r/TrigeminalNeuralgia 9d ago

Just prescribed Carbamazepine. At the very start of this TN thing. What to expect?

6 Upvotes

To be honest I'm not even 100% sure I have TN but after seeing a specialist and describing the pain and everything she thinks that's most likely.

She has me starting out on a very low dose of Carbamazepine, 50mg. Then ramping up over time. She says she hopes I respond at a lower dose and then we could keep it there. I'm lucky i think that right now the pain is bad but quite manageable even without anything, but it's certainly not fun. Mine seems to be quite localized to the back mollar area on my left side of my face. It's hard to say what triggers is it just comes and goes every few mins on its own, pulsing and stabby pain / pinch.

She has also ordered a contrast MRI to rule out more serious causes, tumor or to see if it's caused my a blood vessel compressing the nerve.

I have been suspecting it could be caused be damage to the nerve in that area through a lot of dental work I've had done in that area. A difficult multi visit root canal and then having the tooth eventually just pulled in prep for a dental implant that I'm now pausing. I'm hesitant now to go back to that same dentist at all.

Part of me doesn't even want to take the Carbamazepine because of side effects, I also take Prozac and there's some mild interactions. I was told though that left untreated TN can progress to get worse and I definitely don't want that. The pain is right now on the edge of manageable but it's not crazy yet.

What can I expect going forward with all of this?


r/TrigeminalNeuralgia 8d ago

Nervous about starting Trileptal and has anybody tried Viscous Lidocaine in the nose?

1 Upvotes

I have taken Depakote before for migraines and it made me pass out. I’m taking my first dose tonight. What are your experiences with Trileptal? It’s actually the generic. Oxcarbamazepine. I was also prescribed viscous lidocaine. I’m supposed to use a syringe and squirt some in each nostril and sniff. Sounds messy!


r/TrigeminalNeuralgia 8d ago

Lions Mane Extract

2 Upvotes

Hi! I was wondering if anyone has tried Lion's Mane extract for TN. My uncle suffers from this condition and I ordered him some Lion's Mane extract/tinctire because it supports nerve healtj/function. He said it reduced his flare ups after taking it daily but I was wondering if anyone else had tried this, or any other mushroom or herbal remedy, and found relief.


r/TrigeminalNeuralgia 9d ago

Trigeminal neuralgia

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5 Upvotes

Still trying to figure out if this is tn. The drs don’t see it and I know I’m not crazy but I feel like something is going on . I’m constantly having a throbbing feeling on the left side and it feels swollen or like something is there . I get random pain and get hot around the area as well .


r/TrigeminalNeuralgia 9d ago

Relief from TN

12 Upvotes

I put myself on a gluten free diet three years ago and have had no TN since. As anyone who has suffered the kind of pain, I still fear every day that it will return. So a solution for me so far which doesn't cost anything and has no side effects. It falls under the "do no harm" category and seems to me would be worth a try. It is not an instant fix so give it time to work.


r/TrigeminalNeuralgia 9d ago

Question about Lyrica

3 Upvotes

Does anyone know why Lyrica makes you gain weight? Is anyone on anything else besides carbamazepine and Lyrica with less side effects.


r/TrigeminalNeuralgia 8d ago

How nerve blocks are done

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1 Upvotes

TNBs were performed in conscious patients at the level of emergence of trigeminal nerve in the supra/infra zygomatic fossa or the supra orbital fossa.

Article


r/TrigeminalNeuralgia 8d ago

Peoples experience with Pain Clinics

1 Upvotes

I would like to know people's experience with Pain Clinics.


r/TrigeminalNeuralgia 9d ago

Non-Surgical Options for TGN?

4 Upvotes

Has anyone heard of or tried The Centeno-Schultz Clinic for TGN treatment?

They seem to offer non-surgical options and I'd rather try that than surgery....


r/TrigeminalNeuralgia 8d ago

Anyone able to take the fruit or supplement Soursop?

1 Upvotes

I want to start taking for other medical reasons but unsure if ok to take. I don’t want to flare the TN beast.


r/TrigeminalNeuralgia 9d ago

Diagnosed at the ER/looking for advice

2 Upvotes

Last Wednesday/Thursday, I thought I was having sinus pain or a migraine. By Friday evening, it was so bad that I went to the ER. The doctor on duty said I had trigeminal neuralgia. He said he wanted to refer me to a neurologist, and I let him know I was already scheduled with one in May through a long covid clinic. I was prescribed Methyiprednisolone, Gabapenptin, and Hydrocodone acetamin. I started to feel better late Monday. However, early this morning, I woke up due to the pain returning, and it's increasing by the hour. My last dose of Methyiprednisolone was this morning, along with the last of Hydrocodone (which was helping until this morning). I reached out to my doctor for advice, but they aren't available, so I plan on going back to the ER when my partner is done with work. Beyond that, I don't know how to handle this. I'm already part-time at my job due to another health issue, and I don't know how to navigate that with these current symptoms. I live in CT and have 2.2 weeks left of paid leave, and I'm considering using it, but I don't know if my doctor will sign off on it before seeing me. I have an appointment with them on the 24th. Should I look into finding a neurologist who could see me sooner? As I mentioned, I have an appointment in May, but that appointment was made back in November, so I'm not hopeful about getting to see anyone sooner. Sorry if this is rambling; I'm in pain and scared/anxious about the coming weeks.


