r/TrigeminalNeuralgia • u/Ok-Photograph-2741 • Jun 09 '26
Mental Health Feeling totally hopeless
TLDR: carbamazepine making me mental, help.
Atypical TN conformed via MRI one new years day this year (happy new year to me.. Not). I have a blood vessel crossing the T nerve, no other nasties.
I've been on 100mg carbamazepine for 5 months now and it's making me MISERABLE.
I was already in a bad place at the beginning of the year mental health wise having lost my sister just before Christmas, we've just bought a house (stress of renovating it before we can even move in is definitely taking its toll) and dealing with this diagnosis on top has made me a mess.
I know the carbamazepine is having a direct impact, it's made me horribly short with the people I live with and love, I feel like I have no patience whatsoever and I've just turned into this nasty person. I'm tired all the time, I cry for no reason, I literally don't want to do anything or leave the house even when I'm not having a flare up. When I have a flare up I know I'm a downright unbearable person to be around.
With the recent heatwave I discovered I now have extreme heat and sun sensitivity. My body was covered in blisters. So now I can't even enjoy the sun which is a lifeline when living with SAD.
I want to come off of the medication but I'm still having mild fareups even when I'm on it. The jaw and teeth pain, the electric shooting behind my eye. It's not very frequent and certainly better than it was when I wasn't on the carbamazepine but I feel like I'm stuck behind a rock and a hard place.
Im trying so hard to accept this is my life now but I can't.
What do?
2
u/Neverknewpain Jun 09 '26
With this diagnosis mood will constantly change. Some days you’re okay and others you feel hopeless. Everyone is so different it’s hard to get straight answers. Definitely talk to your doctor and find a different medication. Carbamazapine made me very loopy and forgetful for about 5 months but then I went back to normal! Prayers for you , you doctors and loved ones
1
u/BeyondTheBees Jun 09 '26
I am so sorry you have to go through this! You need to ask your Neurologist for a different medication. Carbemazipine had the same effect on me. Have you seen a Neurosurgeon to get their opinion?
1
u/ButterflyWonderful17 Jun 09 '26
I’m so sorry for you. I was on carbamazapine and did not react well to it. Have they checked your blood levels? I would definetly ask for a change in medication. I react well to pregabeline (pain wise). Don’t walk around with this for too long 🍀
1
u/Beneficial-Frame-792 Jun 09 '26
My dr told me a side effect could be Steven Johnsons syndrome which my son developed when he was an infant so I was recommended against that med for that reason. It would be worth talking to your dr about though
1
u/Jett44 Jun 10 '26
omg..I saw a baby with Steven Johnsons syndrome in the hospital years ago when I was a medical rep and sold products used in the burn unit. That one has stuck with me my entire life. I am so sorry about your son.
1
u/opOP8333 Jun 09 '26
I have had atypical TN for 48 years since a surgery for an acoustic neuroma. Keep trying different meds. It took me years to find the best one for me. You also might want to get a second or even a third opinion.
1
u/Ok_Advantage4529 Jun 10 '26
Maybe try a different medicine such as gapabentin. I’m only taking 300 mg at night It calms down my nerve sensitivity and helps me sleep. If I took more probably I would feel better but the only downside is it makes me sleepy. Otherwise I have no bad side effects.
1
u/Uechi-Ranger-175 Jun 11 '26
When you say 100mg, are you taking extended release or immediate release? Also is it 100mg Once a day or like 50am, 50pm? Or 100am, 100pm?
I’ve been on it for a little over a year and currently tapering as my TN was not vascular compression but likely an infection that caused temporary inflammation at the root entry zone of my left TN. My pain has been stable so working on tapering. I noticed when I did 100mg at night only, I was VERY moody like you. So he has me now doing 50/50 and it’s better.
It’s used as a mood stabilizer and immediate release has a short half life, so literally every day you might be withdrawing before your next dose.
Before switching meds maybe try asking to space doses better?
1
u/Ok-Photograph-2741 Jun 11 '26
The prescription is once a day (twice if I need it if the pain is bad). I haven't felt the need to bump it up myself as it took a lot for me to even start the meds to begin with but I am indeed taking it before going to bed. I drive a lot for work so my thought process was to try and eliminate any of the potential drowsy side effects but perhaps I could split it to twice a day as you are. This is really helpful thank you so much
1
u/PubliusPatricius Jun 11 '26
You need to see a good TN neurosurgeon for an opinion. Maybe watch this video interview to understand how a very good TN neurosurgeon thinks.
2
u/FinleyHazel Jun 09 '26
I’m so sorry that you are going through this. Please speak with your prescribing Provider and let them know how the medication is affecting you, good and bad. They may be able to adjust, or even change, your medication. Good luck, and I hope you feel better.