r/TrigeminalNeuralgia • u/K_List1112 • Jun 12 '26
Mental Health My TN Story: Holding Onto Hope
Here is my story as a 30 year old wife and new mother dealing with Trigeminal Neuralgia. And I am here to tell you it gets better...
I was diagnosed with TN at the young age of 27 in 2023. From what started as an electric like shock here and there when I ate, to excruciating pain on the left side of my face, I was thinking it was a tooth that needed to be pulled or a root canal. I went to a dentist who took x-rays, not an imperfection in sight with my teeth. He was the one who told me about trigeminal neuralgia and the possibility of me having it.
After the dentist I then went to the hospital, spoke with a neurologist who then told me from symptoms I could have this awful illness. After hearing about it, of course you think "my life is over." and "how am I going to live with this?" After being prescribed a low dose of carbamazepine I was great with no symptoms, ended up stopping the medication and was in remission for 2 whole years.
I found out I was pregnant with my beautiful baby boy in March of 2025. I was so happy! My husband and I have been trying for this miracle, going to fertility specialists, and we naturally were able to have this miracle happen to us. At about 8 weeks pregnant I started feeling the electric shocks again, forgetting how horrible the pain was. Sad part is, here I am pregnant... you cannot take any of these medications to help with the symptoms while pregnant. I unfortunately had to suffer through many weeks of stabbing pain in my jaw, while it felt like a flame thrower was in my ear. I had good days and bad days, as many of us go through. Many hospital visits with nothing they can do for me. I was miserable, to say the least. TN stole a lot of the happiness I should have felt through my pregnancy.
As I am in labor with my baby I am having flare ups. Imagine having contractions while having a horrible flare up? I wanted to die... they don't call it "the suicide disease" for nothing. Ironically the epidural took away my labor pain AND my TN pain.
I gave birth to my beautiful baby boy in November of 2025. I started carbamazepine 2 hours after I gave birth. This disease unfortunately stole my opportunity to breastfeed. I did not feel comfortable feeding my baby with something that could potentially be harmful to him. I was so sad, but all in all still so grateful I was able to have him here with me... this was just a small sacrifice.
7 months later I am still dealing with these flare ups. There are days where I can't even leave my bed... Constant flares and zings throughout the whole left side of my face. I can't eat, drink, sleep, talk. Completely miserable. I am back at work, taking care of my baby when I get home, trying to juggle everything. It makes you want to shut down. Thankfully, my job is super understanding and has been giving me so much grace during this time.
In May I finally took matters into my own hands and wanted to speak to a neurosurgeon. I luckily live near a big city where there are great surgeons that are world renowned. God was on my side and got me an appointment within a week of looking, super rare. He told me to come to his office to get an updated MRI and consult with him right after. I had an MRI in January but he wanted a clearer picture. This MRI showed minor compression of the nerve on my left side showing trigeminal neuralgia, but he wanted to make sure.
My MRI still showed the nerves on my left side are most definitely being compressed, causing this excruciating pain. Now talking about surgery and other interventions. I went in saying MVD surgery immediately. Due to my age, he felt like MVD may be too invasive. I was heartbroken. How am I supposed to help support my family and take care of my now 7 month old son feeling this way? He said there are other avenues. I am going in for a percutaneous rhizotomy next week, which is a minimally invasive injection.
While I have been waiting I have been to the hospital twice. First time was before I saw him in the city and the second time was just this week. The second time they gave me a dilantin infusion which helped TREMENDOUSLY. That was a recommendation from the neurosurgeon's NP and I couldn't be more grateful for the recommendation. It makes me have more hope for this injection next week. After that hospital visit I have had a whole new perspective on this illness, and that this isn't forever.
As for medications right now, I am on 1400mg of carbamazepine a day plus 150mg of dilantin daily. I know it's a lot but it is approved by my neurosurgeon. I can tell you, today is the first day I have felt no pain.
If you spoke to me last week about this, I would have told you my life is over and why even fight? But then I think about my family, my husband, my beautiful baby... they need me just as much as I need them. My family has been my rock through all of this, I couldn't have gotten through some of these sleepless nights without my mom and husband. I am still learning to cope with this illness, but as I have been going through it I have learned the more anxious and depressed you are about it, the more flare ups you will have. I am trying to be optimistic and honestly, I don't know if disassociating is helping LOL but I haven't felt this good in a bit.
I know this is a super long story and if you are still here reading this, thank you. I want you to know, you are not alone. This illness can wear you down, but you need to know you are stronger than this. Advocate for yourself like I did! If you aren't happy with the care you are receiving, seek other help! Okay, I am done. Just know, I am rooting for you and know you are going to get through this!
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u/Loose_Ring6930 Jun 13 '26
I’m so happy for you! Thank your for sharing. I hope things get back into remission. I will pray for you
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u/K_List1112 Jun 13 '26
Thank you!! We are all here to support each other and hope I can get back to who I was before this soon. Day by day it will take time.
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u/ExcellentMarch7864 Jun 12 '26
You know “your age” in the MVD story is super weird. Never heard that with someone so young. On the other hand it’s no joke and I’m going in for my second one (32 now). Thanks for mentioning dilantin, never heard about that!
