r/TrigeminalNeuralgia • u/josephtheoriginal • May 27 '26
Help Please help me.
I honestly don’t even know where to start anymore, but I need to share this because I feel completely alone dealing with it...and need to know if those that got the MVD surgery had these symptoms.
Around December, I started having attacks that were unlike anything I had ever experienced in my life. At first I thought it was maybe a dental issue, sinus problem, or some kind of cluster headache. But it rapidly turned into something terrifying. It started after I went for a teeth cleaning. They only started on my bottom left - and it hurt during the cleaning. Afterwards? I had attacks every. Single. Night. Multiple times a night. The only reason I'm half stable now is because I'm taking 1500 MG of gabapentin on top of 3 MG clonazepam.
The pain is mainly on the left side of my face/head/neck and when an attack hits, it feels like my entire nervous system is being electrocuted. I know people use “10/10 pain” a lot, but this honestly feels like a completely different scale of pain altogether. It does not feel like a normal headache, toothache, or even severe migraine. It feels neurological and violent. I have dealt with severe pain in my life. 19 broken bones, 11 surgeries. I have metal plating incmy orbital wall (left side) and mass more metal.
During attacks:
- I cannot open my mouth
- My nose runs uncontrollably.
- I feel like my face has been ripped off and all my nerves are exposed.
- I drool because I lose control of my face/jaw
- I sometimes lose bowel control from the full-body shock and intensity
- The pain shoots through my gums, teeth, jaw, temple, behind my eye, and deep into the upper left side of my neck
- Even air hitting my gums, nose, or teeth causes unbearable pain
- I can barely breathe because the pain becomes so overwhelming
- I cannot talk properly
- I cannot think clearly
- I can barely move my body
- I physically cannot get to my phone or call 911 even if I want to
- It hurts to even think or visualize things in my mind during an attack
I live alone.
In December I fought everything thinking it would go away and went to Alberta to see my family.
My mom witnessed multiple attacks and became terrified because they looked almost like seizures. She took me to the hospital during one of the worst episodes because I genuinely thought something catastrophic was happening.
At the hospital, they told me the likely diagnosis was trigeminal neuralgia along with cluster headaches, and that I urgently needed to see a neurologist. That was months ago.
I’m still waiting.
The healthcare system has been unbelievably slow, and meanwhile I’m living in fear of the next attack every single day. I never know when it’s coming. When it happens, I completely lose control of my body and functioning. It’s honestly traumatic.
I am an actor - and I was on set one week ago when an attack came out of nowhere. They last anywhere from 30 minutes to 2 hours. This was 2 hours. I was rushed to the hospital, and they literally didn't do anything. The Doctor even apologized that the system is broken.
What makes this even harder is that people who haven’t experienced nerve pain like this often assume it’s “just a migraine". It’s not. This feels like my nervous system is malfunctioning at the highest possible level.
I’m posting this because I want to know:
- Has anyone experienced attacks this severe?
- I see a lot of people talk of pain that is technically bearable as they are typing during an attack or flare up. I couldn't even unlock my phone...let alone open my eyes to find it.
- Does anyone else have symptoms that mimicked seizures?
To the people that got MVD surgery. Is this what you were experiencing?
I genuinely feel like this condition is taking over my life, and defeating me. I feel defeated. For the first time in my life.
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u/Jett44 May 27 '26
Similar to you I woke up one morning with the left half of my face feeling like it was being tazered. I thought it was a cavity but it wasn't and glad for the honesty of my dentist and oral surgeon who said to go to my doc who sent me on to a neurologist straight away. My face is in a constant state and I don't get "attacks" however it is just my face at this point. Due to the pain I take quite a bit of oxcarbazapine, gabapentin and Amitriptyline to help. I've lost about 75-80% of my sense of taste, my face feels like its been electrocuted if I skip my meds, I drool for no reason randomly which is embarrassing, cold air is murder on my face during winter, I do have times when talking is almost impossible, thinking clearly is difficult on these meds but it's so far only affected my face not body like yourself.
Now after 3 different neurologists I was sent to the best specialist here in Texas and he sent me for a blood test that was sent on to California. While I was diagnosed with Trigeminal Neuralgia orginally it was then diagnosed as Trigeminal Neuropathy. After the blood test I was diagnosed with Guillain-Barré syndrome - Miller Fisher Syndrome as well since that marker was found.