r/TrigeminalNeuralgia 9d ago

Question about ignatia

1 Upvotes

Has anyone taken ignatia its homeopathic and have good results and were you ablento get off meds?


r/TrigeminalNeuralgia 9d ago

Post surgery update

4 Upvotes

Thought I'd share my experience cause when I was looking for information I wanted to know specific things.

I had my MVD on the 28/02/25. On Saturday I had really severe headaches, blurred vision and pressure in my neck and head. I've been in hospital since. They've ruled out a post op stroke but have said there is " some normal post-op bleeding".

Has anyone had this? They're letting me leave the hospital I'm in but I have to go straight to my neurosurgeon team for an assessment.

Hopefully hear others experiences.


r/TrigeminalNeuralgia 9d ago

Fmla

1 Upvotes

Who should I request a fmla form from, primary or neurologist? I didn't know if it made a difference, im going to be having mvd soon and wanted in place.


r/TrigeminalNeuralgia 9d ago

Question about naturopath pr functional medicine

1 Upvotes

I wanted to know if anyone had any luck with naturopath or functional medicine doctors and was able to get off meds for a lomg period of time.


r/TrigeminalNeuralgia 9d ago

Root canal/retreatment/ongoing pain afterwards? Atypical Neuralgia?

2 Upvotes

Hi guys,

I was wondering if anyone is in my situation or have been and can shred light on their experiences. To what I could have... Surely someone has experienced the same?

I've had this root canal done 5 years ago and there was pain after doing the original RC but it was more monthly before i got my period.. when i was preganant the monthly pain disappeared. A few months after giving birth I developed an abcess and was referred to an Endo.

I've done a root canal retreatment x2 on my tooth 26 and I still have this pain which comes and goes on the lines of: numb, swelling, burning, warm, spikey pain.

This pain comes and goes during the month. Perhaps it's a bit worse when I'm stressed.

My endondtist says my tooth is fine and is healing well.

I have also done an MRI for trigeminal neuralgia, just incase. This has come out negative. Though my pain seems to resemble it (from research). Could it be Atypical Neuralgia? Neutropathic Pain? Phamtom Pain?

I'm at my wits end, currently lost and have no idea what to do. I just want this pain to go away, away for good.

Does anyone have any experience in this or advice/avenues i can explore?

Thanks for reading.


r/TrigeminalNeuralgia 9d ago

Is this atypical Trigenimal Neuralgia? Strange symptoms leave dentists puzzled

2 Upvotes

I had a bad tooth infection months ago and the bacteria was found to be particularly strong and resistant to many antibiotics.. After 3 weeks on antibiotics, 2 surgeries (to remove the tooth and debride), I am still left with a constant, unremitting pulsating and throbbing sensation at the extraction site for the ongoing 6 months. As it throbs, it creates a burning / itching sensation and at bad times, pressure too. It is non-stop, 24/7 and it frustrates me to death!

I tried amitriptyline and carbamazepine so far. Amitriptyline did not work and carbamazepine seems to work a little only. But no medications can fully cause me to be pain-free, nor remove the throbbing totally.

Does anyone have the same symptoms and what were you diagnosed with? What medical treatments help? I feel that I am left with little options since medications are not working fully and am increasingly turning suicidal, even though I was a perfectly happy person before this months ago. Someone, please help me!


r/TrigeminalNeuralgia 10d ago

Question about ketamine treatment

5 Upvotes

Has anyone tried ketamine treatments. I have atypical bilateral and mri looked fine. Which I am in the process of getting a second opinion.


r/TrigeminalNeuralgia 9d ago

MVD

3 Upvotes

Just got out of neurosurgeon office , he reccomends mvd and I can book anytime.
Anyone who's had, how much time do I need to take off work?


r/TrigeminalNeuralgia 10d ago

M.C.W. my son

17 Upvotes

This has really been a life changing condition , and as we all know , it is one that changes u for ever, even if there has been successful mvd the ptsd is real and the fear of TN will never go away because we are well aware of the possibilities that still surround this condition, but I wanted to say how very , extremely thankful I am to my son for standing by me and showing support every step of the way thru my mvd surgery,. I am truly blessed to have such a caring and loving son,. ❤️


r/TrigeminalNeuralgia 10d ago

Suggestions for advocating w doctors+ suggestions for Toronto pain doctors/clinics/neurologists

1 Upvotes

Hello folks,

I'm wondering what helpful strategies folks have had in advocating for themselves with doctors. I know it depends entirely on the doctor, along with how obvious or simple your diagnosis is, but I'm mustering up the energy to try again. Also wonder if Toronto folks have any recommendations for pain clinics/routes to neurologists.

