Recently diagnosed with Trigeminal Neuralgia

Hello, I am looking for help. I was recently diagnosed by an ER doc. I woke up about two weeks ago now with my face hurting, a burning sensation on the right side, my ear hurting and spit out a blood clot while brushing my teeth. I went to the ER and he gave me steroids to take for 5 days and antibiotics for an underlying virus he said to take for 10 days plus ibuprofen 800 for pain. I followed up with my pcp last Friday and he did nothing at all. I’m trying to figure out what kind of doctor treats this condition. I’ve been told it’s not an ent or neurologist but that i need a pain management doctor. But I can’t see them until July. I’m just really confused and frustrated. Is there anything I can do in the meantime? Please help

You need to see a pain specialist and a neurologist. My dad had MVD surgery to correct his TN and it worked , hes now pain free . It took time though . Stay on the doctors , do your own research and dont wait to call them like they all say to do , they never call . Trust me .

The squeaky wheele gets the grease .
There is hope just keep on them , good luck .

So sorry about your problems! I have had TN for about 9 years. It was first diagnosed by a very sharp, very wonderful ENT. He sent me for a brain scan (CAT, I guess) to rule out anything like a brain tumor. Nothing like that showed up. He prescribed tegretol, which I have taken in varying amounts according to my pain level. I had a really bad spell in late summer last year. He gave me a prescription for some additional pain meds, but said that if it got worse, he would send me to a pain specialist.
I went to a chiropractor, who said that the upper part of my spine was compressed. She began treatment on that and I had a drastic reduction in my pain levels, and now they are completely manageable
Find a doctor who is sharp, has a good bedside manner, and do what he says. I think that there are various ways to find one, maybe through the Facial Pain Association.
Maybe a neurologist is best, I can’t say. That is my story.
Praying for you!

You definitely want to get to a nuerologist for this situation, assuming it really is TN or ATN. A nuerologist will work with you with such meds as anti-seizure, tricyclen anti-depressants, and nerve pain meds to help get things under control.

You also need to have a MRI to rule out tumors and other nasty things like that, did the ER even do that before telling you what you have? Were you tested for herpes? What about shingles? Do you have a rash? The list goes on at this point. Considering TN is considered a rare condition I wouldn’t take an ER Dx to heart just yet. There are many things out there that hurt like TN for limited amounts of time. Bone infection is another thing. Since you spit out a blood clot have you been checked for any sort of luking denal abcess?

Most people who end up with TN go through a huge battery of tests, long conversations with nueros, and a round of specialist (dental, neuro, sometimes ENT). I find it hard to believe a single ER visit has gotten you the correct Dx and correct treatment for TN/ATN. As I mentioned, there are too many variables at this point. And it’s only a working theory that TN is caused by any sort of virus, so don’t take that to heart either. There are many, many people out there who have TN/ATN for other reasons and for no apparent reason.

Hopefully you’re one of the lucky ones and you did have a virus and once that clears up the pain will stop. If it doesn’t due diligence is required, starting with MRI to check for nerve compression, nerve disfigurament, and tumors. Then move on from there. You have to rule out the “regular” stuff before you get into the rare diease category.

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Thank you so much. I was able to find a new pcp today along with a neurologist. Unfortunately I can’t see them until June and July. You mentioned was I tested for herpes, I have herpes but have never had an outbreak. Could this be something from that? I also have lupus and will be going to see my rhummy on Thursday.

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Disclaimer being I am not a doctor…

Yes, it could be herpes. Herpes can settle on nerve endings and create Shingles-like nerve pain, although both usually include a rash. Lupus is going to be a wild card for you as often a “simple” flare up of something is so not simple when compounded by Lupus. My advice to you is to proceed with extreme caution. There are hundreds, if not thousands, of TN people who have had extensive dental work done needlessly because it seemed like a dental issue. Or sinus surgery, even. Just proceed slowly, start with the obvious and work your way down the list to the rare. I would definitely discuss this with your rhummy on Thursday. I don’t know much about Lupus other than the fact that it can be crazy and create crazy reactions in your body.

I have concerns over the blood clot you mentioned. TN/ATN does not have bleeding or blood clots as part of it at any time (unless one has bitten the heck out of a tongue or cheek because the face was numb, but that’s a secondary issues, not a primary one, and painfully obvious what happened). The fact that you had that makes me think something else is going on. Make sure you mention that at your appointment.

Right not I tend to want to tell you to make an appointment with a neuro but get yourself to a dentist first. Spitting blood from the mouth is usually dental based.

Good luck, keep us posted!

yes, I agree, the blood clot thing is very suspicious. I would investigate the dental aspect of this very thoroughly, with a competent dentist. See if you can get a high resolution CBCT scan of the area also if nothing is obvious on a normal X-ray.