No diagnosis

Hi everyone, I’ve had what my doctor and I believe to be TN for almost 4 years now. My pain is mostly in my left ear and jaw line. My neurologist, however doesn’t think I have TN because the symptoms are a little bit different. I have been on Carbamezapine and Gabapentin this entire time but I still have to take Advil every 4 hours or so. I’m not sure what to do and am tired of feeling this way all the time. Any suggestions for me?


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Hey Megara
Welcome back
This is not unheard of with TN. I’ve had a few differing diagnosis, TN being one of them.
TN can have many causes and is not really well defined
TN is one of those conditions where “If it’s not ‘X’ and it’s not ‘Y’, then it must be TN…” and having differing Dr’s tell you differing diagnosis only serves to make the whole process so much harder. I went through a process of elimination. If a dr suggested a treatment, I gave it a go. If they suggested a medication, I trialled it. I went through and eliminated every option they suggested. It was whilst going through this process that I was given the TN diagnosis.

OK then, so what was the neurologists opinion? If it’s not TN, then what is it? It may be easy to eliminate a condition by disagreeing with a given diagnosis. But they can only eliminate it if they can give your symptoms another name. In my case the easiest answer was to say ‘He’s a nut, He’s crazy in da coconut…’ They deemed I simply couldn’t be feeling the intense pain I was having. “WE can’t find anything… …it must be ‘all in his head’…”

Don’t give up. I know, I make that sound easy and I know it’s not, but that last comment “…it must be ‘all in his head’…” well, in my case that was very real, they found something growing in my head. I’d been telling the Dr’s for many years ‘something’s not right’ and been made out to be every type of crazy. And then when they found it, it was like some new discovery ie “Ohh look what we found” I’m left standing there saying 'I told you something was wrong…"

You know your body better than anybody and if something is not right, you must speak up until you get an answer that you are comfortable with. You have every right to ask for a 2nd opinion if you are not comfortable with the information provided. I didn’t stop with a 2nd opinion, I got a 3rd, a 4th, a 5th… and exhausted every avenue, every treatment option open to me. In the end I had to accept that this was about as good as it gets and that ‘acceptance’ place is not an easy place to get to.

Hope it helps
Merl from the Modsupport Team

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Hello, Your pain sounds just like mine. Mainly in the left ear and lower half of my face. I was told I had atypical TN and put on Carbamezapine and Lyrica. I took that for about 8 months, then I started feeling sick all the time and started looking into some natural alternatives. I’ve had great results using CBD/Hemp oil for the last 4 years. Much longer periods of normalcy between pain episodes than I had with the medication. And no side effects.
I hope you’re able to find some relief.

Hi Megara, is it possible for you to see a different neurologist? Warmly!

I was diagnosed with ATYPICAL TN after a dentist visit. After 5?years of sever pain and no drugs working for me a doctor suggested Eagle Syndrome. As it turned out I had a bone pressing into my TN causing my pain. A ct scan of neck with out contrast shows it. It is not a very know disease and many radiologist miss it so the script need to say to measure the Styliods and look for Eagle syndrome. With the bone remove my pain is manageable with steroids. Steroids are usually not give for TN but they could work for you if your TN is caused by inflammation.

Thanks so much for all the information. I really appreciate having people who are going through similar problems giving me advise. So far being on carbamezapine and gabapentin has helped quite a bit. I just wish I could find something that would last longer and get rid of the pain completely! I wish the best for all of you as well.

If you okay with the idea of THC (TN is one of a very few conditions it has been shown to improve according to neurological journals) you micro dose it. Edibles generally contain 10mg of THC each. I get a box of 10 of what looks kind of like individually wrapped starburst candies for about $25. It’s easiest to cut into pieces to get accurate dosage. Most people take one or more to get high….I cut one into 4 pieces and take one piece in the morning and one piece in the evening. I dont get high….a very slight lift but no high. For the first few months it was 90%+ improvement then started fading gradually. I suck it up and stop for a week or two to flush out my system then gradually bring the dose up to a 1/4 piece and that has worked well for me….no miracle cure but definite improvement. For me winter sucks and that always makes it worse.