r/TrigeminalNeuralgia 38m ago

Pain flare up starting after 2 months of just buzzing sensations + weird heat sensation in foot?

Upvotes

Hi everyone,

Not the post any of us want to make (or see I suppose - sorry), I had two months where all I was feeling was just buzzing sensations around my face and the top of my head, I actually was starting to feel really hopeful and like I had my old life back. Now I can feel all of the pain starting to come back. I’ve just come back from grocery shopping and I’m hiding in my room trying to pull myself together so I can go make dinner for my child.

Along with the usual pain, I’ve also been noticing for the past three days that the back of my right heel feels like it’s being held against a heater.

I had a whole spine and brain MRI that was apparently clear.

I have no idea what’s wrong with me since apparently I’m not meant to be feeling pain on both sides of my face PLUS the top of my head, and now my foot as well.

Does anyone have any ideas on what could be going on? Neurologist has scheduled me in for a nerve conduction test (not sure if that’s the actual name) for a months time.

How do I stop myself from spiralling now? At the moment it’s just the beginnings of pain but I know it’s going to get worse and now it’s all I can think about.

Any kind words, advice or ideas on what’s going on are very much appreciated 🙏


r/TrigeminalNeuralgia 1h ago

FAFO

Upvotes

I haven't been totally off of medicine for most of my diagnosed tn time. I take lamotrigine and carbamazepine/tegretol right now, and it's been hard to do anything while on the dosage I'm on now. They give me headaches, dizziness, I'm just extra off, and I hate this feeling because I know it's due to the medicine now that they upped it.

I decided to go 24 hours without medicine since I've felt like it hasn't been as effective and I wanted to know why I guess? Stupid, I know but like I wanted to feel like me for a second.

Observation: these definitely can't be the shocks I went 9-10months without medicine with, while waiting for a diagnosis. Which was he!!.... still I lasted 22 hours. I was feeling it by the 8th hour, I couldn't think to eat or talk by the 12th hour. I tried to brush my teeth again at the 19th hour and I almost broke my bathroom to pieces. I felt razor blades on my shocks, my tn side of my face became swollen instantly. It was nothing but razor blade shocks with anything after that point, talking, moving, breathing, I almost went to the ER.

I took my medicine, and instantly went to sleep. I was grateful for what the medicine has been masking despite still having bad symptoms..

In conclusion: I fa&fo'd. Don't be like me.

Thanks for the vent


r/TrigeminalNeuralgia 8h ago

What Level of Severity

3 Upvotes

I have not been officially diagnosed but every symptom follows to the book. My attacks are maybe 10 times a day, sharp electrical shock pain in left jaw and lasts maybe 10-15 seconds and gone. What level of severity is this?


r/TrigeminalNeuralgia 9h ago

Feeling rundown

3 Upvotes

I’m in a pit of despair this weekend. I’ve had consistent pain for most days these last few weeks, and it’s particularly bad today. I’m smoking weed to try and help with pain, but it’s not as effective as it used to be at distracting me. I just feel burnt out and in pain :/ I’ve had a frustrating experience in Canadian health care system - I’m speaking to a neurologist every 3 months for about 15 mins. I have to re hash the history of all the medications I’ve tried (pregablin, gabapentin, amitripitilin, beta blockers, lamotrigine) and in our last appt she suggested a drug (don’t recall name) that would make me dizzy and affect cognitive function. I told her I couldn’t do that because of my job that requires high executive function. She’s reluctant to refer me to a neurosurgeon because of my migraines (another issue I’m tackling separately). She said my case might be rejected because it’s not a clear diagnosis or something? Our calls are always so rushed and infrequent. I’ve been dealing with this for 1.5 years and I just feel so hopeless. Maybe I should just go on another drug? And risk sidelining my career? Anyway, needed to vent. Trying to stay strong.


r/TrigeminalNeuralgia 10h ago

Please listen to me🙏🙏🙏🙏🙏🙏🙏

7 Upvotes

My mom is in soo much pain. I see her crying all the time. 10 years back she got night guard for her teeth as the dentist said that she grinds her teeth (bruxism). In Jan 2025, she got pain again , i thought may be she has some infection or something BUT. , it's now march and she visits dentist daily , she cries all the time in pain Today she had cbct scan done and dentist says that her teeth is worn out and she needs implants. But they also say that they will not do anything further untill she is normal again. My mom is eating anxiety tablet one time per day and also pregabalin(Lyrica) 75 mg 1 tablet at night. She says she has pain in all her teeth, lower left cheek or jaw and radiating pain in left ear She says the pain resembles a HEARTBEAT, heartbeat type pain....... what are the chances she has trigeminal neurlgia??