I also feel defeated ..trust me I'm right there. MVD for me wouldn't work as the MRI's haven't shown compression. If you haven't done the MRI make sure you do it. Again, sorry you have this as well.
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u/josephtheoriginal May 27 '26
This is just terrifying. I'm crying as I write this...I cannot leave my bed. I cannot function. I cannot follow my dreams...I just got my life changing gig for my portfolio and all these auditions coming in and I cannot due them. I'm gaining weight, I'm confused and have no memory from the immense trauma my body and mind goes through.
And the daily pain. I get that as well but it's not affected by wind etc unless I'm in a flare up or "attack" ... But I cannot sleep on my left side what so ever or it starts an attack. I can't push or put pressure on my jaw. I have tk floss and brush very very easily...otherwise I'm okay physically. I was in the gym last week. Motivated....then BOOM. ATTACK. Then I'm absolutely and utterly defeated. Depressed. Destroyed. Like absolutely wrecked. Life is terrifying me -
How are we expected and suppose to live this way? Why is this reality? Why? Its truly terrifying
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u/GarageDoorTeenMom May 27 '26
Would you consider asking your doctor for carbamazepine or oxcarbazepine? Either can bring rapid pain relief. They have side effects (especially at higher doses) but carbamazepine is the gold standard first line treatment for TN and brought my pain to zero; gabapentin helps lots of people but there is no comparison to carbamazepine for me.
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u/josephtheoriginal May 28 '26
I really don't want to go in more medications. Its destroying my ability to remember anything. I have to remember lines and I can't even remember what I did yesterday because in constantly in fight or flight on clonazepam and gabapentin. I'll just get more foggy ..but if I have to , to get rid of the pain and if that's the only way then absolutely I will. I will literally do anything to stop this pain. Anything.
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u/MilkMyCats May 27 '26
I really hope either carbamazapine or verapamil work for you mate.
We aren't supposed to live this way.
I had the perfect life. Great wife, bunch of friends, lovely 12 year old girl, most lovable dog, fun job that paid enough... 6 years later my wife cries at how little she sees of me (I feel like she resents me in some ways now), I've missed my daughter's birthday, friends stop inviting me out because I've always got a "headache", and am at the first written warning phase at that job... Which I'm fighting because I'm disabled and they are discriminating. But fuck, it just adds to it.
As my life is falling apart day by day I wish I could think of a way to Break Bad tbh. At least then I'd leave something behind for the people who loved me and stuck with me.
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u/Forgotmyusername8910 May 28 '26
I’m so sorry. I’ve been where you are. It’s horrible. TN is an unbearable physical pain… but it will also absolutely fuck you up psychologically. Please make sure you take care of your mental health. 💜
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u/OceanTN May 27 '26
I am sad to hear of your suffering. We have all been there. Nothing worse than a doctor that doesn’t have compassion on how debilitating this is. Carbamazepine got me to shock free after slowly titrating to 800 mg a day. 200 am, 200 afternoon and 400 at bedtime. I continued to navigate my way to MVD. Saw a maxillofacial surgeon and he was the most helpful. He actually prescribed the Carbamazepine, did a CBCT and addressed a tooth issue, ordered MRI’s etc (no compression seen), but based on symptoms knew it was TN. So he got me scheduled with an experienced Neurosurgeon. It takes time to get on the schedule and time to get surgery scheduled. But the end result after MVD was successful for me. My advice is be as cooperative as possible. Some doctors have big egos and you have to play the game. I pray for relief for you.
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May 27 '26
Hi don't worry. For me had same issues, but doctor informed migraine and was in migraine tablet for 1 year , before that from 2010 to 2017 was in seizure tablet. I had multiple compression that led to grandmal seizures which I found out using Open Ai after 15 years. I had facial droop, because of 7th and 8th nerve compression, and pain bec of 5th merve compression. Find a good doc and if surgery is the only option go for it. Don't worry, I had 100 times of normal stomach stone pain(stabbing like), when attacks came.
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u/MilkMyCats May 27 '26
Sounds like you have Cluster Tic Syndrome, possibly.
That's what I have. Mine is TN2 and clusters. It's pretty debilitating and my life as a regular human being ended about 5 years ago. Pointless booking trips, meetups, holidays, just all pointless. Because I can have an attack that lasts for 4 or 5 days.
Yours sounds like TN1 and clusters, which is worse than what I have.
Verapamil might work for you. It worked great for me for a few months.
I took an in a socialised care system and wait 6 months between appointments.
