u/esotericpomegranate

Once in a while I have moments where I re-realize and remember what’s really going on with me and it hits me like a truck. I was organizing all of my pills for the week and was just staring at my handful of carbamazepine ready to distribute into different pill boxes and looked at my pill organizer, and thought, “I can’t believe this is my life now”. I never expected to be the type of person who needed to take so many meds just to be able to function. Now I’m thinking about it and I just can never fully digest it. I cried and cried about how I will never truly have answers or an escape. Most conditions can be cured or reversed through lifestyle changes or temporary medication. But me? I’m just stuck, and there’s no end in sight.

Let’s just say I’m looking forward to therapy in a couple of days.

:(

Could PRF treatment on my scalp have triggered a shock I experienced later?

I get PRF done on my scalp to stimulate hair regrowth since I have significant hair thinning due to PCOS. I had it done today around 12 PM, and it of course was very painful. My injector also uses a small vibrating tool next to each injection as a way to “distract” you from the pain of the injections, and I felt it vibrating the whole side of my face and slightly trigger a TN toothache. I was too shy to tell her to stop using it and just prayed she would hurry up and move on to the other side of my head.

It’s now close to 4 PM and I got a small shock while eating, and now my cheek, jaw, and mouth area ache. I raised my carbamazepine dose by 200 mg ~ 2 weeks ago (800 mg to 1000 mg) and it very quickly eased the severe pain I was having at the time. I haven’t had a shock since then, til now. I’m trying very hard to reassure myself that the dose is not failing or losing its effectiveness and that my nerve is just triggered because of the PRF treatment and if I’m careful with my face the rest of the day I’ll feel better soon. Is this genuinely a possible explanation for the trigger + shock or is it cope 😭 I’m really trying not to panic. I think I’m also due for my period soon, idk. I’m irregular.

Please reassure me if my suspicions could in fact be correct. I don’t believe my ophthalmic branch is necessarily affected but over time as my nerve has gotten more sensitive movements far away from my trigger areas seem to affect those areas. TN is a B.

I have been on the same dose of carbamazepine since March (800 mg). I’ve had small flares here and there, like mild-moderate aching and some shocks that were mostly few and far between. I never went up in dose because I knew I would need to eventually switch to lamotrigine to prepare for TTC. I’m currently on my second week of taking lamotrigine 25 mg once a day. At the same time, my symptoms have been progressively getting worse the last month ish, with getting shocks almost daily the last weeks. Today, I sneezed twice and blew my nose after. I got two huge shocks in a row. Later, I brushed teeth and got shocked spitting out my toothpaste. The rest of the day just snowballed. Shocks almost nonstop. I had a panic attack and cried nonstop because I am of course traumatized by past major flares. I decided to message my NP (she works under my neurologist and regularly discusses cases with him). I told her I want to raise my carbamazepine dose and I understand that the decision will delay the medication switch and a potential pregnancy. I’m also a teacher and school starts in 2 weeks and there’s no way I can start the school year off like this, I’d rather take time off later in the fall or winter if needed during the official med transition. And, less urgent but still important to me, I sing in a choir and have my first solo coming up this Saturday and I really do not want to miss out on that or God forbid experience a flare while onstage.

I spent a lot of the day crying and panicking, which I’m sure made the pain worse, lol. I barely ate and I’m scared to eat. My husband got me a bunch of soft foods to get by but I’m still scared because no matter what the mouth will move.

:’)

hello!

my husband and i plan on TTC soon. i have a condition called trigeminal neuralgia which causes debilitating nerve pain in the face. i’m currently taking gabapentin and carbamazepine to treat it. i’ve always known carbamazepine carries some risks when it comes to fetal development, so i consulted with an MFM specialist today. she told me she prefers i taper off of the carbamazepine and begin taking a medication taking a medication called lamictal (or lamotrigine), which is much safer during pregnancy. i basically sobbed and had a panic attack after hanging up with her because i am terrified of experiencing the debilitating pain i went through before i started treatment, and i know medication transition can be very difficult. i also know that if i stay on carbamazepine against medical advice and something happens to my potential baby i will never forgive myself. im feeling lots of worry for the future, including the possibility that i could be pregnant and in severe pain at the same time because maybe the medication wont work as well and i won’t be able to eat enough while pregnant (chewing causes pain) or god forbid, miscarry from the stress of the pain. it’s really bad.

i’m wondering if any of you have gone through a similar experience and how you coped or proceeded. any advice or kind words would be greatly appreciated.

i spoke to an MFM specialist today (high risk OB) because we are planning to try to conceive soon. she told me she prefers i stop taking carbamazepine and begin lamictal instead (slow taper under my neurologist’s care, of course). this was my fear. carbamazepine has worked pretty well for me, except i recently have had more frequent small flares. i haven’t requested to up my dose because of my plan to conceive soon. after i got off the phone with her i cried a lot and basically had a panic attack. my hands were shaking and my body felt weak. i was just repeatedly telling my husband “i can’t go back”, meaning i cannot go back to the way it was before i was unmedicated, the legitimately traumatic attacks i experienced. i’m of course going to listen to the doctor because if i decide to go against her advice and stay on carbamazepine and my potential baby is born with defects i will never forgive myself. i am also terrified of the transition process being very difficult or painful and it affecting my job. i’m afraid of experiencing pain during a pregnancy and being unable to eat or god forbid miscarrying from the stress. i am super duper scared.

i know there are options like botox and nerve blocks but you never know if they will work or potentially make things worse.

let me know if you have had a similar experience and how it went!