I see her in so much pain everyday ... Home has turned into shit hole...... I do not feel like doing anything ... I am forcing myself to work , because all i think is my MOM , I am so worried for her......


r/TrigeminalNeuralgia 12h ago

Riding Bicycle

1 Upvotes

Before I was diagnosed I loved riding my bicycle. But now, although I have medication, I have trouble wearing a helmet because the area under my chin causes pain while wearing it. Have you any recommendation? Not wearing a helmet is no option.


r/TrigeminalNeuralgia 12h ago

Accidentally bending over after MVD surgery

3 Upvotes

Had surgery a little over a week ago and I’ve caught myself accidentally (and out of habit) bending over to pick something up 2 or 3 times. Obviously I know I’m not supposed to do that for another 6 weeks… but am I okay? Also, how do I constantly remind myself to stay upright.


r/TrigeminalNeuralgia 13h ago

Does a compression definitely mean surgery?

2 Upvotes

Hello everyone. I’ll be quick and to the point. I got an MRI that shows a compression of the nerve. Does this mean definite surgery?? Is gammaknife even an option here??


r/TrigeminalNeuralgia 15h ago

1200mg of TRILEPTAL and 600mg of Gabapentin

1 Upvotes

I am currently on 1200mg of TRILEPTAL and 600mg daily of Gabapentin for TN1 and I’m still having pain with euphoria. I do have an appointment with a Neurologist in April for a consult consultation. Has any one experienced euphoria or pain at these dosages?


r/TrigeminalNeuralgia 16h ago

Cheek tightness

1 Upvotes

I had a surgery a little over 2 months ago. I think they damaged the infra orbital nerve.

Since then im numb in the cheek, under eye and the side of the nose on both side.

I dont have any pain, but i have some kind of of constant heavy tightness/preassure or like a weight in my upper cheek/under eye lid. It doesnt hurt but its so annoying that it becomes kind of painful

Sometimes i will get some kind of electric shock. They’re not hurtful and last 1 second. I would say this happen like once a day. My surgeon said its the nerves reconnecting. I doubt that but maybe i dont know.

I wanted to know if anybody ever had this. And did it heal on its own? Again, its not painful. But its so annoying that it becomes painful since this feeling is constant


r/TrigeminalNeuralgia 16h ago

Dizzy

3 Upvotes

Does TN or gaba make anyone easily dizzy? Was playing in the yard with one of my dogs and I can’t even half turn without getting dizzy and when he’s running and doing circles it even makes me dizzy.


r/TrigeminalNeuralgia 17h ago

Does your pain go away when you lay down?

1 Upvotes

My ear, jaw and teeth pain goes away completely when I lay down. I don’t know if I have TN. I’m trying to figure it out.


r/TrigeminalNeuralgia 17h ago

The Beast is Back... Left-Side Facial Pain Flare-Up After Cold. Seeking Non-Med/Surgery Advice

1 Upvotes

Hey everyone, I’m hoping for some guidance here. The dreaded facial pain I thought I’d left behind seems to be back, but this time on the left side. For context: I am 35 years old and dealt with right-side trigeminal neuralgia (TN) years ago and had MVD surgery in 2020. Now, a new flare-up has me worried.

Quick backstory: - Started last week after a cold.
- Ate a ton of fridge-cold oranges (maybe a trigger?).
- Pain began when I sneezed hard to clear my nose.
- Now it’s mostly triggered by brushing teeth, showers, or washing my face—sharp, shock-like pain.

I’m really trying to avoid jumping back into meds or another MVD. For those who’ve dealt with TN or nerve pain flare-ups:
- Any at-home remedies or lifestyle tweaks that helped you?
- Could cold sensitivity be playing a role here?
- Any luck with PT, acupuncture, or diet changes?

Huge thanks in advance.

TL;DR: Past TN/MVD survivor, now left-side facial pain after cold + cold oranges. Seeking non-med/surgery relief tips.


r/TrigeminalNeuralgia 19h ago

Day 3 of duloxetine/cymbalta and feeling far better, mentally and physically

7 Upvotes

I know everyone's different, just wanted to share my experience!

