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adamzerner comments on I'd like advice from LW regarding migraines - Less Wrong Discussion

10 Post author: Algon 11 April 2015 05:52PM

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Comment author: adamzerner 12 April 2015 05:40:06AM *  1 point [-]

It seems to me that you've exhausted the traditional approaches to diagnosing and treating your issue, and that you're unlikely to stumble upon a solution yourself. My guess is that your best bet is to figure out who the real specialists are and see one.

I also suspect that there are a lot of tests that could be done that your doctors haven't ordered due to costs, and that would be useful. Depending on your financial situation and how much this means to you, perhaps you could make it clear to them that you would like more extensive testing and are willing to pay for it. Similarly, it might be worth paying them to tighten the feedback loop.

Normal doctors can often be incompetent. Example: I've been having problems with my achilles for over 6 months now. I've since consulted with a foot specialist, two general practitioners, and two physical therapists, none of whom offered me good advice. In doing some research online, I've come across a treatment that has been shown to be very effective and has a ton of studies supporting it. I had prodded all the doctors to tell me all of the treatment options available to me, and none of the mentioned this. Moral of the story is that sometimes there exist good options that your doctors don't know about. I had similar experiences with DSPS too.

Brainstorming

Normal Options:

  1. Figure it out yourself.
  2. Normal doctors.
  3. Specialists.

Other options:

  1. As Shminux mentions, "MetaMed used to offer custom medical research and advice, but they appear defunct." Too bad. Maybe similar services exist.
  2. Come up with a better way to incentivize your doctors. Maybe you could figure out how to motivate them to actually brainstorm, do research, explore alternatives, quicken the feedback loop etc.
  3. Look into what the available clinical trials are. Maybe reach out to Neurology departments at universities.
  4. Use Amazon Mechanical Turk to pay people to research what your options are for you.
  5. Perhaps there are some sort of organizations for people with migranes that you could reach out to.
  6. Take the time to really educate yourself. There are different extremes to which you could take this ranging from "just read a handful of lit reviews" to "studying neurology more formally".
Comment author: [deleted] 14 April 2015 08:26:19AM 0 points [-]

This is interesting. On Reddit and places like that, the go to advice is ask-your-doctor. Assuming doctors know the most / best. Well, they are supposed to, but it happens rather regularly that ten minutes of googling gives me treatment ideas that none of the doctors I know have heard about and they are proper clinically tested ones. I think very often they don't keep up, just sticking to what they learned decades ago. (Is that even possible? Isn't there such a thing as mandatory journal subscription?)

It feels weird to know things a layman that experts don't.

For example I have all sorts of posture problems and upper traps pain, and frankly none of the docs I know even heard about anything like this (admittedly, it is not a good example of clinical testing as this isn',t still):

https://www.t-nation.com/training/de-constructing-computer-guy-1

https://www.t-nation.com/training/de-constructing-computer-guy-2

(very much recommended to everybody who spends a lot of time on the computer, one of the best articles in this regard)

Comment author: adamzerner 14 April 2015 01:48:17PM *  0 points [-]

Well, they are supposed to, but it happens rather regularly that ten minutes of googling gives me treatment ideas that none of the doctors I know have heard about and they are proper clinically tested ones.

Yeah, I've seen a handful of cases like this as well. It'd be interested to hear from some sort of insider what the truth is. I suspect that you're right and that they are biased towards what they learned and are biased against what the new research says.

Comment author: Algon 12 April 2015 07:26:28AM 0 points [-]

I've tried a few of those things; I believe that the neurologist I went to is quite good with dealing with migraines, and I have another appointment with someone of similar standard. In regards to 5, I was thinking of taking a course on neurology on edX. It may well help. Thanks for the advice, I hadn't heard about 4, and I was a little cautious about 3.

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