[bishoprook2]

>You see a doctor because something hurts, they look at the something -- often in isolation -- and if they can't figure it out, you're pretty much on your own.

A quick Old Man(tm) rant.

Concerning healthcare, you have to be your own project manager. They're a lot better at curing things they can see (ie. surgery), GPs have crude tools for analysis and mostly serve as gatekeepers to specialists and pharmacists. Also, GPs work mostly from flow charts and you are just one of 1000 patients they see that year. Communications between hospital departments, independent contractors like specialists or ER personnel, GPs, etc. are poor. Continuously audit procedures and drug regimes. Sci-Hub is your friend but don't overestimate the value of studies.

[foepys]

I was told recently that there is already change happening. Medical students are being told that they need to work with the patient, not on them.

Nobody knows their symptoms and illness better than the patient themselves. A doctor looks at them for 5 minutes, the patient lives with them so not including the patient in the diagnostic process is like working with a blindfold on.

[ziml77]

That's how good doctors have done it as far back as I can remember. If the person you're seeing isn't involving you in the process and trying to get the whole picture, you should try a different doctor. You don't have to stick with a doctor just because they're the closest or the one you happened to choose first.

[arpa]

there are also ideas about patient empowerment (since last century). Medical community is not the most flexible, but we'll get there.

[chewz]

> Concerning healthcare, you have to be your own project manager.

+1 for that. 10 years ago I had misdiagnosed cancer for 3 years despite seeing lots of doctors. The symptoms were there but none of the doctors connected the dots.

Since that experience I am coming to the doctors prepared and with defined expectations. And I engage them in well defined Q&As which have defined goals.

I am taking care of my 90 years old Mom now and I do the same - I read the medial literature and suggest to the doctors what results I am expecting. To my surprise most doctors are quite keen to co-operate.

I have improved my Moms quality of life suggesting replacing sleeping pills for mild ant-anxiety pills, and getting anti-depressants that work well for osteoarthritis pain.

[BoxOfRain]

As someone with a rare neurological disorder that hadn’t even been clinically recognised when I contracted it (it was seen as a weird subset of migraine in the few places it’d been studied systematically) this is fantastic advice. I also had the joy of being put on SSRIs only to find out they interact horribly with my condition and there’s many reports of this that doctors for the most part seem totally unaware of. I won’t touch anything of the sort ever again as a result, I can only describe my experience as a bad trip that lasted around nine months.

[elric]

As someone who gets weird migraines, I can empathize. Can you elaborate on the nature of journey? Much appreciated!

[BoxOfRain]

No worries! It started when I was about fifteen or so, I noticed the sky looked "wrong" during a PE lesson. I'd developed what looked like TV static over my whole vision along with seeing trippy patterns in things like repeating tiles, things which came and went but were always there in some respect. I also started having weird dissociative episodes where everything felt like a dream and seemed to lack tangibility. Realising that something was wrong I asked my doctor who told me to go to an optician, who found no sign of eye disease. I went back to my doctor and I saw an opthalmologist who also found no eye disease, and then a neurologist who didn't really know what to make of me. He did a few tests including getting me to stare at some trippy patterns with electrodes glued to my head, then said words to the effect of "we don't really know what this is, but it's unlikely to be anything bad so just try and imagine it away". I could have had a brain scan at this point but I had braces on my teeth at the time which would have made it an enormous faff, so it wasn't seen as a good risk/reward ratio.

Years later when I was a university student it got suddenly worse. I remember the exact day, I had an awful fever from some bug I picked up but still took some painkillers and went out drinking with my housemates as I wasn't sleeping anyway and figured the good old "miracle of the sesh" might make me feel less grotty. The next day I went to lectures and couldn't read the board with the slides on it. My visual symptoms had got much worse, I've never really been able to account for why (whether it was the booze, the fever, or just chance) and new ones had developed too, including a permanent, painful pressure on one side at the back of my head. These acute episodes got increasingly worse until my final exams which I bombed spectacularly because while I could just about read the letters and words, they wouldn't really form meaning properly*. This was terrifying, and I quickly sought medical help.

