Trigeminal Neuralgia

[Female@over50s]

From UK.
After pain became so bad I ended up seeing out of hours doctor who suspected Trigeminal neuralgia after difficult extraction 8 weeks ago, I was sent to hospital.
saw doctor there who gave me morphine and i did get relief for first time.
I'm on morphine 5mg slow release twice a day and my own doctor has prescribed carbamazepine 100mg twice a day for 10 days to see if helps.
that's it.
i wondered what i should do, still in pain but I have a constant heartbeat in my face, that never goes, it beats like my heart and is into my temple and ear.
pils took at 8 this morning wore off by 1.30 but not due anymore til 8 tonight, its just awful, beyond awful.
I wondered do I ask my doctor for a certain xray to see what nerve is damaged and how bad? do I ask to up meds before the 10 days is due? I've had constant pain for 8 weeks, worse the last 3 and dentist were terrible and basically on last appointment said they were stumped as to why I was in pain!!
I left that day and cried, two days later I ended up in hospital.
what do I do to get this sorted and diagnosed properly?
thank you anyone who replies

 

[Kiper the lab guy]

You should demand advanced imaging, MRI with FIESTA/CISS Sequences. This specialized MRI can detect nerve compression by blood vessels (common in TN) or structural issues. CT Scan: Rules out residual infection, bone fragments, or abscesses from the extraction. Ask your GP/ER doctor: “Can I get an MRI with trigeminal nerve protocols to check for vascular compression or nerve damage?”“Can we increase the carbamazepine dose now instead of waiting 10 days?”

Keep a diary tracking: Pain intensity (scale 1–10). Triggers (e.g., touching face, eating, wind). Medication timing/effectiveness. This helps doctors identify patterns and adjust treatment.

Carbamazepine: 100mg 2x/day is a low starting dose for TN. Most patients require 200–400mg 2–3x/day, but this must be titrated slowly to avoid side effects.
Morphine: Not ideal for nerve pain. Ask about alternatives:
Gabapentin/Pregabalin: Better for neuropathic pain.
Nerve Blocks: A pain specialist can inject local anesthetics or steroids near the trigeminal nerve.

You deserve answers and relief. Insist on urgent imaging (MRI/CT) and specialist referrals. Carbamazepine doses often need gradual increases, and morphine is rarely effective for nerve pain—advocate for alternatives like gabapentin or nerve blocks. If your current doctors are stumped, escalate to a hospital-based neurology or pain team.

This pain is not “all in your head”—it’s real, and there are treatments. Keep fighting until you find a doctor who takes it seriously. Let me know if you need help drafting emails/scripts for your appointments. Hope this will help you. You’re not alone.

 

[Female@over50s]

You should demand advanced imaging, MRI with FIESTA/CISS Sequences. This specialized MRI can detect nerve compression by blood vessels (common in TN) or structural issues. CT Scan: Rules out residual infection, bone fragments, or abscesses from the extraction. Ask your GP/ER doctor: “Can I get an MRI with trigeminal nerve protocols to check for vascular compression or nerve damage?”“Can we increase the carbamazepine dose now instead of waiting 10 days?”

Keep a diary tracking: Pain intensity (scale 1–10). Triggers (e.g., touching face, eating, wind). Medication timing/effectiveness. This helps doctors identify patterns and adjust treatment.

Carbamazepine: 100mg 2x/day is a low starting dose for TN. Most patients require 200–400mg 2–3x/day, but this must be titrated slowly to avoid side effects.
Morphine: Not ideal for nerve pain. Ask about alternatives:
Gabapentin/Pregabalin: Better for neuropathic pain.
Nerve Blocks: A pain specialist can inject local anesthetics or steroids near the trigeminal nerve.

You deserve answers and relief. Insist on urgent imaging (MRI/CT) and specialist referrals. Carbamazepine doses often need gradual increases, and morphine is rarely effective for nerve pain—advocate for alternatives like gabapentin or nerve blocks. If your current doctors are stumped, escalate to a hospital-based neurology or pain team.

