u/chasingamy1994

Hi everyone,

I'm currently waiting for a diagnosis and had an MRI last week. My GP has said my symptoms are not typical of classical trigeminal neuralgia, but they're investigating because of the nerve pain I'm experiencing.

I'm wondering if anyone here has experienced anything similar.

My symptoms are all strictly left-sided and have gradually developed over several years.

History:

- Longstanding TMJ disorder (around 7 years of headaches.)

- Intermittent jaw locking for several years before progressing to permanent locking around 4 years ago

- MRI has previously shown disc displacement and mild osteoarthritic changes

- Severe nocturnal bruxism (teeth grinding/clenching)

- I wear a Michigan splint every night and take low dose amitriptyline

- I receive masseter and temporalis Botox 3 times a year (100 units with majority in my left side).

- Left side feels much more affected than the right in terms of joint pain, muscle tension and facial symptoms

- The left side of my face is visibly bulkier than the right due to chronic muscle overactivity

Current symptoms:

- Burning sensation in the mid-cheek

- Tingling and pins and needles

- Pulsing sensations

- Symptoms affecting:

- Mid and low cheek

- upper lip

- corner of mouth

- upper gums

- upper teeth

- roof of mouth/palate

- Symptoms are always confined to the left side

- No facial weakness

- stiff aching jaw joint which I know is obv TMD. Also tinnitus is left ear

- feeling if muscle spasms in left cheek

- Cranial nerve exam was normal according to my GP

Pattern of pain:

- Symptoms tend to start mid morning

- They fluctuate throughout the day

- Evenings and nights are usually the worst

- Some days the symptoms are like a background discomfort that is still very distracting, and some days it is agony.

Things that seem to HELP (which I know isn't typical for TN):

- Eating

- Chewing gum

- Talking

- Massaging or touching my face

- Exercise like walking and running

- Hot water from the shower

- Cool breeze on a walk

Things that seem to make it worse:

- Sitting still

- Resting

- periods of rest where my face isn't moving much

- Later in the day/evenings and nights

I know this doesn't sound like classical TN because I don't get electric shock attacks or typical triggers such as chewing, talking or touching my face. In fact, those things usually improve my symptoms. Mine is constant though and I don't get a relapse where my symptoms disappear.

Has anyone here experienced something similar, particularly if they also have chronic TMJ dysfunction or severe bruxism? Did you eventually receive a diagnosis such as trigeminal neuropathy, atypical TN, persistent idiopathic facial pain, or something else?

Thank you for reading.

Anyone in the UK paid privately for TMJ treatment after years on the NHS? Was it worth it?

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I'm looking for some honest experiences from people who have gone down the private route for TMJ/TMD treatment in the UK after spending years under NHS care.

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I've had worsening TMJ pain for over 4 years. My MRI shows disc displacement without reduction, mild osteoarthritis, and condylar beaking, and I've been under NHS specialists for much of that time. I've tried various treatments, (botox, splint, amitriptyline), and waited over a year for arthrocentesis. Some things have helped a bit, nothing has made a major difference.

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I've recently been quoted by a specialist in Manchester:

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* £197 initial consultation (including imaging/X-rays, I think)

* Around £1,495 for the diagnostic work-up and treatment planning, including:

- T-Scan analysis

- Modjaw analysis

- Sleep study

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I have some savings, but not a huge amount. I'm also currently unemployed and job hunting in what feels like a terrible job market, so spending this kind of money would be a significant decision. But at the same time its 4 years of my life in pain and I'm 28.

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I feel my bite is playing a role in my symptoms, but the last NHS TMD specialist I saw felt there wasn't an obvious issue and described me as being very sensitive to my bite abs a 'sensitive soul'.

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For those who have paid privately:

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- Did you feel the assessment was more thorough?

- Did you receive a diagnosis or treatment that the NHS hadn't offered?

- Did your symptoms improve?

- Looking back, was the money well spent?

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I'd really appreciate any honest experiences, positive or negative.

Chronic TMJ pain, mainly nerve pain - no one seems willing to help me. Would appreciate any advice as I'm at a loss.

Hi everyone, hope you’re all as comfortable as possible and having a nice weekend.

I’m a 28-year-old woman and I’ve been dealing with severe TMJ pain for 4 years and 3 months. Before this I had a history of headaches/migraines, but nothing remotely like what I experience now.

Quick rundown of my situation/history:

• Severe bruxism, mainly nighttime jaw clenching

• Around 10 years ago I cracked a back molar and lost around 80% of the tooth structure. It was left for years as a very flat/low filling. About 3 months ago my dentist rebuilt it with composite bonding so it resembles a tooth again, but it’s still lower than the opposite side and doesn’t seem to contact properly.

Because of this, I strongly suspect that when I clench at night, most of the force is going through the LEFT side of my jaw (the side without the damaged molar/filling issue). All of my symptoms are also on the left side, while the right side feels mostly normal.

• MRI 3 years ago (before treatment) showed:

Disc displacement without reduction

Mild osteoarthritis

Condylar beaking/remodeling from wear

• I also have an overbite, though I’m not sure whether it has worsened since wearing a Michigan splint.

• When this first started 4 years ago, the pain felt purely muscular/joint related. I had clicking and it felt like something had shifted in the joint. Over time, nerve pain developed alongside it but its getting worse. The clicking eventually changed into more of a closed lock/noise-free restriction, sometimes with a crunching sound if I open too wide.

• I had 4 premolars removed as a child for braces.

• I also had all 4 wisdom teeth removed around 3 years ago.

Treatment so far:

• Botox for 3.5 years (100 units into masseters and temples, mostly concentrated on the left/bad side)

• Amitriptyline for over 2 years (currently tapered down to 12.5mg due to side effects at higher doses)

• Hard custom Michigan splint from a TMJ specialist for almost 2 years, with fairly regular adjustments

Also I am waiting for arthrocentesis and have been for almost a year on the NHS.

Despite all this, I’m still in severe daily pain.

At this point the nerve pain is the most distressing symptom, but I also have very severe muscle pain and deep joint pain.

Symptoms are ONLY on the left side of my face:

* Burning/electric nerve pain through my cheek and around my mouth

* Pins and needles

* Burning pain in the roof of my mouth

* Burning/aching teeth

* Burning sensation on the side of my tongue

* Electric “live wire” sensations

* Throbbing nerve pain

* deep aching pain in the jaw joint

* tight, punching/spasm-like muscle pain

* Severe stiffness/tightness in the joint

* Limited range of motion

* Tight neck muscles on the left side

* tinnitus only in the left ear that changes day to day

* severe headaches around once a week

* The left side of my face constantly feels swollen/inflamed and is visibly more asymmetrical/firmer than the right side.

One thing that confuses me is that the pain - especially the nerve pain - often IMPROVES when I:

* Eat

* Chew gum (I know I shouldn’t)

* Walk/run

* spend time outdoors/in nature

* the pain is much worse at rest, especially at night when it’s hardest to distract myself from it.

Because of this, I’m unsure whether this fully fits something like Trigeminal Neuralgia Type 2, since movement and chewing seem to calm it down rather than trigger it.

At the moment my dentists/maxillofacial team mostly just give me Botox and tell me to work on anxiety. I’m currently waiting for arthrocentesis, but so far I’ve had to fight tooth and nail just to get scans or even discuss my symptoms in detail. It honestly feels like nobody really wants to engage with how severe this has become.

Has anyone else had TMJ present primarily with nerve pain/burning/electric sensations like this, alongside significant muscle and joint pain?

Would really appreciate hearing from anyone with similar experiences or any advice on what to do.