@Wayne mentioned Perrin Technique osteopathy. My daughter (16) has been having Perrin treatment for about a year now and I feel like its been one of the most helpful things she's done. Was rough to start with but after about the first 3 or 4 sessions she started seeing really good improvement. It's slow, though. Positives are that it is very inexpensive compared to some of the other options being talked about here. I'm in the UK and daughter has never even had any imaging done so far.
About a month ago, daughter was the best she's been since she got ill about 2 years ago. PEM had greatly improved. OI was getting better and better. Pain, including headache was disappearing. (I also credit PEA supplements with helping this. Relieves neuroinflammation, so also possibly intracranial pressure.) I guess her immune system must have normalised enough for her to get her first cold in 2 years and everything went back to the worst of the worst. Bed bound, extremely light sensitive, unable to walk due to extreme OI/POTS.
So, I decided to try some Diamox I'd ordered a while back to see if relieving intracranial pressure might help. I'd read some of Diana Driscoll's stuff about using Diamox to treat POTS successfully. It's counterintuitive for POTS because it's a diuretic and everything you're "supposed" to do for POTS is the opposite, but at this point I felt I had nothing to lose. She'd fainted that morning trying to get out of bed ad was pretty much bedbound.
I gave her 1/4 tablet (62.5mg) with little hope of any response. Within 10 minutes she was noticing sensations in her neck and head. Twinges. Fluid shifting, I guess. Within a half hour the girl who had earlier fainted on the floor was walking out to the garden saying she felt much better. It seemed crazy. All this was accompanied by a ridiculous amount of urination, but luckily she was no longer too dizzy to get to the toilet. She took 125mg before bed that night and again, shortly after, her neck was cracking and she was getting random short burst head pains here and there as something seemed to be shifting. Urinating loads to the point where it was getting her out of bed at night. The next day her light sensitivity and headache was gone and her POTS symptoms were completely under control. The *symptoms* were under control but her HR was still going up to 155. She was active and alert. Basically a 180 degree turn around from the day before. Later in the day when her headache started building up she asked for another dose. She never asks for her meds, so it was surprising. The frequent urination had settled down by this point.
Next day I came home early afternoon and found her with all her shades open and writing a practice essay for an exam she's hoping to take (!!) Out in the garden loads. Doing her laundry and hanging it on the line. Over the next few days she seemed to need the Diamox less, so we went down to twice a day. By about day 4 we started noticing that she was extremely fatigued. Sleeping very late and tired all day. Later in the day she started getting tingling in her fingertips (a known side effect) and also complained of stabbing chest pains. At that point we decided to stop the Diamox both to see if maybe she just needed a "blast" of it to clear fluid rather than a maintenance dose and also to wait until we could consult with a doctor. And that's where we are now.