This pain is not “all in your head”—it’s real, and there are treatments. Keep fighting until you find a doctor who takes it seriously. Let me know if you need help drafting emails/scripts for your appointments. Hope this will help you. You’re not alone.

I dont know how to thank you for that reply, I truly truly am glad you did.
I rang my Dr today but no appointments so went to 111 but they could not help but did get me a phone call with a Dr tmrw.
I have what you have said ready to ask for help.
I feel that each day this pulsing pain is taking a bit more of me away, I just want the pain to go away, I am scared as it gets worse as evening comes and I know the pain scale is out the roof at night for some reason.
I will let you know what happens with doctor tomorrow.
thank you as I think i dont know how much i can take of this constant pulsing pain, so debilitating.
thank you h

 

[Female@over50s]

You should demand advanced imaging, MRI with FIESTA/CISS Sequences. This specialized MRI can detect nerve compression by blood vessels (common in TN) or structural issues. CT Scan: Rules out residual infection, bone fragments, or abscesses from the extraction. Ask your GP/ER doctor: “Can I get an MRI with trigeminal nerve protocols to check for vascular compression or nerve damage?”“Can we increase the carbamazepine dose now instead of waiting 10 days?”

Keep a diary tracking: Pain intensity (scale 1–10). Triggers (e.g., touching face, eating, wind). Medication timing/effectiveness. This helps doctors identify patterns and adjust treatment.

Carbamazepine: 100mg 2x/day is a low starting dose for TN. Most patients require 200–400mg 2–3x/day, but this must be titrated slowly to avoid side effects.
Morphine: Not ideal for nerve pain. Ask about alternatives:
Gabapentin/Pregabalin: Better for neuropathic pain.
Nerve Blocks: A pain specialist can inject local anesthetics or steroids near the trigeminal nerve.

You deserve answers and relief. Insist on urgent imaging (MRI/CT) and specialist referrals. Carbamazepine doses often need gradual increases, and morphine is rarely effective for nerve pain—advocate for alternatives like gabapentin or nerve blocks. If your current doctors are stumped, escalate to a hospital-based neurology or pain team.

This pain is not “all in your head”—it’s real, and there are treatments. Keep fighting until you find a doctor who takes it seriously. Let me know if you need help drafting emails/scripts for your appointments. Hope this will help you. You’re not alone.

I wondered if you could help on drafting what I need to say to dr or dentist.
saw G.P Doctor yesterday, she has upped carbamazepine by 1 x tablet a day, so now on 3 x 100mg carbamazepine day, she will ring me in 1 week to see how doing and if need be up it again, as doesnt want to up too fast.
I asked for ct, she said only dentist can send for that, and I havnt been back to them. does this mean I need to go and request ct referral via them? I thought they could only refer for panaramic xray which I've had, or does that no show if nerve damaged? or left over bone?
if bone resting on nerve can it be removed?
I asked G.P Doctor for the MRI and she said only get that if going for surgery.
very confused and cannot come to terms with what is happening, and the pulsing psin, and sometimes it is like pressure, heavy pressure, it's awful. what should I do?
gp dr said no to gabapentin and other meds as she said they dont work.
morphine stops on sunday.
I dont know , just struggling.
what do I say to dr or dentist, I have not told dentist yet as all this from the difficult extraction.
what do I say or do?
thank you for helping.

