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:
Other options:
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...
So, I read a post a little while ago saying that asking the community for advice on personal problems was okay, and no one seemed to disagree strongly with this. Therefore, I'll just ask for some advice, and hope that I'm not accidentally going past some line. If I do, I apologise
I have had migraines for quite a while now. They started when I was a child, but were infrequent in those days. They got progressively worse as time went on, and things started to get quite bad when I was about 12. A few years down the line, I would have headaches for months at a time, with migraines popping up for a few days a month. It got worse from there. Now, I have had migraine-like symptoms for 10 months now. I say migraine-like because part of the definition of a migraine is that it lasts from about 3 hours to a few days. According to a neurologist I recently went to, I have transformative migraines, or wording similar to that. So I have all the symptoms of migraines, except they last for inordinate amounts of time. I've had an MRI, and it showed nothing wrong with my brain. According to the World Health Organisation, this is more disabling than blindness, and as bad as acute psychosis: http://www.migrainetrust.org/chronic-migraine You can see why its rather important to me that I get rid of/deal with this.
Now, I've tried quite a lot of things over the years, especially in the last two or so. NSAIDs do very little, and thing like migraleve (paracetamol with codeine) are a little better. Sumatriptan provides some relief, but it doesn't get rid of the migraine. At best it will knock me down to a weak migraine. I've tried taking propanalol (160mg) for half a year, and it does little to help. I was prescribd Amitiptyline (10mg) a week ago, but it hasn't had much effect. I was told to increase by 10mg it every two weeks until I hit 30mg. I've also tried cutting things out like chocolates, and dairy for a month. It didn't have any effect. I also don't have any caffeine. So this eliminates some common causes of migraines. My migraines sometimes respond to heat/cold applied to my head, but this is only some of the time, due to my migraines shifting in nature. Further, it only takes the edge of them. I've also tried taking magnesium supplements, but they had a negative effect on me i.e. strange dreams and insomnia. That just made my problems worse. Also, I've ruled out medication overuse.
So, does anyone have any recommendations? There should be a few people who have had experience with this level of migraines, and I expect they might be able to provide some advice. I'm not too optimistic, but I really need something that works.