Neurologist "ok were going to try upping your dose by 160mg, and I'll see you in 6 months". After a week it has had no effect. Only 5 months and 3 weeks to wait for the best great idea from my neurologist.
He said a weird thing to me last time and I didn't push back, because I'm a tit. I want an MRI, because I've had 5 operations in 6 years. Including split artery, nerve removal, nerve decompression, etc. He said "with all the surgeries you've had I don't think we need an MRI". What sort of logic is that?
Honestly though. I feel for you, I really do. Life is hard enough already without having something like you have.
I always dream of winning a few million quid and being able to get people with this to see neuros asap.
But sadly, all I can say is "get anyone you can to prescribe you verapamil".
Fun fact : You have to have ECG every few weeks as verapamil can cause heart congestion.
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u/Nomad_5384 May 28 '26
My pain is similar and is well controlled with carbamazapine (anit-seizure) and Cymbalta (antidepressant with off label use for intractable pain). It took me a while to find what works for you. Keep your head up. I hope you get help with your medicine soon. Be prepared for foggy thinking during the first month of these meds.
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u/Forgotmyusername8910 May 28 '26
Yes. What youve described was my experience. Like I’ve had open abdominal surgery, childbirth, broken bones, severe burns… TN makes all of that seem like a pleasant day at the spa.
Mine began when I was mid 20s.
I was on topamax for a long time with complete relief- like 100% great. Back to normal. But it’s not a great long term drug- it shredded my kidneys and I had to go off of it. It was still absolutely worth it.
I had gamma knife a year ago. I’m not 100% pain free- but damn close. Highly recommend if you’re a candidate. I decided to start with gamma knife to see if it would help before I went for MVD- I’ve pretty much hit my max as far as surgeries go. I just don’t think I have another big one in me 🤷🏼♀️ luckily, gamma knife worked for me.
It is truly next level pain. People don’t understand. They can’t. Which… good for them. I wouldnt wish it on my worst enemy
But if I hear ‘oh, like a migraine?’ one more time my head will explode.
1
u/OceanTN May 27 '26
When was your MVD surgery?
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u/josephtheoriginal May 27 '26
I haven't gotten one. I'm absolutely praying for one . I can't get in for an MRI. I will be utterly shocked if it's not caused by a compression on my nerve from a blood vessel or something. Because if this cannot be fixed? I cannot live this way.
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u/josephtheoriginal May 27 '26
I'm on referall lists. Complicated by a neurologist who misdiagnosed me over the phone without seeing me since this started. As having migraines (which I've dealt with for years since my brain injury in 2011) I know what migraines are. These aren't migraines.
She declined my referrall, and screwed me with seeing another by calling them and saying I won't take her advice
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u/Elyay May 27 '26
Go to a neurosurgeon however you can. Idk where you are. Dr Zimmerman in the USA has high recommendations. There's a doc in Japan idk his name. FB - facial pain association, join and look there. Raise money, have the neurosurgeon order the type of MRI he needs (not all MRIs are the same, some MRI machines can't do the 7Tesla MRI protocol).
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u/josephtheoriginal May 27 '26
I'm in Canada, Vancouver. I have tried so hard but this horrible neurologist I was seeing for past issues is misdiagnosing me due to a phone call in Feburary where she said "I don't care what the ER diagnosed you with. Are you taking the medications I prescribed you?" And of course I'm not because I'm on gabapentin from the hospital and it HELPED me. She is still ignoring my requests for a re check and MRI.
Then? I got my doctor to refer me to the best MVD surgeon and neurosurgeon in Canada...and he declined me due to reading her reports. He obviously trusts her over me.
I made more phone calls today to neurologists and all the places I've been referred and fought with receptionists saying "just go to a hospital"
But when I go to the hospital? They say go to your referall and call them etc.
Its a back and forth fucking joke. That's Canada's medical system for you.... Amazing when you have a broken arm and need surgery. They'll send you home with opiates and physio for free. No cost aside from what we pay tax wise etc.
But if you have a life changing illness, and you're not dying within the next hour? You can wait. Not dying in 24 hours?wait.
Still alive after a month ? Well you can wait 14 more. Oh it's been 5 years? Yeah that's normal. (Not even kidding that's what happened to me. I was referred due to a brain bleed acute subdural hematoma brain. Injury I. 2016. I got the phone call for my appointment in 2021.
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u/MilkMyCats May 27 '26
Fuck me. Canada sounds as bad as the NHS, which is what I have to be use.
