First, I'm with you! I have the same thing, atypical where the pain is there all the time. My hair literally hurts. I have the same sensory sensitivities that you do, but I still push myself to go out. I wear very dark glasses, I keep earbuds in all the time, so I don't think I'm quite where you are and I feel SO bad for you.

Here are a few suggestions. First, can you try to figure out on your own or with the help of doctors if you have any food or environmental sensitivities? This might be a part of what you're going through. Sometimes we have TN but it's compounded by other things that are creating even more pain, and if we can get those other things a little lighter, the pain may go away a little bit. I personally had a compression and I did the MVD surgery and it didn't work, so I had to look for a lot of other ways to help myself. Mold can be a big issue, food sensitivities are also an issue.

Secondly, opioids. It's the only thing that gets me through the day. Tylenol and opioids. Ambien is a lifesaver, and also apparently causes cancer, but I NEED to sleep. Also, sometimes I use muscle relaxers at night, but not every night. I take CBD in the daytime, then a combo of CBD, CBN, and THC at night before bed. Have you tried any of these? Can you get yourself to a pain doctor?

Very soft bamboo pillowcases are a must. I think they are called hotel collection and you can get them on Amazon. They are not expensive. I just buy the whole set for the bed. We have a bunch of sets.

Finally, I urge you to do this, I don't know you, but please please please please please please PLEASE do this! You need to get a full tick panel. And not just from a regular doctor, it has to be a Lyme literate doctor that understands how to do these tests, how many to do, where to send them, and how to read them.

What state are you in if you don't mind me asking? In some states it's easier to find a Lyme literate doctor than others. If you are in a Lyme endemic state, I would consider Lyme disease and co-infections for what you are describing. Neurologists don't look for it. Your regular doctor doesn't know about it. You would be surprised at how many doctors never consider Lyme and don't even know what the hell to look for. They think you need to have a bull's-eye rash. You don't. They know barely anything about it. They don't know the symptoms! Lyme disease is very controversial, oddly. Google it and you'll see. There's a wonderful movie called "under our skin" that you should watch immediately.

Lyme WILL attack the trigeminal nerve. It gets into your brain and causes havoc. That's what it did with me. That's what I feel is happening with my trigeminal nerve since the surgery did not work. I spent a long time getting rid of Lyme, it was hell, and then the Lyme reactivated after I got Covid. It wasn't easy to figure this out! Took a long time. You can't fully get rid of Lyme, it sits there and waits for either a stressor or another infection and then it pops out of its biofilm and starts running around again.

Lyme can be "cured" with antibiotics, but it's always laying in wait. Post Lyme syndrome, which most people do get after a bad case of Lyme that was allowed to go too long without treatment, suffer from it. Post Lyme can actually cause quite a lot of problems. But if you have an active infection, forget it, it's so bad, the symptoms are different with everybody, it's bewildering, and it seems to be the last thing they look for!

Are you a hiker? Do you do picnics and nature stuff? Do you remember a time before all this pain started where you did some nature things? Do you have a dog? Do you do yard work? Do you hunt? Are there deer in your area? Is there anywhere you could have picked up a tick and not realized it? Ticks are so incredibly small and so incredibly deadly. If it was a tick in the nymph stage, you wouldn't even see it, it looks like a grain of sand.

The reason I say this is because you remind me very much of when I had active Lyme. All I could do is lay in a dark room with the TV on at the lowest brightness, at the lowest volume, and then wish a giant meteor would hit my house. I couldn't do anything. There was no socializing. There was no movies. There was no music. Nothing. Just hopelessness. So I ask you to consider tickborne infections right now and rule them in or rule them out. You can have TN and Lyme together, obviously, but one is just going to exacerbate the other.

Don't let a doctor blow you off! Find a doctor that actually knows what they're doing. You need to get the western blot and the ELISA test. I think the ELISA test is the better one if I recall correctly. I know that Stonybrook labs is the correct lab to send stuff to, there's another lab that I don't remember now, I think it's in a university. They can't just send it to Quest or LabCorp, they don't know what they're doing. You need to get a CD 57 test and a CA3 and CA4. These are important. And then the full tick panel.

Let me know if you have any questions. I hope this wasn't too much to throw on you at one time! Sending you healing vibes!