I’ve had TN for about 5 years now and it will come and go over time, sometimes a few years before another attack. Well currently it came back and this is the worse I’ve ever had it. I usually have my pain on the right side of my face, but this time the pain seemed to move towards the center of my face, therefore it’s affecting my sinuses. If I touch my front teeth I can feel the pain triggering and it seems more constant. When the pain is more persistent my nose would run and I would get congested. Has anyone experienced this type of pain? I’ve been taking only 200 mg of carbamazepine and
Baclofen and it doesn’t seem to be helping. Any suggestions or ideas of what these symptoms may be associated with. I automatically think it’s TN but I’m hesitant to believe it, because the type of pain is different then I’ve had in the past.
I too have had this type of pain in recent years - left nostril (which seems to run but is too painful to hold tissue to it). My pain is similar to TN. I thought I had a tooth problem but I’m still thinking it is TN.
I’ve had TN for over 15 years, have had all treatments you can have, nothing worked. I take 1000mg of carbamazepine a day, it’s the only thing that helps with the pain. I do get the runny nose…only on my right side. I’m able to touch my face only bc I’m on so much medication. Most of my pain is in and around my upper right teeth, I do have pain on my lip and nose sometimes but not constant. All of this bc of a botched root canal. I can’t get my teeth cleaned at the dentist anymore bc it sets off a spasm in my mouth that feels like fire explosions. Thank god you have pain off and on and not constantly. I hope your pain never gets worse than it is now.
I have had this pain now for 6 years. It’s in my teeth and sinuses. The pain switches sides. I have tried gabapentin, but It didn’t work for me. I am now taking 200 mg. a day of pregabalin which so far is giving me relief.
I have T. N. In all three branches. It is constant. I have found using Flonase every night helps my nose and the sinuses from triggering worse pain. I also use a salve on my face. I use that along with a muscle relaxer now. I had to stop Trileptal because after years of use, sores began forming in my mouth. Staying out of wind helps me. If you aren’t trying the spray, I would suggest trying it. Wouldn’t hurt. I go to the barn most days(horses and a new filly two weeks old) really stops the running for me! I hope this helps. Praying you will find answers that will help you. If your nose has pain in it like mine, I know the wiping has to be excruciating.
I have posted on here with my crazy facial pain. I am still trying to figure out the source. I feel we can have more than 1 thing going on. Not doubting nerve pain for anyone. I just feel like tmj, sinus issues, dental & nerves we can have more than 1 issue. My left maxillary sinus, nose, lower left jaw & now my right maxillary sinus are painful. I was on Duloxetine 40 mg & it didn’t do anything so I decided to quit it. I know I am also low dose so I probably need stronger. I had a tooth extraction last year that I totally regret. It made things worse. My nose pain is annoying. Left sided pain. I have signs of inflammation inside my nose. I get deep pain inside left nostril & just feel like pressure against the Septum wall. I am getting a sinus scan this week. On my lower left jaw I had xrays & more xrays, & I do have a chip or a crack on one molar. Endodontist drs said to just put crown on it. I got a root canal & apicio on that tooth & I decided to pull that tooth bc I wonder if the chip is deeper & causing the lower left jaw. I have a sinus cyst in my left jaw & it’s possible it’s a tooth cause my roots are high near or in sinus. So I am still trying to figure it out. In the end if nothing else works then I can accept nerve pain. I also went to a TMJ dr last year & the scan shows bone on bone on my bad side. So TMJ can be an issue too but I don’t think it’s causing my nose pain.
It’s nice to come on here & get support & see if anyone is experiencing similar. We are all strong. No one can understand facial pain better than us!
I have had atypical trigeminal neuralgia for9 years. It started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant and moves around. It’s mostly moderate to severe. With the pain I have ringing in my ears, noise sensitivity, twitching (usually not visible, but I can feel it), burning eye (right side only), and depression. I have received something like 18 different diagnoses ranging from TMJ to cluster headaches.
I’ve tried a lot of different medications. Most didn’t work and they all had side effects. What did work for four years was 10 mg of oxycodone every 4 hours and that is the only thing that made me normal again. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of the new DEA rules and my Neurologist’s panic.
Last month my neurologist finally gave me a prescription for 2 15 mg oxycodone to be split in half and taken twice a day. It works but is kind of like a tease, because I need twice that. No one will give me anything for break through pain which has to have a narcotic in it.
And I’m now 72 and ashamed of our government, DEA, etc.
Suggest that each of you talk to your Dr and see about testing a narcotic out. People with this condition, TN2, almost never get addicted as they are in real pain which is why narcotics have a use.
May I suggest you try CBD oil spray in your mouth/on your teeth. I found almost immediate relief. I am normally on trileptal and a little Gabapentin. But if the pain disturbs my sleep a small spray helps. If I have trouble eating I use a bit of MJ which does not effect food taste.
Thank you everyone! It sounds like my pain isn’t unusual as I see the similarities. I will take your suggestions and use what may be appropriate for me. Thank you so much. I truly appreciate it. It lets me know that I’m not alone.
