Sorry to hear all you're going through - it's awful, I've been there and would still be having a lot of pain if not for reading everything I could (including many studies) and then learning more and more about human biology every day and thinking for myself. Too many people leave their whole illness in the hands of a few medical professionals or scientists who can only see one part of the disease which are the patients who come to them or the patients in studies they enroll or the mice, fruit flies, etc. they're researching.
So. I don't have all the answers. I've also had orgonophosphate poisoning as a fetus and developed EDS/CFS/ME symptoms throughout my life. The pain for me came decades after I was born. You and Remy and your doctors were probably on the right track - your vagal nerve is probably signalling mast cells to release cytokines and most likely in your case as in many of us, it's he neurotransmitter histamine that is out of balance. But not in and of itself. In our case, organophosphate poisoning throws off acetylcholine balance.
Here's a webpage by Cornell University which studied this : http://pmep.cce.cornell.edu/profiles/extoxnet/TIB/cholinesterase.html
ACETYLCHOLINE is made more powerful in some instances and in other instances made less powerful by histamines.
Here's a biological writeup on how the vagal nerve releases histamine and acetylcholine : https://books.google.ca/books?id=i-...y vagus nerve acetylcholine histamine&f=false
Why are you getting these symptoms at night? At night the vagal nerve gets to work repairing the body. The main neurotransmitter it uses to get a number of jobs done including slowing heart rate so we can enter the phases of REM sleep, etc. is acetylcholine. You can find reputable biology sites on line which talk about the vagus nerve. Don't bother with the yoga and psychiatric sites right now. Just the biological ones. Psychiatrists have developed a reprehensible explanation of the vagus nerve blaming the patient and turned it into a great business for pharmaceuticals to sell pills to way too many people on this planet. And yoga sites can be well, a little fruity when it comes to biology.
Before you go for tests, (but you may want to have a conversation with your doctor to ensure your next plan of action is safe) you could try out ways to increase your acetylcholine through your diet and minimize histamine release. Thank goodness for reputable sites on the web that give great information but really, this should be the first line of treatment for anyone showing up at doctor's offices with EDS/FM/CFS/ME symptoms. For decades medicine has been about separating symptoms and treating them one at a time with a pharmalogical product, rather than looking at the body as a whole and asking, how can we restore balance? There's a medical word for body balance which was buried and is finally starting to be used by doctors again, homeostasis. It's like our body is a spinning top and anything that hits it can throw the top off it's balance. For us, if our acetylcholine is either low from birth or not getting the signal out to the nerves, our bodies can be thrown out of homeostasis more easily. As a starting point, right now, it's fairly easy to do the following and see if it makes a difference. Yes, researchers may come up with a pill that will stop symptoms to some degree. I'd rather have a healthy body that stopped producing symptoms to the extent possible.
Diet - processed foods, including pasta, bread, rice: cut out for awhile completely if you can. cut out coffee, only have organic teas. Eat meats that have grazed on non pesticide sprayed grass and haven't been pumped with antibiotics. Eat a big variety of organic veggies cause they will have minimal pesticides and they are the energy sources that helps provide the ingredients for neurotransmitters and the energy that powers them.
Baking soda and vinager and castille soap clean everything. Recipes online at David Suzuki's site. Or I find Ecover products great. (With baking soda and vinager added to the washing machine for laundry.) Air freshener, perfumes, colognes, etc. - sends poisons to the bloodstream via the lungs which have no filters. Our digestive system at least has the filters of kidneys, liver. Breathing Pinesol sent me to bed with horrible pains and I didn't know what was happening at first.
This is controversial. Not the science, the politics. I have a naturopath who worked with and MD for seven years to develop tinctures that can replace meds. I see her, an MD and various specialists. I recently had a period that wouldn't stop and I got migraines and cyclic vomiting from tranxemic acid. My naturopath made a tincture, sent the ingredients via email to me which I forwarded to my doctor and guess what, my period stopped from the tincture within 2 days. No side effects. I'm fortunate though. Many naturopaths are not this good and sometimes we need rescue medicines from Big Pharma which hasn't developed much in the way of non-synthetic compounds. If you do need Big Pharma medicine (and I may still as well) then you may want to talk to your doctor now rather than later about checking to see if acetylcholine signalling is an issue for you. Why? Anticholergenics block acetylcholine receptors. All the "anti" meds. Antihistamine, antibiotics, antivirals. Also anesthesia. I just found this out recently. I've lost hearing because antibiotics are ototoxic for me. A friend of mine almost stopped breathing completely during surgery for a scary too long period of time due to anesthesia, it's believed.
Interestingly, Alzheimers medications target acetylcholine receptors, trying to boost acetylcholine. As they've been well funded, there's a full list of anticholinergenic meds to avoid and their alternatives which are distributed to doctors for them. But an anticholinergenic is the same no matter what the condition it's applied to. List here:
Google "The Perrin Technique". Should be a good masseuse or osteopath near you that will be able to do this. Works toxins out of the system.
Releases histamines. 'Nuff said. Namaste. http://greatist.com/fitness/military-uses-yoga-cure-ptsd-121712
It seems contraindicated to increase acetylcholine when the first organophosphate injury jammed it up in the receptors. I don't understand the exact science and it's still being studied. I do know the body is about balance and it's complicated. Seems to work well for me.
Google acetylcholine diet. Livestrong has some good info. I buy eggs from an organic farmer I trust and eat them only softcooked or raw. I always wash the eggs before cracking with warm water and mild dish soap cause that's where pathogens are, the shell and that could make us really sick!
Apparently it's not enough to have acetylcholine in the body, we need to get it moving through the system. Short bursts of exercise in a pool is what works really well for me. Like, one minute on, one minute off times 8 reps or whatever you can handle. Preceded and ended with gentle stretches. Dr. Peter Rowe at John Hopkins has found that stretching the limbs to far too long exacerbates symptoms. When you feel the stretch, stop and hold it for 30 seconds or so. Don't lift arms overhead too much.
Beyond the above:
Don't lift anything too heavy for now. Get up after 20 minutes of sitting & walk around. Try to avoid driving long distances. Dr. Rowe found sitting with leg extended for too long will exacerbate symptoms.
Hope this may help you get started on a path to wellness! All the best.