 

[Female@over50s]

wanted to give a confusing update.
spoke to dentist today and they referred me to hospital oral surgeon 2 weeks ago, the waiting list is 18 weeks plus!!!! dentist said it is not trigeminal neuralgia because that is usually on the lower jaw and this is upper jaw.
she says I have osteoarthritis and this could mean a problem with bone at extraction and the 4 drs I have seen are not dentists so she knows what it isnt

I am still in pain, it pulses and even feels like pressure like someone has their foot hard on my jaw, face, head.
I am still on 3 x carbamazepine daily 100mg and feeling very low, now I am more confused and want pain to go
my G P Dr is not back til a week and dentist wants a panaramic xray.
is this normal all this

 

[Kiper the lab guy]

Sorry I'm bit busy lately, things got pile up at my lab, so I'm not check this Forums frequently, I’m so sorry you’re going through this, about what your concern:
1. Start with the Severity of Your Pain:
“The pain is unbearable and worsening every day, especially at night. It feels like a constant pulsing heartbeat in my face, temple, and ear. The morphine and carbamazepine aren’t working—I’m desperate for help.”
2. Demand Immediate Action:
“I need urgent imaging (MRI or CT scan) to rule out nerve damage, vascular compression, or infection from the extraction. Can you refer me for this today?”
“Please escalate my case to a neurologist or pain specialist immediately. This is an emergency.”
3. Address Medication Failure:
“The carbamazepine dose (100mg 2x/day) is too low. Can we increase it now instead of waiting 10 days? I’ve read that trigeminal neuralgia often requires higher doses.”
“Morphine isn’t helping nerve pain. Can we try gabapentin, pregabalin, or a nerve block?”
4. Mention the “Heartbeat” Pulsing:
“The pulsing in my face and ear feels like a heartbeat. Could this be vascular compression or pulsatile tinnitus? I need this investigated urgently.”
5. Insist on Next Steps if They Hesitate:
“If you can’t help me today, I’ll need to go to the ER. I cannot live like this any longer.”

---

If the Doctor Still Doesn’t Help​

Go to the Emergency Room (ER):
Say: “I have severe facial pain unresponsive to morphine, suspected trigeminal neuralgia, and need urgent imaging and neurology consult.”
ERs often have on-call neurologists who can order MRIs or CT scans immediately.
Prepare a Pain Diary (Example Below):
Show them this log to highlight patterns and urgency:

Time	Pain Level (1-10)	Symptoms	Medications Taken
8:00 AM	7/10	Pulsing in temple, ear throbbing	Morphine 5mg
1:30 PM	9/10	Burning, heartbeat in face	None (wore off)
8:00 PM	10/10	Pain radiates to jaw, can’t sleep	Carbamazepine 100mg

---

What to Ask For​

Imaging:

• MRI with FIESTA/CISS sequences (to check for nerve compression).
• CT scan of the extraction site (to rule out bone fragments/infection).
• Specialist Referrals:
  • Neurologist (for trigeminal neuralgia or nerve damage).
  • Pain Management Specialist (for nerve blocks or better medications).
  • ENT (to investigate the pulsating ear/temple sensation).
• Medication Adjustments:
  • Increase carbamazepine to 200–400mg/day (common TN starting dose).
  • Switch morphine to gabapentin/pregabalin (better for nerve pain).

---

At Night, When Pain Peaks​

Distraction Techniques:

• Ice packs or warm compresses (whichever dulls the pain more).
• White noise/music to counter the pulsing sensation.

Gentle Pressure:

• Press a soft cloth against the painful area (avoid triggers like wind/cold).

Mindfulness/Guided Meditation:

• Apps like Calm or Headspace can help you dissociate from the pain temporarily.

---

You Are Not Alone​

Trigeminal Neuralgia Support Groups:
The Facial Pain Association (FPA): www.facepain.org – urgent specialist referrals and 24/7 support.
Trigeminal Neuralgia UK: www.tna.org.uk – connects you with neurosurgical teams.

Your pain is real, and it is not your fault. If the system fails you tomorrow, go straight to the ER and refuse to leave until they take action. You have the right to advocate for yourself—bring this message with you if you need backup.

 

[Female@over50s]

thank you so much for the detailed reply which I did read to dr.in the uk sadly it doesn't work as good as it sounds where you are as the NHS isnt as progressive as what you wrote.
However I did see a Speciality dr and he did listen to me and did and said the following.

