Please help to identify

Hi everyone!
Year ago, right after my son was born, I started having teeth pain. I went to dentist, he didn’t see anything wrong, I also couldn’t really point on which tooth hurt, but I narrowed it down to one that already had root canal done, so it couldn’t hurt…anyway I did a lot of online research and found out about TN, but my pain wasn’t that bad at all, it was more like a dull and constant pain, Advil was helping. Another explanations I found was stress( I just had baby, he was in NICU for a month, and in general being mother is much more stressful than I imagined), so I thought it was stress and lack of sleep and may be air conditioner gave me “cold” or something. And one day, first day I slept for 8 hours straight, I woke up pain free!!! It was very strange, but I was happy! Needless to say in couple hours I wouldn’t even remember I had any pain at all!
So year letter…
First my husband started to get severe headaches, non stop! ER twice, doctors…nobody could find anything, he literally was laying all week long, took of from work, and eventually in combo with bunch of pills it eventually went away. Right after, my son got diagnosed with coxsackie virus! And I started to show symptoms 2 days letter. It wasn’t that terrible, but being seek and taking care of baby - you need superpowers! Anyway, I was exhausted! Lack of sleep, stress, worrying for husband, fever…all at once!
Then, once I felt better after coxsackie, I started to have slight dull pain in my jaw again, same as year before. So I decided do what I did then: sleep, less stress( thankfully husband got better and now could help me around), and I switched with him sides, so I won’t sleep near AC. I also went to dentist, x Ray showed that my lower wisdom tooth is kind of diagonal and pushing on the other one from underneath. But she said that she doesn’t think that pain coming from it. She send me to root canal specialist. He looked, x Ray again didn’t show anything wrong, but the Phisical exam kept pointing out at the same upper tooth! He was about to treat it, until I said about last year episode. And also that pain comes and goes, gets really bad when I lay down that even my eye hurts. So he decided to wait for couple weeks. Also besides that tooth he wanted to treat, same from last year on button jaw hurting, but Phisical tests didn’t show anything, tooth is dead.
By now I researched and red tons of info online. But some answers I still didn’t find!
I’ll describe the pain. It starts mild, and then it’s either stays the same and then disappears, or gets so intense that I can’t move, I just freeze and hold heating pad to my face. Heating pad isn’t really helping pain to go away, but just makes it more bearable. I have tried ibuprofen 800, hydrocodin 500, muscle relaxer, naproxen, and took first doze of antibiotic today just in case. And nothing helped! I would mostly take it at night, when I would wake up from stabbing pain, would lay for half and hour or so, and eventually pain would go away…I would think that pain killers helped, but no. Unfortunately couple hours letter I would wake up from same pain episode. I wasn’t able to make apointntment to neurologist yet. I went to walk in clinic just to get some professional advice, not just He kind of said it might be TN, but can’t diagnose it. He prescribed me muscle relaxer and naproxen. And said if pain doesn’t get better within 3 days, go see neurologist. So far it didn’t help.
Tonight pain got worse. It stays longer, it actually doesn’t go away unless I use heating pad or hot towel is even better.
So my question is: should I treat the tooth that was responsive to Phisical exam by dentist( it hurt more to touch, and extremely painful to cold). I am just afraid to kill a completely healthy tooth, as x Ray shows. But again it hurt during test, others didn’t( but throughout the day pain moves around from tooth to tooth). Or it’s possible that I have TN and tooth pain reaction to touch and cold is normal?
Also does it even sound like TN?
I have pain for long periods, and I can’t figure out how to stop it. I don’t know if heating pad is just a coincidence… But so far it hurts for 3 hours already and NOTHING helps! Only heat makes it better but temporary, once I stop, pain comes back.
Please, I know I might sound like a cry baby, but I need to understand if it could be TN. I know my symptoms different from typical. But what else could it be? I truly believe that people who have experienced this would be able to explain me this “phenomena”.
Thank you for reading this! I’ll be waiting for the responses!

Every time I read that someone convinced a dentist to extract a healthy tooth or to do an unnecessary root canal, I just cringe. I’m glad that during the year or two that I had occasional pain that I kept reporting to my dentist that I didn’t argue with him to do something even though he saw no problem with my teeth. It really does sounds like you have TN, but I’m not a doctor. Just because your tooth was sensitive to pressure or temperature doesn’t mean that the tooth itself is actually the problem. TN tends to flare up in relation to all sorts of stimulation. Its severity also tends to progress over time consistent with what you are describing.