Has anyone been able to maintain a relationship with the person/people who traumatized you in the past while reprocessing the trauma they caused you during EMDR? This is specifically in the case of past trauma, but no abuse has occurred in a very long time and the relationship has improved over the years. I’m reprocessing abuse from my dad that I would receive as a form of punishment when I was a kid/teenager, specifically an event where the abuse was very severe and the aftermath was visible. I thought our relationship was good now, but since starting EMDR, I’m struggling with feelings of anger, disgust, and immense sadness and dread having to do with the past trauma, including anger and disgust with my mom for not stopping him. It’s not possible for me to temporarily cut them out of my life while I reprocess the trauma and since the abuse is not active, and they believe we have a good relationship, I can’t just randomly disappear for a little bit. I’m also not willing to admit to them that I have to temporarily disappear to reprocess the trauma he caused me, lol. I also want to rebuild a healthy relationship with him after I am finished with the reprocessing. I’m not sure what to do, it’s hard to constantly reject their invites to visit or give my dad attitude over the phone because I’m mad at him for a past thing and he has no idea.

I’m creating a birthday gift for a close friend where I want to include preexisting songs, and audio of me explaining/commenting + partially translating before each song begins playing. I chose cassette as my medium for doing so. I’m completely new to this- what is the best way for me to burn/transfer music onto a cassette with audio of my voice before each song? I have a MacBook. I’m willing to buy reasonably priced equipment if needed (like a cassette recorder, etc).

29F. Anyone else feel very emotionally distressed during a flare, even when it’s mild and less than 5/10 pain?

I’m experiencing some sharp pain in my teeth and cheek area and burning in my ear and jaw. It’s actually mild, like 3-4/10 pain, but I’m still feeling such profound doom, distress, and fear. When the pain is 0 or 1/10, I feel like the world is at my fingertips and that this disorder can’t stop me from following my personal/career goals, and that I’m so lucky to have a treatment that works for me.

Then I experience a flare (again, even mild!!!), and suddenly I’m back in January before I started taking my meds and was practically disabled. I want to sob. This disease has genuinely traumatized me. It’s not just physical triggers that affect me, but mental ones. When I feel mild pain, I also feel intense fear of the burning and stabbing attacks and constant shocks and twitches I would experience before treatment, and not to mention the fear of this disorder permanently changing my life (career, dreams of starting a family, my love of singing). I’m forever changed in every way.

Does anyone relate?

What types of pain management have you all used? I’m currently on 800 mg of carbamazepine and 600 mg of gabapentin, with TN symptoms coming back again. Under the care of my OB, neurologist team, and an upcoming maternal-fetal medicine specialist, I’m going to try to get pregnant in a couple of months after taking high dose folic acid for a while. Since I’m going to try to get pregnant soon, my neurology NP doesn’t recommend upping my carbamazepine dose in case the MFM specialist would just lower the dose again, and she says I can supplement with an extra 300 mg of gabapentin when needed (I’ve already done this 3 times).

Looking ahead, I know my pain management options regarding medication will be limited when I, God-willing, get pregnant.

I was wondering what other types of pain management you have all tried and whether they worked for you. I already know of botox (which I may try soon), nerve blocks, acupuncture, rhizotomy (which my NP is wary about). I have also heard of people using lidocaine nasal spray. What else is out there that I can bring up to my providers? List as many as you can think of! :)

Hi all! I’ve posted once or twice before. I started experiencing symptoms October 2025 and was diagnosed January 2026. The first neurologist I saw prescribed gabapentin and carbamazepine, which I’m currently still taking. I had an MRI done and the radiologist findings found nothing, and the neurologist I was seeing took that at face value and told me idiopathic TN is the most common type (which I knew was a lie!).

About a month ago, I saw a new neurologist who specializes in headache and facial pain. He took a look at my MRI images himself and said he could see a “vascular loop”, showed it to me himself, and explained how it looked like a blood vessel was touching my trigeminal nerve. I started crying because I finally felt seen and like I had a doctor finally taking this seriously and taking the time to actually look at the images himself. It look less than 5 minutes.

He told me surgery would be a last resort since it is brain surgery. He said me being on carbamazepine is the best way to treat it, especially since I’m responding well to it for the most part. I’m not 100% pain free, I still have small flares, mainly mild burning and aching around my mouth that comes and goes and experiencing shocks about once a month.

I’m on 800 mg carbamazepine and 600 mg gabapentin. I know going up in dose would treat the symptoms I’m still experiencing. However, my husband and I want to finally start trying for a baby. My new neurologist said that lamotrigine (lamictal) would be the safest medication to take while pregnant. He said we can start weaning off of the carbamazepine and gabapentin and slowly start the lamictal as soon as I’m ready.

My concern is that the lamictal won’t work as well, especially since I’m not 100% pain free with the carbamazepine currently. I know I’m not at a typical therapeutic dose, but I don’t want to go up in dose if I’m going to transition to lamictal soon anyway. I’m worried about it not working as well because I’m a teacher and I cannot deal with the severe symptoms I used to deal with while working. It’s impossible. And I can’t afford to not work either! I’m also worried about potentially losing hair, which is apparently a side effect. I already have diffuse alopecia and have spent around $2k on PRP treatment to regrow my hair.

The neurologist also mentioned that they do nerve blocks on pregnant patients to supplement treatment. I know things like botox and acupuncture also exist. I’m just terrified of having a severe flare in front of my students. It’s happened before and it was absolutely awful. But it’s also important to me that I try to get pregnant soon and have a safe pregnancy as well. I recently lost a lot of weight for the same purpose and I feel ready. I just need my trigeminal nerve to cooperate (lol). 🙂

I would love any advice or thoughts!