He said it is nerve damage from where tooth extracted but that it is misfiring and healing itself.
he has upped the carbamazepine to 200mg x 4 times a day.
Naproxin 250mg x 3 times day
Amitriptyline 10mg at night x 1
and re referral gone to oral surgery department at hospital.
he does not want xrays as he said they will show the trigeminal nerve but not the damage on the end which is where he thinks it is on one of the small end ones.
so I tried the medication yesterday and although bit dizzy I had no pain last night, some pulsing but oh wow I cannot say how good I managed to sleep for the first time in ages without pain.

hospital referral will take up to 3 months as I cannot afford to go private.

early days as only started new meds yesterday, I pray and pray this works and it really is healing.
what do you think?

 

[Female@over50s]

thank you so much for the detailed reply which I did read to dr.in the uk sadly it doesn't work as good as it sounds where you are as the NHS isnt as progressive as what you wrote.
However I did see a Speciality dr and he did listen to me and did and said the following.

He said it is nerve damage from where tooth extracted but that it is misfiring and healing itself.
he has upped the carbamazepine to 200mg x 4 times a day.
Naproxin 250mg x 3 times day
Amitriptyline 10mg at night x 1
and re referral gone to oral surgery department at hospital.
he does not want xrays as he said they will show the trigeminal nerve but not the damage on the end which is where he thinks it is on one of the small end ones.
so I tried the medication yesterday and although bit dizzy I had no pain last night, some pulsing but oh wow I cannot say how good I managed to sleep for the first time in ages without pain.

hospital referral will take up to 3 months as I cannot afford to go private.

early days as only started new meds yesterday, I pray and pray this works and it really is healing.
what do you think?

I also told this GP doctor that I felt nobody was listening to me that something is wrong. He apologised that nobody had listened to me.

 

[Kiper the lab guy]

I’m so glad you finally found a doctor who listened and took your pain seriously—this is a huge step forward, and the fact that you slept without pain last night is a promising sign! Nerve damage from the extraction, with misfiring nerves that are (slowly) healing.
Carbamazepine: Increased to 200mg 4x/day – this is a standard dose for nerve pain and aligns with trigeminal neuralgia protocols.
Naproxen: 250mg 3x/day – reduces inflammation that might be irritating the nerve.
Amitriptyline: 10mg nightly – helps calm nerve signaling and improves sleep.
Referral to Oral Surgery: Even with a 3-month wait, this is critical to rule out lingering issues (e.g., bone fragments, hidden infection).
Medications Target Nerve Pain: Carbamazepine stabilizes overactive nerves. Amitriptyline helps block pain signals. Naproxen tackles inflammation that could be pressing on the nerve.
Specialist Validation: Confirming nerve damage and apologizing for your previous dismissal is huge—it means you’re finally on the right path.
Immediate Relief: Reduced pain and better sleep suggest the nerve is calming down.
Oral Surgery Referral: Use the 3-month wait to stabilize on meds. If pain persists, the surgeon can explore: Nerve decompression (if compression is found). Steroid injections to reduce inflammation.
The specialist is likely prioritizing symptom control first, as small nerve injuries (e.g., from extraction) often don’t show on scans. However, if pain persists after 4–6 weeks: Push for an MRI with FIESTA/CISS sequences to rule out vascular compression or neuroma (nerve tumor). Ask for a 3D CT scan of the extraction site to check for hidden bone fragments.
You’re finally being heard, and the medication tweaks are a strong start. Healing is possible, but it requires patience (as frustrating as that is). Celebrate small wins—like that first pain-free night!
If the NHS wait feels unbearable:Contact the hospital’s PALS (Patient Advice and Liaison Service) to escalate your referral. Write to your MP about NHS delays – sometimes political pressure speeds things up.
You’ve already shown incredible resilience. Keep advocating for yourself—you’re on the path to recovery.