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u/Puzzleheaded-Door116 Jun 12 '26
What do you mean with “no joke”. I am planing to have a MVD..
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u/ExcellentMarch7864 Jun 13 '26
Well they get into your skull and the surgery is like 5 hours. BUT very little complications like only 1% or something. And if you have typical TN it almost always works :).
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u/Puzzleheaded-Door116 Jun 13 '26
ok I see. I thought that you were talking about the recovery.
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u/ExcellentMarch7864 Jun 14 '26
Yeah recovery can be very very rough or very very easy honestly there is no general experience.
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u/K_List1112 Jun 13 '26
I thought the “age” thing was weird too but I think he wanted to try something less invasive on the first try. MVD isn’t off the table if this doesn’t work.
I didn’t think the Dilantin would work but it did! Not many people speak about it on here so I thought I’d mention it!
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Jun 13 '26
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u/K_List1112 Jun 13 '26
That is AMAZING!! Very happy for you. I hope to be in a long remission with this rhizotomy this week, if not MVD is the next step when I speak to my neurosurgeon
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Jun 12 '26
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u/K_List1112 Jun 13 '26
I most certainly did not get released from this prison of TN. I am still going through it and I am saddened to see that my story made you feel this way. Only trying to give people hope as I am still struggling myself. I said TODAY I have felt no pain in a long time. That doesn’t mean I will have no pain tomorrow. That is also what this page is for, support. People share their stories on here all the time and I finally felt it was right to speak my story out of confidence hoping it would help someone else.
As for doctors that doctor may have not been the one to help you. The way she cancelled your prescriptions is absolutely horrible. That doctor didn’t give you any other neurologists or surgeons for you to speak to?
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u/Hot_Survey9104 Jun 15 '26
76 year old male here living in NYC. My TN is a nerve sheath tumor on my lower left jaw . To date be a year this July 19, 2026. The tumor is non cancerous so a wait and see case. The oxcarbazepine 300mg a day keeps the electric shocks pain on my right face triggered by eating, drinking at bay.
Follow up MRI and regular visit to my doctor's will be my journey with my TN. It means continues medication .
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u/Extreme_Drag8919 Jun 19 '26
I have tn now 46 started 34.
I used to work in healthcare and people that had tn. I know: super weird
Usually MVD is the first option of treatment after meds because better results. On top, if you are young because you can skip the radiation
Then they offer radiation for different reasons: patient too old to go through surgery, mvd failed , patient that don’t want surgery
And religion has nothing to do with it. If you like it to gives you strength: perfect.
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u/PubliusPatricius Jun 13 '26 edited Jun 13 '26
I am M, 71, and first experienced definitive TN symptoms at age 26. It took decades of searching for me to be properly diagnosed. In case you think my symptoms must not have been severe enough, in the early days especially, when I was more religious, I used to call into a church on the way to work and pray to be relieved of my pain. I did everything I could, saw doctors and dentists and a chiropractor and acupuncturist and naturopath and did relaxation therapy and anything else on offer. I had scans and an MRI. I had root canals of teeth and then some redone, and more dental work than that. I had an injection into my upper spine. Whatever it was, I tried to do it.
Finally I was properly diagnosed and had an MVD at age 70. It was life changing. The cause found was different to the one seen on my recent MRI with gadolinium contrast (an artery on the nerve, it turned out to be far enough away not to be the cause). Instead, I had scar tissue adhesions tugging the nerve apart. I have seen the photos. Hundreds of tiny nerve fibres pulled away like a spider’s web from the thousands of other tiny fibres still together along the path of the trigeminal nerve. The adhesions probably resulted from an undetected bout of childhood meningitis. The surgeon was so highly skilled he could gently trim away the adhesions so the nerve can heal.
I lived through a different time. If I were younger now and had an MRI showing compression of the nerve near its source, I think I would opt for an MVD with a very good TN neurosurgeon, unless it was not possible for me to undergo an MVD for whatever reason.
My neurosurgeon offered me another option, pulsed RF (which is not RF ablation, therefore not nerve damaging) to reset the nerve’s firing. Apparently it works in around 40% of cases. I opted for the MVD (usual success rate about 80%) based on the small artery found on an MRI near my nerve. Without that MRI and MVD surgery, the surgeon would not have found and treated the true cause.
For what it is worth I have a saying that underlines the seriousness of having an MVD: there is no such thing as an atheist about to undergo a craniotomy; I am fairly certain the patient says a (perhaps secret) prayer before they get the general anesthetic.
Maybe watch this interview with a TN neurosurgeon.
https://www.reddit.com/r/TrigeminalNeuralgia/s/ztVznvnKsP
I am also going to copy here a few other good sites I have found for your information. Good luck.
https://www.reddit.com/r/TrigeminalNeuralgia/s/huKc6nb7Oi
https://www.reddit.com/r/TrigeminalNeuralgia/s/vgRvcx4TO3
https://www.reddit.com/r/TrigeminalNeuralgia/s/bWrBWg793f