r/TrigeminalNeuralgia

I came here out of desperation and anonymity. I love my husband.

I’ve been with my partner for almost 6 years. He was diagnosed with Trigeminal Nueralgia about 6 months into our relationship. I’ve stayed by his side through all the challenges as he is the one for me. No doubt about it.

He has good days and bad days. We used to have period of a few months where it wouldn’t be bad at all and that was nice. These past couple of years it’s a daily occurrence. We are currently working with a new doctor in a clinic that specializes in this condition which we are seriously hopeful about. There hasn’t been any concrete solution just yet but I’m staying positive for both of our sakes.

I’ve come here to understand how anyone gets through it. Specifically when it comes to physical intimacy. The first couple of years, I would initiate constantly, but with no success. I would then feel rejected, sad. I’d remind myself that it’s not him, it’s his condition and medication. I would get lucky every now and then and he’d make the effort. He’s not able to make out with me without pain, so we can’t. At least, I don’t force it anymore out of guilt. It breaks my heart.

Do you have any advice on how you handle this type of challenge with your partner? I would bring it up every once in a while. My issue is every time
I do, I can see he’s also heartbroken about it. I’m just at a loss here and don’t know how to move forward.

So I went to the ENT for unrelenting pain and pressure on the left side of my sinuses which has been getting increasingly worse over the last 6 months or so. CT was clear which led to this diagnosis. I can’t get in with Neuro until September, so he started me on 100 mg of gabapentin. I am terrified to start it because I know it’s a heavy duty drug. I am 49 F and on hormone therapy as well. I take 10 mg of Lexapro also to help with some of the mood swings from perimenopause. Anyway, I feel like I have a long road ahead of me to find relief and wanted to say hi, introduce myself and thank you all for sharing your stories and experiences.

How are you managing?

Ive had TN (all 3 branches on the RHS) for coming up to 3.5 years now. All caused by a wisdom surgery gone horribly wrong in December 2021.

I was managed by the Maxilofacial team at Royal Perth Hospital from March 2022 until mid last year when I discharged myself as I had so much trauma and I wanted to believe I was crazy rather than having something wrong.

MRI show no compression.

My sinus was ruptured, jaw severely ground down, my TMJ is fucked to say it nicely, as I had the muscles, ligaments and tendons in the RHS jaw calcify and needed to be surgically corrected and stretched.

Ive trialled Lyrica and Gabapentin which didnt do the mental health well as I have horrible mental health conditions (schitzoaffectice Bipolar, BPD, CPTSD and anxiety). The pills helped reduce the frequency of the flare ups but im now 14 days into a 6/10 flare up and ive had 6 massive spikes dropping me for over 5 hours each.

Im a recently single parent of 3 very young disabled children... what the hell am I supposed to do when im in a flare up?!

I caved and begged my GP to refer me back to maxfax and to see neurology but the truth is im scared to have more surgeries, Maxfax suggested freezing the nerve root but what if it goes wrong...who will be there for my babies?

Im 32 and some days i dont want to go on...just because of the pain, ive asked 4 people this week if they will please sledge hammer my face.

Im in Perth , Western Australia and feel so alone. No one understands or even seems to care.

Im in duloxetine 60mg for anxiety and 12.5mg of amitryptaline (only low because ive reacted bad in past)

Heat packs help a little during a flare up, but I usually just try and survive by laying under a hot shower brushing my teeth for hours

Hello! Have been on both of these medications for a while now. Tried normal and prolonged release, the drowsiness they can cause at times is crazy. I can’t have caffeine as this makes flares worse, so struggle to be alert when needed sometimes. Has anyone found the same? If so what has helped you get over this?

Hi, I am a 29 year old female who was diagnosed with trigeminal neuralgia last week after a very severe episode which landed me in hospital. I have never experienced anything like this before. I am now on carbamezipine which has helped the attacks massively but I am left with the “pre attack” sensation which means I am on edge constantly terrified a flare up is coming.

I am wondering what the most common cause is for trigeminal neuralgia amongst everyone? And how people cope with the fatigue and brain fog? I haven’t yet worked out if it’s from the TN attack last week or the side effects of the carbamezipine.

Thank you in advance!

First time poster here, but I'm a lurker. I am feeling despair and I feel like I'm in such a dark, dark place with this pain.

I have bilateral trigeminal neuralgia and I'm in agony.

My neurologist (which I just got in to see this January, it took 9 months to finally get in) and I have worked together and I am on a daily cocktail of: Carbamazepine 1600 mg, amitryptaline 25 mg, pregabalin 150 mg, and baclofen as an emergency medicine up to 60 mg daily. and I'm already on so many other medications for my other chronic illnesses.

I am in agony no matter how much medication I'm on, no matter how much I go up or change or add meds. We are discussing Botox injections, which I'm really afraid of, but I am willing to do ANYTHING to have somewhat of a normal life again.

Thanks for listening to my vent. My life has been changed dramatically since I developed this pain. I just want some normalcy again. All of this is traumatic and I'm very scared.

I have the worst insurance (Kaiser) who won’t budge in terms of letting me even *speak* to a pain specialist. It took me two years to see a neurologist!

So.. I went around the system and was lucky enough to see my aunts friend in another state who is a pain specialist in the south. He gave me advice and Botox in my v2 nerve and told me that if I don’t get MVD sooner rather than later, that the damage is done and no surgery will ever fix it in the future.

Basically, he scared the hell out of me.

Has anyone else’s doctor told them this?

I’m already on 1200mg of Oxcarbazepine and never been pain free.

Do some surgical options work better for TN1 (typical) patients than others? Also does it matter the region or branch of your face affected?

I notice alot of people recommend MVD. My neurosurgeon recommends gamma knife. Should I see another neurosurgeon for advice as well? Any experiences you can share?