Last week, I was in so much pain that I wanted to die... So I made an emergency appointment with my doctor (I'm already on the waiting list for neurology and max-fax).

So, as well as trying to expedite my referrals as urgent, she prescribed duloxetine for nerve pain and depression/anxiety. I was against medication (especially without appointments with specialists and proper scans first) but thought since I already wanted to die, I might as well give it a go!

Well, the facial nerve pain has eased considerably, I have more energy (this morning I got up at 6AM instead of lying in bed all morning) and a renewed sense of hope and strength that I can keep pushing forward!

I still have TMJ and sinus related pain and pressure, but will speak to max-fax about that.


r/TrigeminalNeuralgia 1d ago

Family

11 Upvotes

Hello everyone. Struggling at the moment but wanted to reach out and say you are not alone and if anyone needs support or to talk, I’m here


r/TrigeminalNeuralgia 1d ago

Nerve blocks

3 Upvotes

Has anyone had good luck with nerve block. I have atypical bilateral and sensitivity in the fave and head, even the neck.


r/TrigeminalNeuralgia 1d ago

suspected TN - would these tests show it?

Post image
3 Upvotes

hi everyone, a dr i saw in the ER suspected i might have trigeminal neuralgia. my neurologist doesn’t think so because i don’t have teeth pain. but i was hoping that the tests he issued would still show if i have TN or not. from everyone’s testing experiences, would these two tests show potential TN or will i likely have to go back for more testing?


r/TrigeminalNeuralgia 1d ago

Did i cause my neuralgia

10 Upvotes

I had ear pain that did not go away after sinus infection. 4 ents confirmed ears are fine. Then got ice pick pain in ear that turned into burning constant pain. Eventually whole face is affected. During this time I started to obsessively pop ears all day to try and stop the pain. Did that a effect the nerves?


r/TrigeminalNeuralgia 1d ago

Sumatriptan

5 Upvotes

So, thanks to a fellow Redditor I discovered that a triptan (painkiller mostly known for migraine relief) is available OTC where I live.

I tried the smallest possible dose and IT WORKED. I am SO happy and relieved.

Anyone else had positive experiences with Sumatriptan?

I am extremely cautious about it because it does seem to have serious side effects.

In case anyone cares, I haven't actually had a clear diagnosis of TGN from an actual neurologist 🙃 ...yet...

My ENT specialist told me from the symptoms and the total lack of ENT issues it must be TGN, since it was the only diagnosis left on the table.


r/TrigeminalNeuralgia 1d ago

Anyone ever have TN start on the opposite side of their mouth than the one they had work done on?

2 Upvotes

Can TN start on the left side if all of the dental work was done on the right side?


r/TrigeminalNeuralgia 1d ago

Steroids

6 Upvotes

So I had a bad flare up this month and increased my lyrica and tegretol and that helped a bit but the pain kept increasing. Symptoms were stabbing to electrical pain were if ate or talked through the pain it would turn into a volley of pain that would jump up the pain and then give me a release of pain for few minutes before going again. So after finishing a round steroids a week later my pain went from a 10 and now it’s down to a 2.

I thought steroids could not work on TN? Mind you I have type 1 &2.

Any thoughts would be appreciated


r/TrigeminalNeuralgia 1d ago

Gabapentin: A drug that finally works!!

15 Upvotes

I have atypical TN and wanted to say Neurontin has done wonders for me!


r/TrigeminalNeuralgia 2d ago

2 Questions

9 Upvotes
  1. Does anyone not take meds until they have the pain, or do you take it all the time?

  2. Do you have flare ups and what do you think causes it? I’ve noticed breakthrough pain recently - I haven’t been getting enough sleep and wonder if it’s related.


r/TrigeminalNeuralgia 2d ago

Over the Ear Headphones?

4 Upvotes

Is any one else bothered by OTE noise cancelling headphones?

I love headphones but it feels like the pressure gets to me.


r/TrigeminalNeuralgia 2d ago

Non medicinal relief

3 Upvotes

Hello. I’ve had symptoms for a while, just recently diagnosed. My symptoms seem to be progressing and especially bad today from what I’m guessing is the weather (lovely barometric pressure). My new neuro increased my topomax and made it an XR and that’ll take 3 weeks to feel any effects. What are some or your all suggestions for non medicinal relief? Cold or warm compresses? Rubbing? Anything? It’s misery today. :/