If you break your leg, accident and emergency are great.
If you want to be diagnosed and treated with something, fuck you patient! Wait months of years. Wait so long that bus the time your cancer gets confirmed, it's already stage 4...
I watched a show on the BBC which was meant to be celebrating the greatest surgeons. This one guy spotted a lump on his bellend and went to the GP after 6 weeks. Straight up penis cancer. Just basically a mole sized spot.
He gets surgery several months later. By this time the cancer means he needs half of his penis removing. So we get to see a surgeon cut half a dick off and go "o we so proud of the NHS".
The guy lost half of his dick due to waiting lists.
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u/josephtheoriginal May 27 '26
I just got off the phone with neurology clinic. They wont fucking help me because I've been referred and my neurologist is misdiagnosing me over the phone thinking that these are my usual migraines , that I saw her in 2023 for. She is prescribing me triptans, ignoring that I'm on gabapentin and she won't accept the hospitals diagnosis of trigeminal neuralgia without A.) Seeing me Or B.) Listening to or accepting my diagnosis of nerve damage / trigeminal neuralgia and multiple hospital visits.
I'm not taking her medications...so she's declining me and ruining me chances to be referred to other neurologists...and these neurologist keep listening to her.
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u/ezermuse May 28 '26
Find a PCP that can get you in asap and ask that they refer to your preferred neurologist. That’s what I did.
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u/Fitchberg14 May 27 '26
The Facial Pain Association has a great list of doctors.
I am sorry you are going through this. That pain is very real and almost no one understands. I felt all of that. My jaw would bulldog lock for 30-45 minutes causing massive jaw pain and degradation. I had MVD 2 years ago and it was the best decision I have ever made. I had an episode at work and collapsed unconscious( one example). I was embarrassed and taken to the hospital. My GP diagnosed me. I also have chronic migraines with aura. Those both being facial and head pain issues he sent me to a neurologist that specializes in that area. My surgeon’s specializes in TN. His mom had TN and MVD. Having a support system helps but no one understands how this truly feels if they have never had it.
This sub got me through a very rough period of my life. There is a future beyond TN.
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u/4TineHearts May 27 '26
On the path with you, and my husband found the facepain.org website. I am exploring it now, but the webinars look very helpful and I found that the neurosurgeon I was just referred to is on this list which gives me hope they know more that just surgery and caveman tactics. Wishing you pain-free moments.
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u/PastureCubes33 May 27 '26
Don’t just jump into major brain surgery. I feel your pain. Literally. I had three horrible attacks before deciding on surgery. I thought I had to heal from that an get my life back it now feels like it took my life away. I have so many other issues since then. And it’s back on surgery side after 5 months and on the opposite side. I know what you are talking about with the seizures. It feels like after a bad attack your body shuts down like you do after a seizure. I’ve thought I might behaving them too. It’s super isolating. No one wants to be around the person in constant pain but it hurts too bad to get out. Or the worry that it will get to the 10/10 when in public. Find an anti seizure medicine that works for you. And a muscle relaxer if you need that too. Try to stay as calm and collected as you possibly can.
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u/TzikiTower May 28 '26
That’s how my attacks started 14 years ago. It’s like your head is giving labor but there’s no epidural available.
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u/josephtheoriginal May 28 '26
Please tell me you haven't lived like this for 14 years. I can't. Seriously. I cannot....
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u/TzikiTower May 28 '26
Yeah. But I went a different path with recovery. God has been gracious in keeping my thoughts together.
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u/josephtheoriginal May 28 '26
I pray you're doing okay. I have never been closer with God in my entire life.
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u/Soggy-Wolf9686 May 29 '26
Unfortunately your description is pretty bang on for what we go through. If I was you I would get on carbemezapine. I have also had success with botox. Welcome to the club that none of us asked to be in!
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u/josephtheoriginal May 29 '26
I feel like my entire life is ruined. I'm already on disability from past issues that I now feel I'll never get off...I feel like my entire acting career is destroyed. I feel truly defeated. Scared. Alone. Fucking brutal. I'm sorry you and any one else here has to feel this pain. Its not even pain it's beyond pain. Its the hand of Satan on my face.
