I don't post anything on here but joined a couple months ago after my diagnosis. Today has been a really frustrating day. I was diagnosed with TN II and I just can't believe the diagnosis. Does anyone else just feel like they have a constant toothache? I've scheduled yet another dentist appointment to have them xray one more time to make sure there is nothing wrong. I hate the dentist but I pray that they will find something that they can "fix".
Can anyone tell me more about type II? Today I actually had swelling in my face. I called the doctors office convinced that it must be a tooth problem because I didn't know this could actually cause swelling. The docs told me that the swelling could be a symptom but to keep the dentist appointment just to confirm or deny this diagnosis (in my mind, I guess). I sobbed on the phone when they told it could still be TN. They asked what medication I'm taking and I told them. The nurse asked if the hydrocone was working and I told her no, but that I don't want anything else. I just want the pain to go away.
I dont' have any pain in the morning but as the day goes on the pain comes and then never goes away. I don't have any sensitivity to cold or hot, brushing my teeth and washing my face does not hurt. Pressure on my face actually feels better. I have even bruised my own cheek from pressing too hard. Sometimes a cold water bottle on my face helps.
I'm just going to go on and on I guess because I'm feeling really down. I'm taking Trileptal 1200 mgs, I just started an antidepressant nortryptiline)because I really thought that work stress was excarbating the pain. I take hydrocodone in the evening only because I can't take it while I work. I'm getting tired of the doctors acting like I'm drug seeking. The last time I filled a script for the hydrocodone I was told, "this better last you a month". I was given 30 and I'm here to tell you that they will not last a month. I have taken 1 and 1/2 today and still feel the pain. I just don't understand this. I want to get back to my old self. My husband wants the old me back. I have become a misterable person just trying to tolerate this pain and no one understands.
Does this sound like anyone else? I have thanked God that I don't have the electric like shocks that people talk about but the constant aching/hurting feeling in my face is pretty bad too.
If anyone could post and tell me if this sounds anything like what you have, that would be great.
Hi cas, I get 24/7 pain in my teeth. It's my main pain problem. I think it's great you started taking Nortriptyline -- not for depression though -- it's actually a really good med for getting rid of, or at least lowering, neuropathic pain. You'll need to slowly taper up with your doctor, but once you get to over 100mg/day, you'll likely find that it helps your pain.
I know how hard it is to feel like you have a constant toothache, and keep thinking it must be the teeth. It's not your teeth though. If it is, it will eventually show on an x-ray, or puss will ooze out, or some unmistakeable sign that it's dental. But since that's not happening now, stick with the meds. Give the Nortriptyline some time to work and you might be nicely surprised.
You sound just like me. My husband told me last dr's visit I better not walk out without pain meds because he couldnt take watching me like that anymore. When you ask for them they act like your abusing them or looking for a high. Its like the drs dont even understand the pain. Before I got my diagnosis I was convinced I had mouth cancer, or any explanation to my constant pain. I only get the electric shocks a cpl times a day but I have the constant burning/aching. It was hard for me to swallow the realization that I have this at 25. I would much rather it be something curable. Hang in there and do not let the disease run your life. I have for the last two months and all it did was bring my children and husband down. Once they work on your meds a bit you will get some comfort. Im taking tegretol and hydrocodone. My pain is not gone by far but is minimal compared to the last two months of hell I endured.I still have bad days and I understand your pain at the end of the day. I usually feel pretty good in the morning, but I work 2pm to 10pm. By the time I get off work im in agony from talking all day. It is 4 am right now I was sleeping really good but then my 2 month old woke up and when I woke up to feed her my whole face was burning. Now im awake trying to get some relief so I can go back to sleep.I hope you find comfort soon :(
Hi. Yes. My pain feels like a toothache. I have had the tooth check many times. No one will touch it. I did have Gamma Knife to the ganglion (cheek) nerve bundle on April 11th. I cannot take drugs to relieve the pain but I do get relief from a topical (20% benzocaine) and I apply it to the tooth all day long. The Gamma Knife procedure seems to have helped and I found great relief from yoga (gentle). I'm trying acupuncture next week (Japanese). I do also get relief from pressing on my cheek/jaw and it is bruised also. Also, I am seeing a psychologist to get through the depression from the contant pain. Hot pad at night to ease the tension helps too. I feel when reading these posts that mine is better than most. Get an MRI and see a neurosurgeon. Tell him to call Dr. Adair Prall in Denver. He is the only that I know that will do the Gamma Knife to the ganglion area. He had me do two ganglion nerve blocks first to determine that this was the procedure for me. Tooth is feeling pretty good today after yoga. Really. $5 for the class vs. $60k for the Gamma. Go figure. Good luck and hang in there.
Thanks for posting back. I really appreciate hearing suggestions and advice. Although I'm hopeful that I'll need a root canal (God, I never thought I'd utter those words) it is comforting to know that others have the same type symptoms. I haven't had the shock like feelings so I guess I'm lucky! Talking is definitely a trigger and unfortunately I have a talking job and can't get around that. On the weekends, I try as much silence as I can. Isn't that sad?
I just can't imagine living like this for the next 30 plus years. MommyHeather, I'm so sorry, you are so young!
Deb, I had an MRI and it was normal. Would they be able to perform that procedure?
Crystal, I will ask the doc to increase my nortryptiline more quickly, he only has me on 25 mgs this week to start 50 mgs next week. I'm hoping this will work for the pain and the despair!
Hi. Good Morning. I hope you are feeling ok. MRI done was just to rule out real TN and MS, etc. The ganglion nerve blocks are what made the docs agree where the pain was coming from (my cheek/tooth/jaw). That allowed me to have Gamma. I feel pretty good today. One month from the Gamma and I do have flare ups but I think it's worth checking into. DO NOT get a root canal. Not that I'm an expert or anything but it would be better to have the tooth removed than undergo this risky procedure. There is a book called Root Canals Gone Bad. Don't know the author, but, it helped diagnose my sister. I had two root canals and who knows if this aggrevated the TN issue or not, but, I will never get one again.
I went to the dentist yesterday and they took me straight back to do another CT scan. I've called the dentist many times, as I've said before. Dentist came in with a prescription for zithromax and said she saw something in my sinus, the side that has pain. It was like a revelation for her, for me, I thought "great, I have a sinus infection on top of this". She sent my CT scan to UNC Chapel Hill for a specialist to read it, so we'll see. My CT scan in March was clear.
Maybe it is a sinus problem affecting my teeth, but I kinda doubt it. She told me on the way out, "well, at least you know you're not crazy."