Three days isn’t a very long period to wait for a medication to work since, unlike “pain killers” the medications that are typically prescribed for TN take a while to build up to a therapeutic dose. For the most part, the medications I have taken have been anticonvulsants. The only muscle relaxer I tried was Baclofen and I didn’t tolerate it well. Not only was it not as effective as the other medications I tried, but even on a small dose I was afraid I was going to slip into unconsciousness off and on throughout the day. It didn’t just make me tired (which all of the other medications have done); it made me light-headed.

I think you need to go see neurologist that is familiar with TN. I started out with ENT but he would only allow up to 900mg of gabapentin a day. The neurologist said up to 2400 mg was safe. I went up in stages to about 2000 mg a day and the pain went away. I have worked back down to 900 MG a day…This worked great for 6 months but I have it back or at least I do, so I will start back up until it stops. I also plan on going back to ENT to see if it is something else. I also do not believe that many dentist will treat this properly. Hope this helps. Good Luck

I am surprised how very similar your story is to mine. Mine developed after my 2nd child was born, initially I thought it was gum or tooth sensitivity. A few weeks later, I had bizarre itchy/burning/falling asleep sensation along my jaw and right in front of my ear. Then I developed the most unbelievable headaches I’d ever had. Then I had a numb patch on my cheek and went to see neuro. MRI head normal, but I had some positive antibodies associated with Sjogrens Syndrome. I do not believe everyone with TN has SS, but autoimmune diseases can be associated with it, and it is not uncommon for an autoimmune disease to show itself post partum.

My TN has evolved a bit over the year it has developed. The stabbing sensation in my eye and jaw can be crippling! I started gabapentin for the TN and it has truly helped. It doesn’t take it away completely, particularly the type 2 aspect but it really makes the type 1 dampen down. I’m also on Plaquinel for the SS… Not sure it’s doing anything but for now I’m staying on it.

I have felt extraordinarily sad when I think about living with this. I can’t even enjoy my post apocolyptic fiction anymore because I get upset thinking about how I would live off this medication! (Who needs food or shelter, right? Ha!) but the TN community has been a good resource here to read and remember to live. And I’m holding out for a future cure.

So do see a neurologist, try not to take too much naproxen, and hang in there! And love that baby! :slight_smile:

I’m not a dr, but to me it sounds like maybe you would have ATN (atypical TN) or some kind of facial pain. Certainly causes the constant tooth and facial pain.

because if you have to wonder if you have typical TN then you don’t. I know my V1 TN is the worst literal feeling of electric shocks that i am literally brought to my knees and almost pass out from the pain. When i am medicated they aren’t that bad, but still electric shocks.

I also have ATN, so i know both are hell. Good luck. I hope you find good drs too.

