Thanks for the welcome from everyone, as well as the responses! I wasn't expecting quite so many, but I am pleased
General notes:
As to why the D.O. put me on anti-virals for only a week... he said in his experience, some patients could be on them for up to a month and have the same crash afterward, so if it didn't 'work' after a week, it wasn't really worth pursuing in his estimation. At the time, I was happy with that answer, and didn't push the issue much. However, now that I have continued to stay at the same or worse level of energy, my parents are finally taking a 'whatever it takes' approach to getting my health back on track, even if it is costly.
Nielk - thank you for the recommendations. I've found heating my neck does sometimes help. Since its summer at the moment, that has been more uncomfortable than anything but as it gets cooler I will try it more. My mamma bought me this pillow that's supposed to be good for neck/back, but I personally find it supportive but uncomfortable, so I only use it about 50% of the time. Maybe being more consistent would help.
I think I remember reading you or someone else say that before, about it being impossible to feel pain in the brain. Pain in the brain what it *feels* like, not saying actually something *is* clenching my brain. Just to clear that up. Inflammation is my hypothesis, too.
Shell - I have thought of dark glasses. I wear prescription glasses, so wearing sunglasses over top is a pain, but I might try it some time anyway.
nanonug - thanks again for mentioning inflammation. More support for my hypothesis. I will check out the thread you mentioned later. Curious to know what a 'mast' cell is/means as well as more information! Oh, and the mono is gone, I am pretty sure; I've had blood tests for mono done several times over the course of the past two years. The antibodies from the IgG blood test are 'slightly elevated' according to the drs, but still normal.
Sushi - The doctor I am planning to see soon (Dr. Edward Conley in Flint, MI) pursues a more aggressive approach with the antiviral Kutapressin, and since I responded so well to an antiviral treatment before, I am hoping this will also help me. I've looked it up on here before and a number of doctors seem to use it. I am hopeful!
@Marlene - How funny you should link to Dr. Lerner's PDF! I've read it a few times. I actually almost made an appointment to see him, but I'm going to a different doctor that is a few miles north of him. Some of your other suggestions (gluten-free, milk-free diets) are things I am doing right now as well. Since the headaches and even more so the brain pain come at all times of day (regardless of what, or if, I've been eating) I don't think they are being caused by something I'm eating, but it's a good thought. By the way, I love your name
Dainty - Hi, friend!
That sounds immensely painful.... In some ways, it does seem similar to the brain pain I've been having. If/when I find a cranial osteopath in this area, I will most certainly see what he/she says about how structural issues with the bones in my neck/head could be contributing to this brain pain. I haven't been to my chiropractor in a few weeks, but I might even ask him next time I see him. (And I will respond to your e-mail later. Possibly after a nap.)
@Tania - Wow, thanks so much for your reply. It was very helpful. I'm sorry to hear you had the same thing happen during college. It's so frustrating. I've always been a very disciplined person. I even graduated from high school when I was 16 in high hopes of getting college done sooner, but of course that has all changed. I think at this point I will be forced into taking your advice of cutting back on classes because I've simply run out of money and have no way of earning any in order to take the class I need and afford the spring semester (let alone travel across the country and live the life of a college student!).
And... I think I'm the hare... taking a nap on the side of the race track. =P
peggy-sue - Whoa, that's amazing! Unfortunately, I've been taking sublingual B-12 since April, and the brain pain didn't even start until a month or two after that. But the brain suffocating, vacuum-sealed, stuck in a pressure cooker is a great analogy that I will have to save and use as an explanation later.
sally - I expect my cortisol levels will be getting tested soon, so hopefully that will reveal some of the adrenal/stress problems. I know they are there, just no idea how bad.
Thank you, everyone who has posted. All of your replies have been helpful. This forum truly is amazing