Carbamazepine (trigeminal neuralgia)

[lovin'fl]

I have a new primary who is a PA and she treated me for TN (I had 2 flares, Jan and June 2024). She put me on carbamazepine after googling. I haven't been to a neurologist. But know it's TN (left lower jaw/mouth/face). Been on the meds since June with no bloodwork. I just made appointment with her for next week to ask for some bloodwork for liver check and CBC (can effect plasma I think). Am I correct? And is there a need to increase the levels of the meds (I think I read something like that too)? Any and all info is appreciated. Also, what about taking gabapentin instead? ANd can I take that while being on BP meds? And what about going off the meds and only then taking when a flare happens? I tried to ween off and started having little nerve shocks pretty much right away. But maybe it would be like the other flares and only be like 10 days and then a break for 6 months (then go back on the meds to maybe have flare last a day or 2)??

 

[lovin'fl]

Also, have been having pretty bad feet pain (left foot worse than right) the past 3 months and foot Dr can't figure it out. Sent me for MRI which showed few stress fractures. He put me in boot, on steroids and ibuprofen. For past 3 months and not much better but he says Xrays look ok. I did ANA and RA blood tests which came back normal. Any possibility this is somehow from the carbamazepine or something to do with the TN?

I know I need to figure this out with a Dr. But my primary doesn't seem to know. Maybe I should ask for a referral to a nuero as well as asking for the bloodwork.

 

[lanejudy]

I think these are questions to ask your healthcare provider. If your PCP doesn't have answers, or you don't feel comfortable with their answers, request a referral to a specialist.

 

[cabanafrau]

I hope you get some answers that lead you to stability in health. I know absolutely nothing about what you're dealing with, but one thing I can say is that it is possible to be on both gabapentin and BP meds at the same time. Caution, I only know that because of dealing with needs of 3 elderly parents in floundering health at the moment. As for whether that's possible with all BP meds or if it's recommended in any way for your needs, I absolutely could not say.

The only one who can give you good info is your healthcare providers. All good luck to you.

 

[Pooh2]

Go get checked out by a neurologist who will likely order up an MRI of your brain.
TN and the foot stuff could be MS symptoms or something else going on.
TN is pretty rough to get through.
I only had two major episodes, now more minor shocks and some facial numbness.
I have not taken meds since the first episode (caused hives on top of facial pain).
Hope you find some relief.

 

[mickeyboat]

Yes, please get a referral to a neurologist. I was diagnosed with TN years ago by my PCP, and I let him try different meds for six months (gabapentin was one of them) with no relief before I begged for a referral. Turns out it wasn't TN at all - but a very involved sinus infection. That nerve pain was the most excruciating thing I have ever experienced, as I am sure it is for you, so you should at least have a neurologist review your case if you haven't so far. Also, even back then there were forums specific to TN that I found helpful. I don't remember the names of time, but perhaps you could get some good advice there. I am sorry you are going through this. I know it is awful!

 

[lovin'fl]

Thanks everyone. I have an appt with my primary and will ask for bloodwork as I am worried about my liver and plasma levels. I will also ask for a neuro referral. The 2 TN flares I had were awful. Around 10 days long of these electric shock zaps down face from ear and up lip and into mouth (all bottom left of mouth). Even showering would trigger it or talking or swallowing a drink. It was an unbearable 10 days. The second flare was less bad than the 1st but still no picnic. The carbamazepine has kept it away. When I tried to go off it, I did have some very very mild little shocks. I really want off the meds because I worry they are harmful. My primary didn't know much about any of this and had to google. So that also worries me as I am pretty sure I should be getting bloodwork ever so often. The feet thing is also bugging me. Boy, it sucks getting old (and I am only 51 but sure feel like 70).

 

[DisneyTeacher]

I had a friend misdiagnosed with TN about a year ago. It wasn’t TN but really presented like it. Luckily she was finally correctly diagnosed and was able to get off Carbamazepine but she had a couple of seizures when her doctor started tapering her dose. She had never had a seizure but because it’s a seizure medication it can cause seizures if you don’t taper carefully.

Good luck, I know TN is a rough one.