Tetiana, I realize your post was almost a month ago but please take Jeff’s advice and Annie6’s advice. My story almost like yours…however back when my TN symptoms started there was no such thing as internet or dr google so I was just misdiagnosed repeatedly and nothing I could do about it so I just suffered. My only daughter was just 2 yrs old at the time & I started with other symptoms of my disease when she was approx 1 yr old so I completely understand how difficult it must be for you especially if your baby is an infant. This monster caused me to miss out on a lot of life’s joy with my daughter over the years since my disease symptoms started back in 1991 and teeth pain started in 1992. I was first diagnosed with sinus infections since had pain in all upper teeth and face, then with TMJ, then tension headaches, then told had to have orthodontic braces as an adult (which I did)…etc. etc. Then fibromyalgia, then cervical deg. disc disease, etc. etc. NONE OF THESE WERE THE CAUSE OF MY FACIAL OR TEETH PAIN. Since I have many autoimmune disease symptoms and have had numerous diagnosis over past 25 years I won’t go into it all but since advent of internet and due to being forced to become an educated “professional” patient over the years who studies the same medical journals the doctors are supposed to be reading and applying, I have finally found my way to the proper diagnosis just in the past month. I took me literally 100’s of different specialists, thousands of $$$, loss of my career, a lot of determination, endurance and tenacity before finally getting to that 49 years of age. It has definitely taken its toll on our family both financially and emotionally to the point that my husband and I both have $0 retirement, $0 savings in our 50’s, and no longer own our own home since being forced to sell the beautiful one we built with our own hands in 1995 before I got super sick…all after a lifetime of being VERY hardworking individuals who do “whatever it takes.” We lived in Utah for 22 years where we built that custom home & raised our daughter but recently sold it as we could no longer afford owning it along with medical expenses and huge health insurance premiums and we moved back to our hometown in San Diego Calif. area. In April 2015 I began having very severe TN attacks with eye pain (but eye pain started originally in 2009 & dr’s ignored me) that would stop me in my tracks, couldn’t speak for few minutes, etc. just like you describe. Thus, I have been seeing specialists in San Diego for over 2 years and had to start over twice because the even at 2 of the most prominent medical facilities there I was still misdiagnosed by numerous specialists who were specialists within specialties in specific areas of medicine but still didn’t get it correct. I was finally diagnosed with Sjogren’s Syndrome (SS) like Annie6 which is an autoimmune disease by a Rheum and two Neurologists (one who specializes in facial pain disorders, TN, ATN, & headaches & migraine and another who specializes in neuropathy because I also already had a diagnosis of bodywide neuropathy) (each neurologist is at different facilities but both agree on SS which is causing neuropathy). Both neurologists and the Rheum agree I have TN (trigeminal neuropathy…not neuralgia) caused by autoimmune neuropathy from Sjogren’s syndrome with neurologic complications. The SS has also caused myelopathy (damage to my spinal cord…also misdiagnosed for MANY years thus worse damage because my SS autoimmune disease was not treated properly since was misdiagnosed as fibromyalgia and thus dr’s could have possibly prevented permanent spinal cord damage!) I also have damage to other cranial nerves originally misdiagnosed as “glossopharyngeal neuralgia” and “occipital neuralgia” which are now diagnosed as neuropathies not neuralgias. The nerve damage is also affecting my inner ears causing spasms of inner ear muscles and vertigo. Repeatedly over the years, I was diagnosed by dr’s as having somataform disorder, “dr shopping”, or told to my face it was “all in my head” or “I just worry too much about my health,” etc. etc. I had to start asking for EVERY chart note from EVERY dr appt to make sure a dr didn’t say these comments in my chart and I suggest you do the same! Especially if you have had no choice but to see many different dr’s. Even though dr’s could see by my list of MANY different medical conditions that all required DIFFERENT SPECIALISTS they would still make these comments in notes or to my face about seeing too many drs or dr shopping etc when I had no choice but to see all these drs because the problems I have are all so complex a primary MD looks at my history and freaks and then asks me to explain the medical jargon to him/her! Then they write a referral to a specialist! I really hope my reply does not scare you but motivated you to be your own advocate and don’t believe a dentist’s diagnosis when it comes to a MEDICAL problem, get 2nd and 3rd opinions from REPUTABLE specialists who specialize in TN, facial pain, neuropathy, autoimmune disease which include Rheumatologist and neurologist. Never let a TN neurosurgeon diagnose you purely off of a special TN MRI result showing compression of TN near brainstem either. One of the first TN specialists I saw recently was a TN neurosurgeon who has done it for 40 yrs. He misdiagnosed cause of my TN as just from compression because I had a positive TN MRI showing compression and said I need an MVD and even ordered the MVD. Then I questioned him how it could be the ONLY cause of my symptoms when I have TN symptoms on BOTH sides of my face but that the left side where the compression is just is the worst side and have worse attacks on left. Also asked him why I have spasms in my face that can been seen and muscle weakness in my mouth and jaw and burning mouth. Then he finally said he didn’t know what was causing all that and referred me to NEUROLOGY for a workup. This same special TN NEUROSURGEON said DO NOT HAVE ANY DENTAL WORK DONE except a routine cleaning for now due to the TN symptoms. He also said if go for a cleaning take extra gabapentin and other meds before the appointment to help prevent attack. I asked about this because I am overdue for a cleaning & I need a crown on a tooth completely unrelated to my TN pain but knew just touching my mouth could be a nightmare. I started having numbness in my face, mouth, etc. in 2009…no diagnosis by many neurologists seen. I started having stabbing eye pain left eye on and off with headache…no diagnosis by many drs. It is highly possible to have a real dental problem at the same time you have TN or ATN especially if your TN or ATN has been going on for years. This is very difficult to sort out so requires 2nd opinion from dentists too so make sure really need repair to a bad tooth etc. but that does not take place of seeing a NEUROLOGIST who specializes in facial pain disorders, TN, ATN, etc. If your doctors don’t know where to refer you for this & don’t understand how to treat you for TN or ATN, then you will need to do what I did and hunt down a TN Neurologist yourself then present the contact info to your primary care requesting a referral. They usually won’t make an appt for you until they receive your medical records that show documentations of TN or ATN symptoms so these must be sent to specialist with the referral. If you have other symptoms/other medical problems which suggest autoimmune disease or have already been diagnosed with any type of neuropathy then definitely see a Rheumatologist who specializes in autoimmune diseases and SSS and a TN Neurologist. I really hope this helps you navigate things and get the appropriate medical help you deserve. You need proper treatment so you can function and so you can enjoy your baby and if autoimmune disease it needs treatment too (first rule in neuropathy treatment is any type of neuropathy diagnosed then the CAUSE needs to be diagnosed not just treat the pain of the neuropathy). There are some people who never receive a diagnosis for the cause of their neuropathy and it is called “idiopathic.” However, if you have BILATERAL TN symptoms this is a RED FLAG that the cause is autoimmune neuropathy! Most common diseases to cause this in order most common first are MS, SS, Lyme, etc. Please don’t let this scare you either. I was misdiagnosed several times as possible MS because SS with neurologic complications like what I have mimic MS symptoms. Mainstay of TN & ATN pain if its neuralgia or neuropathy is carbamazepine, or gabapentin, or other anti-seizure meds and baclofen (anti-spasticity/muscle relaxant) and some pain meds like tramadol, cymbalta, SSRI anti-depressants. Sounds like you are young so althought it isn’t easy to fight this monster you likely can get to the bottom of this and get proper diagnosis IF YOU SEE THE CORRECT DRS and don’t waste time or money seeing anyone but the specialists within the specialty. Feel free to contact me thru PM here if that’s possible. I am not too familiar with this site. I am caregiver right now for my 76 yr old mother in law who just had surgery and I am in severe pain from TN, bodywide neuropathy pain, constant headache, severe fatigue, etc. so I know how you feel trying to take care of your baby. So sorry you are going through this and feel free to contact me. Christina