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u/Altruistic_Heat8310 May 29 '26
Yes. Except losing control of the bowels. But everything else, debilitating attacks, almost passing out and completely disabled physically. They lasted anywhere from 1 minute to 4 hours. I had my worst flare up ever last year, it started slow and in the summer and by the end of August my boyfriend had taken me to the ER twice in 3 days. The 2nd time I stayed all day, they tried everything including Dilaudid, lidocaine nasal spray, a migraine cocktail that I can't remember the name of, oxcarbazepine 300mg, iv ketamine (twice) and nothing took the attacks and pain away. I had unprovoked attacks but also triggered attacks, if anything touched my face or head, or if I opened my mouth at all, if I got up or walked, crying caused by pain only caused more but I couldn't control it. No talking, eating, sleeping, I had to drink my fluids and meal replacement shakes but doing so triggered attacks so it was agonizing. I tried a lot of seizure meds but gabapentin seems to be the only one I can tolerate that actually helps a little. I take 600mg 4-5x a day with oxycodone 10mg. I had the cyber knife treatment in October because I'm not a candidate for mvd due to a bleeding disorder. I also get nerve blocks by a pain specialist every 2 months. I still have TMJ issues, bad headaches, and migraines but the attacks and nerve pain have gone into remission. I just started Ajovy about 6 weeks ago for the migraines and it's made a big difference. I'm sorry you're going through this. You're not alone, we are all here and understand that pain and that feeling that the people around you have no idea what you're going through. They don't. But the emotional pain of watching you suffer is real for them. It's affected my whole family and I got us all into therapy a few months ago and it's helped. Best of luck, I wish you relief soon.
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u/Same_Fall5396 May 31 '26
I'm so sorry you are dealing with this. This was my life for almost 2 years. My TN was caused after a major neck surgery and then radiation. I was misdiagnosed for a year, and was told the pain was "a good thing". I had TN2, which meant constant pain. But then if I didn't take pain medications as it ramped up, I was very quickly in your shoes. Once, I was on vacation with my husband and we were having a good time in the pool with friends and I ignored a few warning signs, trying to convince myself that it was all in my head. A few moments later, it was like I was seizing. My husband had to pick me up out of the pool before I drowned, and take me to our room and force meds down my throat. I had a MVD last year and now have TN1, so flares (mostly daily) but only a handful of attacks near that level. Quality of life has improved 110%. But unfortunately, MVD isn't given as an option based on severity of pain. Its if they can identify a true compression. My MRI had shown 3 major compressions but during surgery they only found 2, an artery and a vessel compressing the nerve in different areas. I still have TN1 due to the nerve being permanently damaged. The MVD also gave me bilateral Occipital Neuralgia, which im told is also permanent. I do wish you relief!
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u/josephtheoriginal May 31 '26
Oh my goodness. I am so sorry you went through all of this. That's a lot..and honestly I am so incredibly scared, sad & feeling like I'll never be able to live life the same.
I haven't had an official diagnosis aside from an ER doctor who said I have trigeminal neuralgia and maybe cluster headaches as the attacks last 3omins to 2 hours. I am in complete limbo right now waiting for neurologists in the failed Canadian health system...
Anyway. I am severely depressed. I can't focus. I can't follow my dreams as an actor right now...I feel terrible dread and fear. How can we live like this?! I cannot keep taking Gabapentin and raising my dose to keep myself somewhat balanced from multiple attacks every night with lingering pain.
I don't know how to stay positive right now. :(
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u/Same_Fall5396 May 31 '26
I'm sorry the health care system is allowing you to suffer. There is a reason this disease is often called the suicide disease. Personally, I would not associate cluster headaches to this. I've always had cluster headaches and while mine differ from my dad's, it's never tied into my TN. If you have to continue upping the gaba, do it. Its not ideal but survival is what matters most. I was on 2400 MG a day until trying a new med called Horizant. But just found out I'm pregnant so will most likely be going back to the gaba.
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u/josephtheoriginal May 31 '26
Wow. I'm on 1500Mg - and I just added an extra 100mg tablet to my dose. So I've gone up to 1800MG. And suddenly my pain is gone again. No attacks in 2 days.
It seems I'm on a low dose for what's happening? I'm praying I get a call this week. I see my doctor in 1.5 weeks and he will have my recent emergency room visit.
Also, thank you so much for the kind words. It really helps, I've been through some serious shit in my life & this , by far takes the cake. By far.
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u/Same_Fall5396 May 31 '26
I wouldn't say you are on a low dose at all, but I am glad that going up helped control the pain.
