This is my first blog post - I’m writing with the hope of finding a community of support for those affected my Trigeminal Neuralgia. I don’t know anyone else that suffers from TN, and I have yet to meet someone who even knows what it is, so I’m leaning on y’all for insight and support.
Some background on me: I’m only 24 years old. I suffer from Medullary Nephrocalcinosis (chronic kidney stones, yay!), Endometriosis, and Chronic Ovarian Cysts. I have passed over 8 kidney stones in the last 4 years, so when I say that I know pain, you know I mean it. That being said, I have never experienced anything even remotely comparable to TN.
A little over a year ago, I started experiencing sudden shocks to the left side of my face. I felt radiating pain across my cheek, down my jaw, and into my teeth. I was terrified - the pain would last anywhere from 5 seconds to 2 minutes. I was screaming, in tears, scared of what was happening to me. This first episode lasted over a week.
Almost exactly a month later, the pain returned. I couldn’t move, sleep, eat, or drink. I tried taking narcotics - they didn’t even make a dent in the pain. I tried smoking weed - nothing. I tried muscle relaxers like tizanidine and sedatives like xanax - nada. Ice packs and heating pads made no difference. I even went to the dentist to see if I needed a root canal, but my x-rays came up clear. I have suffered from TMJ in the past. Thinking that it was some insane level of jaw pain, I even booked an extremely overpriced massage for my neck and jaw, only to leave the appointment in more pain than when I had arrived.
I remember calling my mom and telling her with genuine fear in my voice that for the first and only time in my life, I wanted to die. I was desperate to make the pain stop. I literally didn’t care about anything else in the entire world; I just wanted relief.
Strangely enough, the pain disappeared as suddenly as it had begun. Unfortunately, the peace only lasted a month. By the third episode, I felt genuinely suicidal. I had taken every kind of pain medication I could think of. Finally, I went to the ER, where they gave me an injection of Bupivacaine in my face and I finally felt like I was able to breathe again. However, I continued to live in constant fear of another attack - I felt afraid of going out, brushing my teeth, drinking something too hot or too cold, taking my dog on a walk, and even showering.
Not long after, I went to my general practitioner to get a referral to see a neurologist. She put me on a small dose of Lyrica in the meantime, which made me extremely drowsy and exhausted. And, unfortunately, I continued to have attacks.
FINALLY (two months later) I was able to see a neurologist who explained to me that I likely had trigeminal neuralgia, and that it was extremely rare in people my age (I was a young 23 at the time). He switched me from Lyrica to Oxcarbazepine (400 mg per day). Much to my dismay, I continued to suffer from painful attacks, so he increased my dosage to 600 mg per day. Since then, the pain has pretty much subsided. I have only had 1 attack in the last 7-8 months.
SIDENOTE: I was not informed that Oxycarbazepine significantly reduces the effectiveness of my birth control, which is infuriating. 7 months into taking this medication, a CVS pharmacist asked me if I was aware of the interaction between my the Oxycarbazepine and my birth control, and proceeded to inform me that my birth control is no longer a reliable contraceptive, and that I would need to use a back-up method. For a 24 year old, living with her boyfriend of 4 years, I was absolutely pissed that my neurologist hadn’t explained that to me when he prescribed it to me.
After recently suffering another attack, I made another appointment to see my neurologist, ONLY TO FIND OUT THAT HE HAD RETIRED 3 WEEKS EARLIER AND NO ONE INFORMED ME. I don’t understand how that even happens. It took me months to see this guy, and when I try to make a follow-up appointment, I’m informed that he has retired? So irresponsible and negligent, in my opinion.
Moving on - I recently had another MRI done, which indicated that “the vascular contact of the cisternal portion of the left trigeminal nerve by the left superior cerebellar artery which runs along the superomedial margin nearly the entire cisternal course, as well as a small venous structure which contacts the inferolateral margin of the left trigeminal nerve at the mid cisternal segment.” Whatever the hell that means.
In short, my new neurologist recommended that I consider MVD. After doing some research, I’m pretty scared - not going to lie to y’all.
To be honest with you, this just feels surreal to me. I haven’t been in pain for the last 7ish months (excluding one brief episode) and now all of the sudden we’re talking about opening up my head and drilling into my skull?
I’m unsure of what I should do / how I should feel.
Frankly, I haven’t had to deal with the pain in a while, so my perspective is skewed. Granted, I don’t want to be on 600 mg of Oxycarbazepine for the rest of my life… I’m only 24 years old for christ’s sake. I feel fine right now, but if that pain hits me again, I know that I would do anything to make it go away. But who knows when that’ll be? Beyond that, I’ve never undergone a surgery like this - I have had a lithotripsy for kidney stones and a Mohs surgery for a cancerous mole on my face, but that’s it. I’ve only had stitches once in my life, and I’m terrified at the thought of having a catheter inserted, shaving part of my hair off, dozens of stitches, a metal plate in my skull, and a month long recovery filled with nausea and headaches. I’m petrified of complications during surgery and potential post-op problems. Beyond that, I’m nervous to take that much time off of work and falling behind at my job. I’m scared of having to stay in Dallas (with my parents) and being away from my boyfriend, my beloved husky puppy and my friends for so long. I’m nervous to put that all on my plate and to force my parents to take time off of work to take care of me for such an extended period of time when the medication seems to be working ‘okay’ for now.
Is it better to do the surgery now, when I’ve been pain-free for a while or should I just wait and see if it gets worse? I’m not sure - maybe it’s not even necessary (or is that just wishful thinking?). Or is it better to wait until I absolutely need it? What are your thoughts?
I’m sure this blog post may seem immature and, at times, whiny, but I was a happy, social 23 year old until a year ago. I’m struggling to handle the psychological burden and emotional weight of this condition. No one seems to understand the depth and severity of pain TN causes a person - most of my friends would complain about being hungover from drinking too many Redbull Vodkas or partying too hard on a work-night, while I felt myself slipping into the deepest hole of despair and pain that I could possibly imagine. Without a support system of others suffering from TN, it’s hard to cope.
I hope you all can shed some light on your experiences with MVD (surgery and post-op recovery) and maybe some recommendations or advice to help placate my nerves (no pun intended).
If anyone my age has experience with TN, please please please reach out to me and share your story. At the end of the day, I think we all just want to know that we’re not alone in this fight.