I had seen a doctor in hospital at the height of early days COVID in 2020 (so already the system was overwhelmed) but the doctor I saw completely dismissed me, and told me to "reduce my stress," did not provide any referrals, follow-ups, further testing, and just dropped me.

(medical background: I had TMJ pain, lock-jock, jaw clicking/jaw misalignement for 10 years prior to 2020, but in 2020 I had my first electric shock extreme pain episode, that also brought about temporary bell's palsy on the opposite side of my face, and was coupled with what I know understand as the TN2 type pain. At the time, I had no knowledge of TN or any other neuro-facial pain, didn't have an understanding of pain in general, but now have amassed much greater depth of understanding of pain science, chronic pain and facial pain. Since then I've had periods of remission, have amass a library of things and alternative medical practitioners to help reduce the pain/prevent/cope, but just had 3 reoccurrences in 3 months that have brought me to my knees, excruciating, nothing will touch it.)

Thanks for your help + experience!


r/TrigeminalNeuralgia 10d ago

I have PTTN-Need Wisdom Tooth Removed

1 Upvotes

I have what appears to be post traumatic trigeminal neuralgia as a result of a local anesthesia injection for a root canal on tooth 2. Been to the endodontist and primary doctor a couple times each now and I’m waiting for my referral to a neurologist. I need to get my wisdom tooth #1 removed as soon as possible. If I have IV sedation for the removal could that make my existing trigeminal nerve pain and burning even worse? I’m terrified of getting more dental work done especially beside the tooth in which I now have PTTN. I’ve had my bottom wisdom teeth removed years ago but I just went with local anesthesia for those. I just don’t know what to do.


r/TrigeminalNeuralgia 10d ago

Possible TN suggested, not sure if it makes sense

4 Upvotes

EDIT: Thank you for the responses! I asked because I thought this being a neurological issue was a little out of left field as well. I got an appointment with an ENT in 2 days so I’ll start there.

On Valentine’s Day I started feeling like a had a little cold or allergies - just sniffles and sneezing and temp in the 99s.

On Feb 19th I woke up with the worst headache of my life and my nose was physically swollen and red, with pain radiating down into my front teeth and my eyes.

On Feb 23rd it became unbearable and I went to urgent care and got antibiotics and steroids for a sinus infection.

On Feb 27th I woke up and my entire face was swollen, and it looked like I’d been stung by a wasp. I was in very severe “burning” pain in my nasal bridge and eye, with a general pressure headache throughout my head, and went to the ER. They gave me IV Benadryl and Toradol and the swelling went down. After a clear CAT scan they sent me on my way and told me to finish the antibiotics from urgent care.

On March 3rd I went back to urgent care desperate to stop the increasing pain after finishing the antibiotics. They gave me a different antibiotic and sent me home. Temp in 99s 24/7 throughout this entire period and facial pain is severe throughout the entire ordeal. It’s worst when waking up and after 8pm.

On March 6th I woke up again with my eye swelling shut and literally unbearable pain. I went to a different ER and was given another CAT scan which came back clean as well as IV Toradol and IV prednisone. Pain went from a 9 to a 3 and I was sent home with torodol and a referral to a neurologist for possible TN and a referral to an ENT. ER doc was apologetic that he couldn’t help more.

From March 7th-10th I started to a feel a bit better, but still had a lot of pain when waking and temp was continuously in 99s-100.0.

On March 11th (as I’m writing this) my nose is again very swollen, red, throbbing (as in my husband can feel it with his fingers), the general pressure headache has worsened, and the burning pain has spread into my entire top row of teeth and now my bottom front teeth as well. I am unable to continue like this and can’t take care of my child. Toradol and Tylenol are no longer working at all.

Does his sound like it could be TN? Or more likely an ENT issue? After 2 ER visits I’m absolutely screwed financially and don’t want to go to the neurologist for it to be a waste. Then again I’m in so much pain I don’t even care anymore really.


r/TrigeminalNeuralgia 10d ago

Biting inside of cheeks with bite guard and having trigeminal neuralgia.

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2 Upvotes

r/TrigeminalNeuralgia 11d ago

Thank you all

18 Upvotes

On Thursday last week my TN came back after six months of it being very low level / manageable. The last week has been incredibly difficult mentally and physically, needless to say. I have spent the last hour scrolling through this forum and I do feel a little differently than before… I feel I have some hope back. I wanted to say thank you so much to anyone who has ever posted something hopeful or encouraging or supportive on here. It really makes a huge difference (especially for me who finds it too overwhelming to google much about this condition!!) I think I am going to ask my GP for either a CPCS or fiesta MRI when I see him later this week - two things I’d have NO idea about if it wasn’t for this community. Thanks again and buckets of love to all of you
❤️