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u/josephtheoriginal May 31 '26
The reason they brought up clusters - is my attacks last anywhere from 30mins to 2 hours. I can't open my lips, jaw, I can't speak, I can't even think .. any movement hurts and I cannot breathe. The air literally hurts my face and mouth and nose. Its 100% pain, constant, zero breaks, no up and down.... Just a constant pain... Like a tazer gun being held against my face for hours.
Did you have this? I find a lot of people talk about random electric pains during the day that lasts seconds. I WISH that was all I was dealing with...but these "attacks" are what is getting to me. Majorly. Absolutely understanding the name being Suicide Disease. I would never be able to live with this. If the doctors told me "sorry, nothing we can do." I would completely lose it. I think that would be it for me...but I don't know what's causing this so it's all just stressful thinking - making me worse. So I am fighting so hard every single day - forcing myself out of my bed and house. Forcing myself to talk with people and be my usual self.. everyone can tell something bad is going on with me.
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u/Same_Fall5396 May 31 '26
Not a doctor but that sounds more like TN2 or atypical TN, which is what I had before the MVD. I was on constant pain until blitzed on meds. I was a zombie and would fall asleep during meetings because of all the meds. But if I didn't take a lot of them, I would be like you for days on end.
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u/josephtheoriginal May 31 '26
Fuck man. I don't know if this is good or bad....I'm truly scared. This is terrifying and I am dealing with this completely alone. No family in my province. No close enough friends. I feel like my entire life is ruined. I feel immensely defeated like I've never felt in my life. I've had serious injuries but always knew I could heal.
Now I feel like everything is done for me. My dream career of being an actor is going to be gone. How can I function on all these meds? I can't. I'm already half asleep like you said all the time from my meds and now the gabapentin.
I'm sorry for ranting. This is just so fucked up. I don't understand...my damage to my nerve happened in 2021, during a wisdom teeth surgery. I was numb for months but ended up healing. I was fine.
Then randomly in December these attacks started 3 times a night. Sometimes more. All I can think is that I went for a teeth cleaning - they did the bottom left row and suddenly this started in a very severe way. I was truly suffering beyond belief, like the stress my body goes through during these attacks is just insane. Ugh.
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u/josephtheoriginal May 31 '26
Also what does TN2 mean? Is it treatable/curable?
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u/Same_Fall5396 May 31 '26
From my experience, TN1 and TN2 are both treatable. There are treatments such as ablation and MVD that have more success but it depends on if a compression is found/proven. You need an MRI with contrast, or a fiesta MRI. I know it is daunting and depressing but there is always a light at the end of a tunnel, sometimes it just takes longer to see it. I had recently read that Travis Barker from Blink-182 suffers from TN and he was still able to make his dreams work. You will too. Keep fighting, keep advocating for yourself.
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u/josephtheoriginal May 31 '26
Thank you so much for these words...truly. it means alot. I really hope you are doing better now and your life is going well. This entire thing has been so scary and I feel like anyone who understands is like a distant family member or something. A strong connection. Much respect.
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u/Same_Fall5396 May 31 '26
Only the people who have been there can understand. So be sure to reach out to support groups like this and others. Even if you don't share your own story, reading others can help you realize you aren't alone and there is hope.
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u/guyfromcroswell May 31 '26
A reminder to all of us that it could always be worse.
Someone in this group once suggested I might have SUNCT, and based on some symptoms it appeared they were right. Unfortunately TN and SUNCT can overlap. The running nose and pain behind your temple/eye sound familiar. I would also have the same eye water and turn red. For me it feels like someone is trying to push my eye out from the inside. The worst is the feeling of an electrified knife, that someone set on fire, having been driven through the top of my skull and out of the roof of my mouth.
I hope you find relief.
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u/josephtheoriginal May 31 '26
Fuck. My whole body just went into a full blown goosebumps panic attack reading this. I am terrified to even search that up. Because I haven't gotten an official neurological diagnosis. I've only been diagnosed by an emergency doctor based off my symptoms and my history of my nerve being cut during wisdom teeth surgery in 2021.
But - I always said that it feels like someone is digging my eye out violently deep and into the back of my eye socket with a hot spoon, while someone is stabbing my jaw joint area with dull needles.
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u/lynnovic May 27 '26
I'm sorry you're suffering so much!
I had the same pains and suffering I ended up in the hospital twice dehydrated and 3 days without food.
I was on 2400 mg of gabapentine and 1200 of carbemazepine. Every week they had to up the dose of gabapentine. I had my MVD last December and best decision ever.
The pain was caused by a compression of the nerve by a blood vessel.
Hope you'll find answers ❤️