Forgot to mention also since I was already taking gabapentin to treat bodywide neuropathy pain with my TN attacks got much more severe last year, drs slowly increased my dose until it was effective for the TN pain. So now I am taking 800 mg every 4 hours! At same time every 4 hrs I must drink cup of tea with panax ginseng powder capsules (approx 250 mg twice per day) so that I can stay awake and function…I don’t take ginseng past approx 2 pm and stop all tea by 5pm so that no insomnia. I also take 100 mg zonisamide (anti-seizure) which I was already on for migraine w/aura prevention but can help TN too…10 mg Baclofen every 4 hrs is prescribed for TN but I usually only take it 2 or 3 times per day but especially at bedtime, Valium 10 mg twice per day (muscle relaxant, anti-anxiety, and treats vertigo & inner ear spasms), Tramadol 100 mg 3 x per day (approx every 5 or 6 hrs…helps neuropathic pain better than some other short acting pain meds like percocet, hydrocodone w/acetaminophen, etc.), Cymbalta 60 mg 2 x per day (neuropathy pain & depression), Oxycontin 10 mg EXTENDED RELEASE (I was already on this due to many different types of chronic pain conditions so not sure how much is helps TN pain), lidocaine 4% topical solution used intranasal on cotton swab applied inside upper nostril sinus area to numb facial nerves for a few hours (can also be applied to skin on face where most sensitive or painful & causes TN attacks if touched). I have found that not even 2 different pain management specialists I have seen recently understand how to treat TN pain properly and they defer all advice on this to my Neurologist and Rheumatologist and don’t want to write the RX’s for the anti-seizure meds but will write the RX’s for the pain meds and baclofen. Thus, when seeing Neuro & Rheum have a very frank discussion about who will be prescribing ALL your meds and if you are referred to pain mgmnt do the same with them. Maybe even ask them to write a list in chart notes with comment of which ones they agree to take care of and which ones they want your other specialists to handle and then fax the notes to the other dr to avoid the problems I have experienced with drs “passing the buck” and leaving me hanging in the middle with no help at times. Annie mentioned “pain in the jaw can be cripping” which made me think of the ignorant comments I get from some people who say “Oh I am sorry your jaw hurts” like you have TMJ or a toothache…even a CHARGE NURSE who has been doing that job for 25 yrs said that after I told her my diagnosis and she still didn’t get it!…must just laugh at them and realize there are so many complex medical conditions that can affect humans there is no way one specialist can no about them all let alone a nurse and that is why there are now specialists within specialties (or experts in their field of medicine).

I want to thank you for your responses! And this site was very helpful! So far I still haven’t been diagnosed with anything. The pain just stopped, as it did year ago. Combination of warm compresses, AC off, sleeping 2 days straight while on muscle relaxer, and takin antibiotics and painkiller naproxen. One of those might helped or just coincidence…
Hopefully it won’t come back.


Sorry I just now saw your email! You are so sweet to send a personal email. Unfortunately, I have been dealing with the TN battle along with autoimmune disease and have not had much time to check email since I am seeing 9 specialist physicians at this point. It doesn’t help any that this particular email is really really full of junk to wade through and I need to open a new account…lol. I am sooo happy for you that your facial pain went away and hope you are still doing well. Will pray it does not ever come back!


Christina Hurt