 

[Female@over50s]

I’m so glad you finally found a doctor who listened and took your pain seriously—this is a huge step forward, and the fact that you slept without pain last night is a promising sign! Nerve damage from the extraction, with misfiring nerves that are (slowly) healing.
Carbamazepine: Increased to 200mg 4x/day – this is a standard dose for nerve pain and aligns with trigeminal neuralgia protocols.
Naproxen: 250mg 3x/day – reduces inflammation that might be irritating the nerve.
Amitriptyline: 10mg nightly – helps calm nerve signaling and improves sleep.
Referral to Oral Surgery: Even with a 3-month wait, this is critical to rule out lingering issues (e.g., bone fragments, hidden infection).
Medications Target Nerve Pain: Carbamazepine stabilizes overactive nerves. Amitriptyline helps block pain signals. Naproxen tackles inflammation that could be pressing on the nerve.
Specialist Validation: Confirming nerve damage and apologizing for your previous dismissal is huge—it means you’re finally on the right path.
Immediate Relief: Reduced pain and better sleep suggest the nerve is calming down.
Oral Surgery Referral: Use the 3-month wait to stabilize on meds. If pain persists, the surgeon can explore: Nerve decompression (if compression is found). Steroid injections to reduce inflammation.
The specialist is likely prioritizing symptom control first, as small nerve injuries (e.g., from extraction) often don’t show on scans. However, if pain persists after 4–6 weeks: Push for an MRI with FIESTA/CISS sequences to rule out vascular compression or neuroma (nerve tumor). Ask for a 3D CT scan of the extraction site to check for hidden bone fragments.
You’re finally being heard, and the medication tweaks are a strong start. Healing is possible, but it requires patience (as frustrating as that is). Celebrate small wins—like that first pain-free night!
If the NHS wait feels unbearable:Contact the hospital’s PALS (Patient Advice and Liaison Service) to escalate your referral. Write to your MP about NHS delays – sometimes political pressure speeds things up.
You’ve already shown incredible resilience. Keep advocating for yourself—you’re on the path to recovery.

I am making a note of how I am daily which includes night time and sleep I am finding that my head kind of diesnt feel like mind, almost heavy head and have dizziness at the moment which is awful but I'm presuming it is because the carbamazepine has been doubled and my body is trying to get used to the meds. it's like fuzzy head with dizziness and tonight have slight pressure in head and extraction site but trying to ignore with cold pads to get it under control. this pressure feels like a dragging sensation.
dr said he would ring me back in a week to see how I am progressing which is Friday, and I have signed off work this week which I had no choice as cannot cope. I really have everything hoping this nerve is repairing itself as Dr said and im feeling very down with it all, I do not feel like the person I was before this, and all from an upper molar extraction. life has changed .

 

[Female@over50s]

six days on from carbamazepine being doubled from 100mg 4x day to 200mg 4 x day, cannot say I feel much different. still have awful dragging sensation in head and face and by 7 pm at night it is horrid and I try and massage it and keep it cool.
Am I being to impatient for the carbamazepine to work with it being 6 days since doubled? I am struggling with all this, as just want to be me.

 

[Female@over50s]

I thought I would update to today.
day 11 of carbamazepine being doubled from 400 mg to 800mg day and taking naproxin 250mg 3x day and 1 x 10mg amitriptyline at night.
I am now signed off work sick, which is depressing in itself, first time having even a day off in 8 years.
I am coping better and pain has reduced, but I have evening where the pulsing is there and I get the pressure in my face or head throughout the day whenever I'm due to take meds but the night time I keep the tv on longer as cannot cope with sound and sensation of pulsing alongside titinus in ears all day everyday.
new thing 2days ago was skin in areas where I have eczema was red and itchy and not good but calmer today.
I know one of the drs i saw said this is misfiring and repairing itself and could take a few weeks, well it's a few weeks and no change and now not working, or driving!!!
I have my first holiday to Spain booked for june in 6 years and just want to be able to relax have a drink and sunbathe and at moment I cannot get through a single day without all the pulsing and why?
no appointment from hospital and thsts an NHS waiting game, and I could try and get a credit card and try private but dont know how I do that, who do I go to for seeing.
worn out