I have TN 1 left side in mandibular V3 region.

Wish me luck!

Yall, I’m in so much pain. I work a high stress job, just got promoted and I know it’s making this worse. Didn’t even have time to celebrate, just dealing with this increasingly bad flare that started back up in January and has only gotten worse.

It’s the middle of the night and I need to get up early in the morning to prepare for a presentation that I’ll probably get flack for not finalizing earlier… when I literally have no time during actual work hours to do it.

I feel better when I sleep well, when I exercise. I know this and yet today was 6am to 10pm in front of my computer, taking calls and feeling dread. It’s gotten so bad in the evenings and when I lie down to sleep — just continuous shocks.

I just spent an exorbitant amount of money on a TMJ device too since I had hope for a hot second that this was a jaw issue. Obviously that didn’t work and now the TMJ doc is gaslighting me into thinking I didn’t clearly describe my symptoms when I absolutely talked about the shocks in appointment #1 — and he brushed me off when I said I had a TN diagnosis.

Feeling so annoyed and hopeless. No one who knows me or works with me even knows how bad it is besides my spouse since I’m always so cheery and positive. I’m so upset. This sucks so much. I have an MRI tomorrow. I don’t want to take meds again, which historically haven’t even helped. I don’t want to do surgery. I’m just so sad.

My longest no pain streak was last April to this Jan. I can’t believe I’m back here.

A warm hello to all you brave people on this forum. My mum has just been diagnosed with Trigeminal Neuralgia. I'm sure some of you must have tried some dietary changes to see if it helps with the TN and I'm hoping you will be willing to share your experiences, both successes and failures.

I'm particularly interested in the following areas, but please feel free to share any other thoughts you have regarding dietary changes.

1. What dietary changes did you make?

eg vegan, keto, diary free, gluten free, carnivore, low fat, low salt etc etc

2. How long did you do it for?

3. What was your goal?

eg pain reduction, myelin sheath repair

4. How successful was it, if at all?

5. Do you have any links to medical papers, websites or videos etc about dietary changes and TN?

Thank you in advance for your help with this. I'm really grateful for any info you can provide. My best wishes go out to all you TN sufferers out there - may you get some respite soon.

I know this may sound a little bit weird. However, the use of my sonic toothbrush does apparently make it much worse for my atypical facial pain. Every time I use it on one tooth especially, things go wrong and I’m hurting more so than normal.

After what has felt like forever of dealing with pain, but has somehow only been a year, I scheduled my MVD today at a high-volume TN center to address my mixed TN (I'm aware of the lower success rates for mixed or atypical cases). Now, I'm majorly in planning mode. I'm honestly feeling a little excited? Just relieved to have a plan that *might* work, honestly.

For those of you who have had an MVD, I have some questions:

• How long were you in the hospital? Did you have any complications?
• How out of it were you that first week?
• How long did it take until you felt comfortable not having a caretaker stay with you full-time?
• What was most helpful to you during recovery? I'm going to get a wedge pillow, travel pillow, body pillow, and download some audiobooks so far-- and will set up a meal train
• How long did the nausea last?
• What was the part(s) of recovery that you underestimated?
• Could you bend down (to change cat litter, for example)?

Open to any and all feedback/advice-- thanks in advance!

Hello everyone. I Just had MVD approval! I am now officially on the waiting list for MVD at the Queen Square Gamma Knife Centre in London. Dr. Jonathan Hyam will perform the surgery. I am still in shock, but hopeful that this might restore what TN has taken from me. I want to thank the community here for all the support I’ve received over the past couple of years. I would not have made it this far without your support.

In 2018 i got diagnosed bilateral TN. Both typical and atypical as well as exploding head syndrome. In 2020 i had mvd on my left side worked great this was after maxing out all the carbamezapine etc i could tolerate. gets 80-90% relief on that side. 2026 is here and now my right side is acting up and everything i learned is failing. I learned that neurofen PE would break the breakthrough pain. Not tonight. I took 8hr brufen, 2 panadol and 2 50mg tramadol and 2x 10mg sudafed to shrink the blood vesselsand get them off the nerve. Nothing is working. I dont have access to carbamezapine type meds. Tonight i cant break the breakthrough pain and going to hospital is not an option as ive had all the meds they would give me and more would cause contra-indications. Hospital is alson2hrs away and a 4hr+ wait in the ER.

Are there any pressure points or something i haven't thought of to break through the breakthrough pain. I got the pain down from 10/10 to 7-8/10 i cant sleep i have work tomorrow and cant have the day off. Is there Anything i can do for relief?

Ive been diagnosed with some sort of trigeminal neuralgia plus sphenopalatin neuralgia in my left side, i have cold pain sensation all day with high peaks od oain during the day, ive had this for almost three years and missed diagnosed with many other things. Ive been on amytriptiline 25mg per day for 3 months now and it lowered my pain just a little, 5 weeks ago they added 150mg pregabalin but after two weeks my pain was so high, so i stopped and im back to just amytriptiline.

Now they wanna try oxcarbazepine, has this work better for someone? After pregabalin making my pain so much worse, i am scared. The only thing that helps me a bit aside from amitriptyline is an electric pad over the left side of my face but i cant be on that all day :(

Was on 200mg bid and was getting very drowsy and foggy. With guidance from my pcp and neurosurgeon I’m going slowly down to 100mg bid and slowly introducing Lyrica hoping to get the TN therapy I need and reducing the drowsy/foggy effects. The titration period has me back to the flares I experienced when I started on this TN journey. Now eating soft foods very slowly and learning to feel the super flare before it hits… lots of meditative deep breathing seems to help.
Hoping for + results.
I feel good being able to share this with this awesome community.
Stay strong!!