According to doctors, sometimes there isn’t really a cause and you just have to live with the pain. I just can’t accept that.
First, I had one type of trigeminal neuralgia on one side. Rare, especially to develop it in your 20s.
Later, I developed both types of trigeminal neuralgia, on both sides. Very rare.
A few years ago, I started getting glossopharyngeal neuralgia. Along with TN? Extremely rare.
Now, I also have occipital neuralgia. I don’t even see any accounts of this combination existing. So… I’d assume it’s PRETTY RARE.
My docs aren’t worried about it, because my MRIs repeatedly showed no change. They say it’s not MS, but then when I ask what it COULD be, they can’t think of another test to do to find out. So I just have to live with it. They’re only concerned with ruling out MS, lupus, Lyme disease, etc., not finding out what it is and fixing it. MRIs also don’t show any compressed nerves that could be fixed. I’m a woman, so I’m probably making it up and being dramatic and all that. One neurologist, when I pressed to find out what it could be, actually asked me: “Do you WANT it to be MS?” Like, are you serious? NEXT.
Does anyone else have all three like this? Anyone have any answers?
Hello. I had a Gamma in 2012. Lasted a year. Had an MVD 2014. Blood vessel wrapped around nerve was cauterized. I’m almost 10 years out and I have pain in my ear into my throat and electric deep pain in left temple. I’ve had every test for my ears and throat. No issues. I contracted COVID in May of this year. The symptoms really ramped up on both sides. I felt like I was having a stroke. Diagnosis: bilateral TN as the result of long COVID. Hmmm. I have pain in my face every day. I use medical marijuana and have had great results. I’m not taking Oxy. Not an option for me. I have basically given up. I’m handling this myself.
Dear Jocelynrenee, I am sorry to hear of your condition.I can only speak to the MRI. I had a MRI that did not show any compressed nerves but when I had MVD surgery I was told they found 3 compressed nerves. I also read that it’s not uncommon for this to be missed by a MRI. Fortunately my surgeon believed what I told him and used my symptoms and relief of pain by taking Tegretol to know I had TN. The surgery was a game changer for me, I have never looked back. Please continue your search to find a TN specialist who can help get you the relief you so desperately need. Best of luck!
I understand this so much…. Mine progressed much like yours—both kinds of TN bilaterally then ON…and here is what a doc finally admitted…MRIs don’t show grey matter! You absolutely could have lesions in the grey matter. Whatever is going on, something in your body is attacking the sheath surrounding your nerves. I’m so sorry. Gentle hugs. I understand. I’ve had this since 2011, with no more periods of remission since the end of 2012, I think. Hang in there….
PS: years before I had lesions show—-they decided to treat it like MS, because I was so young and nothing else made sense. When they did that, they were able to treat me properly. They are very loathe to admit that they’ve gotten lazy with imaging and not everything can be seen on MRIs……and prior to them only like 30 yrs ago, they dx without them.
Hi hi,
I understand your frustration. I had a series of either wrong diagnosis where treatment did nothing or, worse, was talked into a surgery I didn’t need and a second one to correct something that went wrong with the first surgery. I have had Doctors who literally said they had no idea and walked out. One jerk suggested aspirin.
If at all possible try to see a headache specialist, not just a neurologist. I have wasted hours of my life educating Neurologists on how to treat TN and even what it is. Often The headache specialist will be more willing to see the real pain picture instead of relying upon endless mri and generic tests. My first appointment with the specialist he was such a switch from the doctors I had seen before I broke into tears in his office. He got me on a path with, if not a clear label, at least finding things to get me back to something of a life. The longer diagnosis for me is Atypical facial pain trigeminal neuralgia type 2 and occipital neuralgia. But I don’t fit into any of those box either as neatly as medical professionals would like, but we have been using a series of “off label “ medications like lyrica, Vimpat and nerve blockers like Botox and Dysport. It’s not hopeless but you do need to find someone who is willing to experiment with you. I did have MVD in 2018 and it helped quite a bit. Ultimately they can call it Martian burning head explosions and I don’t care as long as what we are doing works.
Keep in mind, as much as Doctors seem to forget, they do work for us. We don’t have to settle for a doctor that doesn’t have the knowledge or simply is too lazy to figure out the problem any more than we are stuck with one mechanic. Ask around to see who others are seeing and get their opinion. Look up doctors in your insurance listings and then Google them for reviews. If you need to, ask for a referral. I am going a bit farther to see my Specialist but the fact I can drive again makes up for it.
First TN attack at 13 years old, so know what you’re dealing with, and how painful it is. I believe viral infection in the nervous system caused the myelin sheath to deteriorate, similar to what happens with MS, we just have different symptoms.
I’ve also found a cure that worked amazingly for me and has worked for others. At 44, have had decades of pain free living, zero drugs, no surgery. I’ve posted about what I’ve found, check my other posts…you can absolutely be pain free…two basic paths are relieving any nerve compression through upper cervical chiropractic, and using a olive leaf, lysine, and silver to kill the virus in the nervous system.
I know you were using sarcasm, but I found that very funny. It got me to thinking, what would I call it (TN) if I didn’t know what it is? I would call it “Fiery Electric Hammering Wire Brush Syndrome”.
This is an horrible story. I hope you will find something that will work for you. If everything physical has been ruled out, you might want to consider the mind-body approach (Tell Me About Your Pain Podcast - Curable Health). I know that this might seem as an insult when you are in so much pain. However, that was also my case five years when my TN started to return after my MVD operation (I had seven years of remission following the MVD), and I was truly desperate. I was so desperate, that I was even willing to try the mind-body approach when someone else posted about it in this site. I am now 97% better, and again have a future to look forward to. Be skeptic, its good to be skeptic, but at least hear the podcast. Its free and has no side-effects, unlike all the doctors and medicines.
You’re not alone. I have all 3 also. I’ve had every treatment available. And tried all medications. Even Marijuana. Sometimes it takes the edge off but that’s all. Even Microvascular Decompression Surgery. (MVD). It was horrible and did nothing at all. It has now spread to my right side. I am looking into Stem Cell treatment. It’s not approved in the USA. So I’m leery of going out of Country where it is legal. It’s also very expensive.
I pray for you that it gets better and is only seasonal. Mine is year round.
