I need help with symptoms please 🙏

Hi thank you for having me in your group. I am waiting a long time to see a neurologist but in the meantime I’m kinda of stuck.

Does anyone know what this could possibly be? I woke up one morning around 10 days ago with a pain along my zygomatic bone also known as the cheek bone. It’s permanently there and it feels like somebody punched me in the cheek. My first thought was a sinus infection. I took antibiotics but they didn’t help. It’s a very bad pain, it doesn’t feel muscular or nerve like. It feels like a raw ache and is so tender to the touch. Iv had a ct scan and it was fine.

Throughout the day it worsens to the entire eye socket, I feel sick and dizzy and lightheaded all day. It’s only on the left side. When I blink my whole eye hurts so bad and my left ear clicks. But the worse pain stems from this one place on my cheek.

Any ideas are greatly appreciated :pray:

I presume that you’ve seen a dr if you’ve had a ct scan. Have they not considered other tests/treatments? A consult with a neurologist might confirm or eliminate a diagnosis of trigeminal neuralgia. If your dr hasn’t seen fit to pursue a diagnosis and treatment for you it would be my advice that you ask for a referral to a neurologist or another specialist for help.
Good luck to you :blush:

I would also go to an endodontist( root canal specialist)for a cone beam X-ray of that side. This Special 3 D X-ray will diagnose whether or not there is a cracked tooth on that side.
A regular periapical X-ray is not good enough diagnostic quality to detect cracks and initial infections.
Good luck

Thank you both. The problem Iv got is im the Uk which is the nhs. Unfortunately I can’t ask for anything which sucks! For example I was in hospital with left sided head and cheek pain and they did a ct scan, I requested a ct of the face but Iv just found out it was only done of the head which is completely useless as it came back clear. So based on that I was sent back to my gp.

Hi Snailz!
I have that same pain, where it feels like it’s broke & someone is punching me in the cheek.

In the beginning of my journey through a typical trigeminal neuralgia it could be pretty bad.

Most of the time warmth , or a warm washcloth would help me …it has evolved over the years,… and now if I pretty much avoid touching it or leaning on it …it doesn’t really bother me!

You are not alone , you can PM me anytime you need to talk. Hang in there, Min

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Interesting that you say this, as I do have the same symptoms as Snails and I also did have to have a cracked tooth on that same side, yanked!! I have a bridge. so very interesting indeed. Thanks for posting!:grinning_face_with_smiling_eyes:

Thank you :frowning: I’m seeing ENT on Tuesday I’m going to push for a referral to a specialist dentist as my tooth really hurts! I’m still no better. I really don’t think it’s nerve pain as it’s not responding to any nerve meds. I do get a little relief with baclofen on my cheek but around the tooth area. Sorry you also have this problem! It’s an absolute nightmare!

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Again a disclosure, I’m not a Dr I can only speak to you about my personal experience. It’s sounds like occipital neuralgia or as one neurologist told me “ neuropathic pain

I’m in the UK too and I know your issue with GPs; unfortunately they are not skilled in these areas.

I have spent my whole adult life (I’m 42 and been suffering since childhood) trying to get a referral to a neurologist and constantly sent for MRIs and told no referral.

In the last three years I’ve had to move five GP practices, been to A&E three times (laughed at by a nurse once) and finally said I’m not leaving a GP’s office until I’m referred.

I’ve now seen five neurologists and luckily I’m now under the care of Professor Goadsby whom is at the forefront of my conditions (I have SUNCT, Hemicrania Continua, Chronic Migraines and TN).

My advice, don’t back down! Also, check for the best specialists and with the pandemic, all appointments are now by phone or video conferencing, so it doesn’t matter where they are based.

Good luck in trying to find a solution :crossed_fingers:

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A trick my dentist showed me was to get a metal spoon and with the small end, tap your teeth from the bottom and the side (you’ll already now it hurts from the bottom) but if it also hurts from the side, it is likely a dental issue.

If it doesn’t hurt when tapping from the side it is more likely TN or other Chronic Facial Pain or Complex Headache.

It works for me.

Hi, if an mri doesn’t show a compression how do you know if it is ATN, which is what I have been diagnosed with? Can it be something else causing constant burning in my tooth? I have been to the dentist many times and he could find nothing dental that would be causing the pain. I have this for nine years and have been thinking of having gammaknife but wondering how to be sure it as ATN if there is no medical proof. Thank you for any suggestions or advice.

Hey Gizmo,
I haven’t seen Sharon for a while, so I thought I’d try and answer your question. ATN is Atypical Trigeminal Neuralgia. The trigeminal nerve is also known as the fifth cranial nerve. It’s considered to be the most complex cranial nerve as it not only senses pain but also controls movement and branches out to both the upper and lower jaw. Pressure or damage or irritation anywhere along the the nerve can cause pain anywhere along that nerve. This can make the whole diagnosis very difficult ie an issue with the jaw can send pain sensation to your teeth. Your teeth could be fine, but the pain seems dental.

Medically speaking there are 2 types of ATN, Type 1 and Type 2.
Type 1 (TN1) is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and/or other areas on one side of the face. TN type 2 (TN2) is characterized by less intense pain, but a constant dull aching or burning pain. Some people can have the characteristics of both 1 and 2 at the same time, again making a diagnosis difficult. The name itself really gives it away ‘ATYPICAL’ or not typical at all, there is no set symptoms. Often ATN is one of those conditions that is diagnosed by elimination. ie If it’s not ‘X’ and it’s not ‘Y’, then it must be ATN.

ATN has been one of my diagnosis’. I’ve required a few neurosurgeries and in the process I have acquired some chronic bad pain. In trying to obtain answers as to why my pain has been ongoing, ATN was given as a diagnosis. Due to my neurosurgeries, 6 so far, the idea that the trigeminal nerve has NOT been damaged at some point (If not multiple times) is impossible in my opinion and although none of my surgeries have included my lower jaw, the jaw pain is WOW intense.

Initially, I was told, ‘the pain, It’s dental’, so I had all of my top teeth removed, the pain continued. Safe to say it wasn’t my top teeth. I think I’ve come to a point where basically I have to live with it. I was told with each operation that it would be fixed, but that has not been the outcome. So please carefully consider ALL of the pro’s vs con’s before going down the surgical route. Could surgery fix it? Well, yes it could BUT could surgery make things worse? Well, yes it could.

Merl from the Modsupport Team

Thank you for your response Merl. So you’re saying I have ATN through a process of elimination? How do I know it it not TMJ which an oral facial pain doc said I had but after trying for months to fit me with a mouth guard that wouldn’t hurt me he told me to have gammaknife. I am thinking about it but am having trouble finding a doctor. Am also concerned that it could posssibly be something else. Besides the horrendous burning in my tooth all day long and sometimes throughout the night Iget afeeling that something is stuck between my teeth and it burns badly that goes to different teeth every time. I. Can feel something with my tongue but the dentist says there is nothing there. Is this a sign of ATN? Never heard of anyone complain about it. Am suffering terribly and don’t know where to turn. Thinking of going to Atlas or NUCCA chiropractor. I know I am going on and on but am hoping to find an answer. Any advice you can give me would be greatly appreciated.
Thanks, Gizmo