I am making this thread in response to this linked thread which brought me some ease of mind that I was not alone in the world with this problem:
Unfortunately I did not find any solutions in that thread and it has since been closed. After much experimentation, these are things I have found to bring me relief. I suffered many sleepless and restless nights due to these symptoms so I hope this helps. This isn't a cure but it can provide relief.
Ice Pack: Hear me out. My theory is that we have inflammation at the base of our skull, neck, upper back and/or some combination of the three. This brings me the quickest and most effective relief. I do this before resorting to any of the other things I will suggest later. I place an icepack horizontally along the back of my neck but high enough that it is kind of near the middle of the back of my head. I leave it there for about 10-15 minutes. I then switch the ice pack vertically along my spine at the top of my back. I have found myself waking up as I unexpectedly fell asleep from the relief. Do this 2-3 times a day.
Easy Neck Exercises: Stand up straight, clench your teeth and bring your chin in towards your neck, hold for a second or two and then back to your starting position. This gives the back of your neck a nice stretch. Do this 10 times and do the 10 reps two more times throughout the day.
Second exercise, same deal but opposite direction. Stand up straight, clench your teeth, and pull your head back giving the front of your neck a nice stretch. Do this 10 times and do the 10 reps two more times throughout the day.
Zyrtec-D (Or any anti-histamine with Pseudo-ephedrine): This is something I discovered by accident when my nose was really congested. I was feeling the pressure at the top of my head at the time but 30 minutes or so after taking the Zyrtec, I realized all my symptoms were mostly gone.
Steroids (Ingested):My ENT doctor put me on a round of steroids for my allergies and they helped with the inflammation. As my theory is that we who have these symptoms have inflammation around our neck/upper back area, I feel that the steroids helped with that as well. I don't recommend this highly because it lowers your immune system response.
Last Resort:Codeine and muscle relaxers. I went to the ER at one point early on because my symptoms were so bad. As usual they found nothing but they did prescribe some codeine and muscle relaxers. While I don't think they actually help get rid of the cause, they did give me relief. They are addictive though and probably just get you high enough where you don't care about anything else. Addictive, so take judiciously.
That's about it. If anyone else has some advice, I would love to hear it. I hope this helps.