 

[OrangeBirdGirl]

I was misdiagnosed with TN. I had the horrible pain you are describing in my left side jaw/mouth/face for 6 months. It was almost constant, couldn't even sleep. I remember, I would just wish I was in some freak attack where I would get my jaw busted and maybe when it healed I would feel better. The only relief I could get is rubbing my jaw and only relief when I was actually rubbing it.

I'm curious how your Dr diagnosed you with TN? My Dr only did a physical exam and talked about symptoms. I did the carbamazepine and while it helped, I was allergic to it and stopped. It took me about 6 months to finally go to Dr so then I was on the meds for about a week then stopped for reaction and I had a routine cleaning.

I told the dentist on my problem. The dentist said I needed a root canal. I was very leery, how could that be causing all my problems? He showed me on the X-rays and explained how it was right on the nerve going down my face. I had him do the root canal and I had instant relief.

The actual person was not my family Dr but a PA as the Dr was out. I won't go back to this PA again. TN is a very serious condition after I was reading up on it and I don't trust that PA after just writing that RX without any further tests to verify that was what it was.

Good luck in getting it under control.

 

[jo-jo]

Add me to list who didn’t have TN. Saw dentist, saw dr, no body saw nothing. Pain was around cheek bone. Awful. Had appointment with neurologist but not for another week. The day of the appointment, my lower jaw swelled up.

Turns out the root canal I had few years before, there was a tiny tip of root that got infected. I had no pain in the lower jaw. All higher on face.

 

[lovin'fl]

I was misdiagnosed with TN. I had the horrible pain you are describing in my left side jaw/mouth/face for 6 months. It was almost constant, couldn't even sleep. I remember, I would just wish I was in some freak attack where I would get my jaw busted and maybe when it healed I would feel better. The only relief I could get is rubbing my jaw and only relief when I was actually rubbing it.

I'm curious how your Dr diagnosed you with TN? My Dr only did a physical exam and talked about symptoms. I did the carbamazepine and while it helped, I was allergic to it and stopped. It took me about 6 months to finally go to Dr so then I was on the meds for about a week then stopped for reaction and I had a routine cleaning.

I told the dentist on my problem. The dentist said I needed a root canal. I was very leery, how could that be causing all my problems? He showed me on the X-rays and explained how it was right on the nerve going down my face. I had him do the root canal and I had instant relief.

The actual person was not my family Dr but a PA as the Dr was out. I won't go back to this PA again. TN is a very serious condition after I was reading up on it and I don't trust that PA after just writing that RX without any further tests to verify that was what it was.

Good luck in getting it under control.

The pain, yes, I felt similar to you in wanting to have my face smashed to stop those electric zaps down my face. It is so debilitating. And exhausting. I had a melt down in a restaurant with the hubby and son and had to run out of there. I was just so miserable. Shouldn't have even gone.

When the first flare happened, last January, I was going to the dentist to have a crown replaced (old one broke off...was on right side not left where TN is). I had the dentist look and do xrays and they said it wasn't a tooth. I had been in car accident a week prior (rear-ended hard enough to total our car). So I also went to urgent care to see if it was due to accident. They did a neck xray and saw nothing but put me on a steroid pack which didn't seem to help. They gave me a referral to neuro which I wish I followed through on that but did not as around 10-12 days from the start it had stopped so I thought it was a one a done thing. I also had a bad coughing virus right around then and thought maybe it was from that and would be gone for good.

So, yes, Dec 2023- Jan 2024 I had a crown break off AND had a 3 week coughing virus AND was rear-ended which totaled our car AND had a flare of this TN thing. That's not even the half of it (bad stuff that happened) from Aug 23 to now. But that 4-5 week period was awful! Merry dang Christmas.

So I happily went on with things thinking that nerve pain flare was a flukey virus or something. Until June 2024 when flare #2 happened. I went to the primary (she is a PA) this time. I told her I thought it was TN and told her all the stuff mentioned above. As well as telling her how it felt and all that. She agreed with it being TN and put me on the carbamazepine which I hate but no nerve pains while I am taking it. Though I suspect that med is causing the feet pain somehow. I have TMJ so maybe that's what's caused the TN. But I do think I need to go to a neuro to be sure it's nothing else and to maybe do another medication instead.