Hi, I’m new to this group. I started experiencing left sided facial pain 4 days ago, yesterday was so unbearable I ended up at the urgent care. The doctor there told me I have trigeminal neuralgia. No tests were run or anything she just based this off of my symptoms. She prescribed me 200mg of carbamazepine once a day and some Vicodin for pain. I haven’t yet taken the carbamazepine because I am scared and unsure that I want to take something so serious when I’m not even sure that her diagnosis is correct. This is the first time that I’ve experienced this type of pain. I had a cold earlier in the week and just thought I had a terrible ear/sinus infection. I had some dental work done a couple months ago on the left side and my teeth had caused varying amounts of pain since but nothing that wouldn’t go away after a couple ibuprofen. Could this be a tooth issue? How do I even go about getting an accurate diagnosis? My husband recently switched jobs and we won’t have health insurance again for a couple months, is this something that will get progressively worse or will I be okay to wait until we’re insured again? Any help is much appreciated thank you!
There are two types of TN Pain - some of the time starts shortly after dental procedures
MANY here have gone on to have more and more and more dental work done all for nothing - so don't take that as your first route
TN1 is a lightning bolt zap type of pain that
comes in spurts
the other type is a burning pain/boring/ and doesn't come and go so much just stays
the med you were given was correct - anti-seizure meds
most times this cannot be shown on MRI - doctors just go on patient symptoms because we are rare 12 in 100,000
You can go to a neurologist and get confirmation--Find one that DOES already have TN patients.
You can ask for Rx lidocaine patches from your regular doctor for topical relief - you just cut the size you want and cuts pain down for 12 hours. It takes a couple of weeks of the med to start working - and most go up from there
Keep reading and asking while you are figuring this out - we'll help you along!
you can go to google - then go to images - then type in trigeminal neuralgia -- will show graphics of where TN pains are and how they go from the brain to face/teeth
If you have this - we go in and out of remission with meds or surgery - for now it's a permanent condition until more research and a cure come along.
Trisha, I am new as well, going on 4 weeks. I don’t have enough knowledge yet to help you, but it is nice to know we are not alone.
Shawna
Thank you so much for your replies, it really helps to talk with other people. When I was told this yesterday I just felt terrified and depressed from everything I was reading on the Internet. Today is not so bad. I’m curious how bad side effects from the anti-seizure medicine are? For me the pain so far a constant dull ache with brief episodes of intense stabbing pain seeming to originate from my teeth/jaw.
Pharmacist is under-utilized resource - tell them what you want to know.
Most complain of fuzzy thinking - on higher doses - nothing fatal--
but the neurologist you find should be able to guide you if you need to go up on dose
If you do think you have TN
besides coming here - we have a very comprehensive book we use - it's the only one on TN with so many options - "Striking Back" by Dr. Ken Casey
and google those images!
My pain is the same as you describe and also on the left side, I went to two dentists sure I had a bad tooth. It is scary reading all the stuff online. I have figured out that air blowing on my left cheek/jaw is a trigger. Please let me know what you find out as time goes on.
Yes I did google the images and they do seem right in line with where I am experiencing pain. I am curious if this gets progressively worse?
Shawna- I haven’t found any triggers yet, things that seem to help are chewing/eating (oddly enough) and hot showers. I think possibly the cold makes it worse but I am not sure on that yet.
Usually it takes more and more med trials/doses to make life bearable. I would say that makes it progressive -
The meds drove me to THE top surgeon out of state - but you have to try a few meds before you need go that far
I’ve never been one to take medicine for anything really other than headaches, what about alternative therapy? I’m sorry I ask so many questions, my Internet service is limited to my phone until I get back to my computer tomorrow so I haven’t been able to read a whole bunch of stuff. I’ve been able to manage my pain today with ibuprofen every 4 hours, it is still painful but I am getting by. I’m hoping I can hold off on doctors appointments until I get insurance again in 2 months.
I am not one to take any medicine either. And I try to avoid Doctors and Dentists as much as possible. I have been very fortunate til now. Haven't had to go to the Doctor in 4 years. Very seldom do I even take tylenol. But that has all changed now. I am also interested in any alternative therapy. Let me know if you find anything. Don't be sorry for asking questions. If I had any answers I would gladly share.
Trisha said:
I've never been one to take medicine for anything really other than headaches, what about alternative therapy? I'm sorry I ask so many questions, my Internet service is limited to my phone until I get back to my computer tomorrow so I haven't been able to read a whole bunch of stuff. I've been able to manage my pain today with ibuprofen every 4 hours, it is still painful but I am getting by. I'm hoping I can hold off on doctors appointments until I get insurance again in 2 months.
The book "Striking Back" has alternative things - accupuncture - vitamin B-12 - and way to many here to name!
While I had to go off a med - I found a lady who does Reiki (energy healing) - it worked for 3 weeks - it was an unexpected gift!
Now THATs alternative as it gets LOL