 

[Female@over50s]

day 14 of all the new upped medication and failing.
been dizzy on and off last two days.
pulsing back in head and temple and jaw on and off, no full break and ears have the horrid sensation and pressure is back.
feel like its getting worse again day by day and was hoping to get back to work Monday.
I'm not coping. this isnt me and I cannot handle this way of life.
I havnt got through one full day yet.
its horrible!

 

[Female@over50s]

I’m so glad you finally found a doctor who listened and took your pain seriously—this is a huge step forward, and the fact that you slept without pain last night is a promising sign! Nerve damage from the extraction, with misfiring nerves that are (slowly) healing.
Carbamazepine: Increased to 200mg 4x/day – this is a standard dose for nerve pain and aligns with trigeminal neuralgia protocols.
Naproxen: 250mg 3x/day – reduces inflammation that might be irritating the nerve.
Amitriptyline: 10mg nightly – helps calm nerve signaling and improves sleep.
Referral to Oral Surgery: Even with a 3-month wait, this is critical to rule out lingering issues (e.g., bone fragments, hidden infection).
Medications Target Nerve Pain: Carbamazepine stabilizes overactive nerves. Amitriptyline helps block pain signals. Naproxen tackles inflammation that could be pressing on the nerve.
Specialist Validation: Confirming nerve damage and apologizing for your previous dismissal is huge—it means you’re finally on the right path.
Immediate Relief: Reduced pain and better sleep suggest the nerve is calming down.
Oral Surgery Referral: Use the 3-month wait to stabilize on meds. If pain persists, the surgeon can explore: Nerve decompression (if compression is found). Steroid injections to reduce inflammation.
The specialist is likely prioritizing symptom control first, as small nerve injuries (e.g., from extraction) often don’t show on scans. However, if pain persists after 4–6 weeks: Push for an MRI with FIESTA/CISS sequences to rule out vascular compression or neuroma (nerve tumor). Ask for a 3D CT scan of the extraction site to check for hidden bone fragments.
You’re finally being heard, and the medication tweaks are a strong start. Healing is possible, but it requires patience (as frustrating as that is). Celebrate small wins—like that first pain-free night!
If the NHS wait feels unbearable:Contact the hospital’s PALS (Patient Advice and Liaison Service) to escalate your referral. Write to your MP about NHS delays – sometimes political pressure speeds things up.
You’ve already shown incredible resilience. Keep advocating for yourself—you’re on the path to recovery.

have no further progress in reduction of pain, still pulses and jaw aches and extraction site draws the pain.
Taken off naproxen today and hope that means the ringing in my ears, horrible skin and weaker bladder will go back to normal!
carbamazepine upped by another 200mg as I'm not getting through one single day without pain.
now in carbamazepine 5 x 200mg day.
I am literally praying it helps.
upped amitriptyline to 20mg at night too.
nothing from oral and maxillary surgery dept. told that could be 30 weeks waiting list.
rang the secretary and left message to find out but no reply still.
its 17.47 and I have to lay on my bed with the drawing achy pain in the tooth extraction site which is into both temples. this is just no life
i know other Dr said misfiring nerve and 2 weeks it will be fine. well another 2 weeks came and went. worse not better.

 

[Female@over50s]

Next update.
Still on 5 x 200mg and only been on them less than week and resting on Good Friday as dizzy and feel rubbish and still aching in temples and jaw. I massage face to try and relieve pain.
wierd day as feeling awful and massaged extraction site and thought I tasted anaesthetic, enough to make me put a tissue in my mouth, very bizarre as I'm nearly 2and half months since extraction on second in molar.
wish I had better news to write but todays a bad day , still waiting for one single good day.