The problem was the NHS waiting lists for non-urgent things would have meant I'd have drop out of uni indefinitely rather than simply re-sitting my third year so I had to go private, which I was very fortunately to be able to do. I saw another barrage of opthalmologists, neurologists, and other professionals who didn't really recognise what was going on until I finally saw a neuro-opthalmologist who diagnosed me with visual snow syndrome, a recently recognised disorder that's believed to happen when the brain fails to filter out its own noise which then "leaks" into your conscious perception. It turns out I'm not actually hallucinating, what I'm seeing is the inherent noise of the brain's visual system which is actually kind of cool in a sense, it's a bit of a draught through the doors of perception! The cause of this isn't actually known but visual snow produces characteristic markers visible on an fMRI scan and it's theorised to be caused by a localised problem with metabolism in certain areas of the brain.

The problem after that was that anxiety disorders are often comorbid with visual snow (perhaps unsurprisingly, given the nature of the disorder) and I'd spent the last two years or so convinced I had some deleterious brain disease - given the rapid decline and painful pressure in my head I don't think this was an unreasonable fear. I was put on SSRIs because of this, which rather like a Faustian pact made everything infinitely worse very quickly. I'm not sure of the scientific nature of the interaction between jacked up serotonin levels and visual snow syndrome but the subjective nature is almost literally Hellish. Not the Calvinist fire and brimstone Hell, but the kind of Hell that's a total seperation between oneself and everything that is joyful and light in the world. I don't have the literary skills to do the description justice, but the "Life in Death" of the Rime of the Ancient Mariner or J.K. Rowling's "Dementor's Kiss" are both pretty close in different ways! I cannot stress how unpleasant this was enough, I honestly struggle to express how bad it was without coming across as melodramatic. Other visual snow patients prescribed SSRIs have anecdotally reported similarly unpleasant worsening of their disassociative symptoms, but as far as I know this isn't currently acknowledged in medical literature on the subject.

I managed to pass my degree with second class honours, and I went cold turkey on the SSRIs. I also managed to have an appointment with the UK's leading researcher on the disorder, which was very helpful! Quitting SSRIs was a very punishing process, but over the course of about six to nine months (!) I slowly began to regain everything the drugs had robbed me of. I sought out therapy because of my experience which has been extremely useful, and I've made adaptations to my life which allow me to live fairly normally. The chronic pain is effectively managed with CBD (luckily it's legal in my country which is otherwise utterly backwards on the subject of cannabis!) and the other chronic aspects are effectively managed using adaptations like close control of colour temperature and certain fonts to make programming easier (monofur is my current choice). The acute episodes still happen and they're still grim, but they've cost me little enough in sick days I can still be gainfully employed as a programmer. While the acute episodes are grim while they're happening, the only disability I face 100% of the time now is my lack of night vision (so I'll never be able to drive in the dark), the photophobia (I'm always in sunglasses even on cloudy days), and general sensory overload issues.

*this is consistent with the fact the lingual gyrus is implicated in visual snow, a part of the brain known to be involved in processing vision, especially written language.*

[elric]

Thanks for sharing. That's one of the scarier and more detailed descriptions of Visual Snow I've read! The SSRI complications sound truly frightening.

It seems like some research into Visual Snow is being conducted, so at least some people are starting to take it seriously.

We're finally getting some serious migraine research as well, and I suspect that at some point in the future, we'll finally figure out that much of what we thought we knew about migraine is wrong. I can't remember who was doing the research, but some neurologist claimed that migraine is a consequence of some neurons being "too trigger happy", meaning they fire when they shouldn't. I suspect that's where the link with VS is.

I wonder whether the root cause is going to turn out to be a metabolic problem in the cells involved, or whether it's a case of some neurons being too sensitive. If it's the latter, neurological rehabilitation might be a possible treatment avenue. Similar to some migraine patients greatly benefiting from light therapy at specific wavelengths.

If you haven't already, check out /r/visualsnow on reddit, people occasionally post research, recruit volunteers for studies, and generally commiserate there.

[BoxOfRain]

No worries, and thanks for the advice about /r/visualsnow. I hope that advances in the understanding of one condition ends up helping both of them because that link definitely makes sense!