spoken to a chemist who had nerve damage from flouroquinolone antibiotics, which caused his dysautonomia and he recovered using oral pirenzepine. Keep in mind WinSanTor is targeting diabetic neuropathy in their studies but it should work for other neuropathies.

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> nerve damage from flouroquinolone antibiotics

That's exciting. I got blind-sided by that. A doctor just said he was prescribing 'an antibiotic' like it was no big deal, and I had never had issues with any other antibiotics. I was told by the pharmacist do not exercise while taking these (found out a few days later it can damage your tendons, several people ended up with snapped achilles tendons) but otherwise nothing else.

Took a single pill and within a few hours I felt fairly strong neuropathy all over my body. Took a few more days and a few more pills before I determined for sure that it was caused by the pills and not something else, and got the antibiotic switched to doxy. I continued to get neuropathy in my limbs quite often for years after that. It's mostly reduced now but I think it might have caused damage in other parts of my body, and may have helped lead to me getting the Tinnitus I've been dealing with for four years now (there's a causal link between the two).

Since they prescribed it to me the surgeon general has slapped big warnings on the pills, but I was shocked a doctor didn't think to warn me about the possibility that there could be any serious side effects (it was also the first medicine I took where I had serious side effects by it, took me by surprise).

Seems it's actually not that uncommon that people have bad reactions to flouroquinolone antibiotics, it just wasn't recognized for many years. Wish I was given an appropriate warning. I might not have risked it, or asked for a different antibiotic I know didn't have issues at least.

Unfortunately, your story is quite common. I am a mod and veteran on r/floxies, it is a subreddit dedicated to helping sufferers of these drugs.

Obviously, not every individual will suffer from side effects but even if its 1 in 100 that gets neuropathy from a single pill when other drugs are available is pretty wild.

It is extremely common doctors even fail to accept that these drugs can cause side effects listed on the drug label.

It can be really hard to even get diagnosed with dysautonomia, and absolutely it's hard to treat. A total zoo of seemingly unrelated symptoms made all the more difficult with things like brain fog and psychological impairments.

Interesting, pirenzepine is a antimuscarinic agent (M1 selective antagonist). Neatly in the class of psychopharmacological drugs.

I predominately use Amitriptyline and Modafinil as well as Low Dose Naltrexone (LDN) and a very strict diet. Modafinil is a no-go for anyone with gut issues and I don't know the alternatives very well. Modafinil in the morning and Amitriptyline at night help push my autonomic system into the sympathetic and parasympathetic states respectively. I have a very complicated rational around choosing these meds which is not fully fleshed out yet, but they worked for me and work for some others in the long covid cohort. So for now it is good enough and what I'm sticking with. As I understand the science better I might consider switching up the meds and seeing what happens. I still get PEM and would love to be able to fix that.

That info about flouroquinolone is interesting. I've discovered that I was treated years ago using antibiotics that would definitely not be prescribed today. I will keep an eye on the drugs like Pirenzepine.

Flouroquinolones are a pretty high risk drug. Over the years the warnings have been increased. If my memory serves me right, half of all flouroquinolone drugs have been taken off the market due to adverse reactions.

Generally, this family of drugs should no longer be used as first line treatment. Doctors still often use it as first line for UTI though. It carries a very high risk of damage to tendons and neurological system.

It is also the only antibiotic which is topoisomerase inhibitor, other drugs which are topoisomerase inhibitors are chemo drugs. It means that it blocks the enzymes needed to divide and regrow cells.

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