I also had sharp pain (electric shocks) when touching around right hand side of my nose and also very sensitive gum/teeth. Pain commenced back in 2015 after a long dental procedure where many nerves around my sinus cavity were disturbed. The pain originally travelled around my molars then into my lip, then eye and forehead. I was very sensitive to cold wind and the shocks and pain would get worse during change of seasons. Tried Tegretol for a short time and that had very little effect. Tried quite a few things like manipulation of my neck by a chiropractor which gave me some relief - mainly moving from sharp pain/shocks to burning pain on my face which was much more palatable for me. Swelling around my right eye was always a good indicator when the pain/shocks would return. I am sure that the change of season would affect my sinus and that this was also a trigger. Last August was probably the worse time ever and pain was about a 10/10.
What has worked lately (since September last year) is a multi-pronged approach. I have given up the Tegretol and decided to go natural. I went to get acupuncture from a China trained acupuncturist specialising in facial nerve related pain. After several weeks of treatment I was almost totally cured. I just had a few small sparks when eating. In between acupuncture I used a natural product called Sinus Forte - 2 tablets each day to assist with keeping sinus inflamation at bay. I also used another product called Palmitoylethanolamide (PEA) twice a day together with vitamin B1. The PEA and Vitamin B1 is to help with reducing inflamation around nerves and help rebuild the mylein sheath around any damaged nerves. There is no definitive medical evidence but thought I would give it a try and it seemed to work after about 3 months. I had a very minor relapse a few days ago (because I stopped taking PEA and sinus Forte for a week) but when I went back to the acupuncturist I am all good again. AM also back taking Sinus Forte and PEA daily.
I don’t know if I will ever be totally cured but the length of time between acupuncture treatments is slowly expanding (now have one treatment a month apart). Also I am waiting to see what happens when there are temperature changes as this is when it really flares up. I will do anything to avoid surgery - have heard too many terrible stories of people ending up worse than before the surgery took place.
Suggest you have a look and listen to the discussion between a Doctor and Neurologist about ear acupuncture in the link below. Very enlightening discussion about how modern and Chinese medicine interacts and can support each other. Acupuncture isn’t for everyone - it has helped me so far but I don’t know if it will be a forever fix. They say that after 2 treatments a week for 3 weeks and your are not responding then it won’t work for you. Mine worked only after two treatments in one week.
Copy and paste this link https://vimeo.com/237101122 It is a long discussion but worth listening to it all of it.
I wish you luck on your journey and hope you find a solution to get your life back.
Charles
Yes, I have ATN in this location. Mine is from the bottom of my nose upwards on both sides. It feels like a bad sinus infection with the pain and pressure. It often feels like someone is gripping the bridge of my nose. The original pain was over my left eyebrow. I have done it all: MVD, stimulator implant, botox, about 30 different meds. The only think that worked was oxycodone. When my doctor would only give me a very limited amount, I decided to try kratom. It has been life changing for me. I now have pain control (level 2-3) on most days without all of the horrible side effects. I only take about 2-3 oxycodone per month. I am off all other meds. It is truly a blessing in my life. If you want to hear my story, check out a podcast I was featured on. https://youtu.be/jBeO4AGd8sE
See my response below in the comments. I was in your exact same shoes, but I found a solution.
Have had TN for 16yrs and it has moved around. Since I have taken 1000mcg B12 - tablet under the tongue every day, it has been so much better and more manageable.
B12 helps build your Nerve sheaths which makes a barrier between the nerve and blood vessel rubbing it & causing pain. ATM the TN is not happening in my Jaw - either side; but is beside my nose either or both sides. Think it has found a weakness where the nerve sheath is thinner…
My dentist taught me that if I think it may be a tooth; to tap the tooth with a metal handle of a knife or fork… If it is a tooth problem it will really hurt - it never hurts and actually the pain seems to go away when I do this… sort of sends a signal the other way; so I know its TN.
ATM when the pain starts, I put a heat pack over my nose and it settles it down… My TN starts if I get cold or a cold breeze… I also warm my room a couple of hours before I get up (split-system auto turns on at 4am and takes the temp to about 19 degrees). So far this Winter I am managing it by keeping warm and busy - which helps block pain, when you concentrate on something… mine is gardening… Hope this helps…
I have recently been diagnosed as having chronic migraines (with all the excruciating symptoms of TN). Your symptoms are usual for me when I am symptomatic and I have been taking Gabapentin (900mg/day) as Carbamazepine made me manic. I have also started on propranolol (40mg/day)to reduce my blood pressure as any activity can cause me a painful trigger. The Gabapentin has reduced my pain from a 9.9 to a 5 and although I’ve been on propranolol for 2 weeks, my severity and frequency of pain attacks has decreased. My next step is an occipital nerve block before possibly Botox.
I also agree with the tooth tapping but in my case only when it is tapped from the side that I feel no pain and this had my dentist confused. Any pressure from below (e.g. chewing) and I would be in agony.
I hope you can find a solution to your pain.