For those with TN2/ATN, did you find that the area affected got more widespread over time? If you do have lancinating pain I would still be interested in your answers as I am in med school and likely going into neurology or internal medicine and would be interested to help others when I get to that point.
I am still waiting on a diagnosis as I have been referred to a neurosurgeon with specialty in facial pain finally (OHSU questionnaire tells me TN2). My neurologist calls it neuropathic pain but codes for it with atypical facial pain, and I never had any sort of facial trauma to cause it so neuropathic pain for no reason is unlikely in my opinion. I have had complete pain relief with ENT performing lidocaine and dexamethasone injections twice in the last month to the infraorbital nerve area under my eye, but it only lasts 2 days and then comes back which from my understanding rules out PIFP. I had relief from tricyclics but those stopped working. Depakote was good for about a month and then pain starting coming back. Had great results from lyrica, gabapentin, and especially topamax completed cleared the pain - but all horrible side effects I couldn’t tolerate.
It started as deep burning sensation along the side of my nose and cheek for the first 2 years or so but it has recently become more widespread but contained within V2 distribution, as I can feel it deep below my eye and starting to get abnormal sensations along the back of my teeth on the same side, almost feels like I’m salivating more but I don’t think I actually am. I think its just more of increased sensation. Headaches below my eye are definitely getting worse over time as well.
From everything I have read, TN2/ATN usually progressively gets worse and resistant to medication - but for those of you that have it, what does that mean? Does the severity get worse? Does the area affected become more widespread? Both?
I have long periods of no pain. Mine started seven years ago after dental surgery and lasted a year. I was suicidal. I have since had short term flare ups (6 weeks or so) down to breaking a tooth or a root canal etc. However the recent flare is scary because as well as in the “usual” places it is mainly in my ear! It feels like someone has a lit match being held against certain points in my ear. But they move. Also just outside my ear to the front where I believe the trigeminal nerve starts.
As before it shoots down my arm and sometimes I have pangs in my instep and various other odd places on the same side. Right now it’s like someone is pushing a cotton bud against the inside of my ear. If I use capcaisin cream it burns only in the area the pain is (I have experimented by using it on the other ear and feel nothing)
This flare started believe it or not when a masseuse pushed hard on my temples for five seconds after a lovely massage. That was seven weeks ago. I had forgotten to tell her to avoid my temple area as I usually do even with hairdressers.
So so cross and the pain is unpredictable, sometimes unbelievable in strength (8/10) and frightening. This time I am still eating (seven years ago I lost over a stone) as I know what it is but how on earth can something so painful in my ear be brought on by a pressure on my temple .
I take Lyrica (100mg a day) and Nortriptyline (25mg)
I can’t take anymore Lyrica as it makes me lose my short term memory. I leave without my passport to go to the airport, I don’t recognise where I am driving etc
Nor makes me sleep. May have to up that.
I have also had severe migraines for thirty years and can have the AFP and a migraine together in exactly the same place. I will take sumatriptan and the migraine part goes away.
it doesn’t have to be facial trauma, as I’m sure you know the trigeminal nerve cups the side of your head and runs from the mid-line of your nose all the way around to your brain stem, trauma could be a hit on the head, falling backwards and hitting the back of your head, swelling from migraines internally, even the way the interior structures of your veins are growing around the nerve… it can also be loss of the protect sheath around the nerve for any number of reasons… this is always a reason for pain
the standard medication (at least in USA) for TN/ATN is Trileptal (Oxcarbazepine), I’ve even been told that if you take and get no response (even a slight response counts) then you don’t have TN/ATN. I don’t see that listed as one of the meds you’ve attempted. Neither Depakote nor Topamax are considered treatments for TN/ATN although since they’re in the same category as Trileptal it’s not surprising you had limited success with them, I suggest trying Trileptal. You mentioned gabapentin working for awhile, be aware gabapentin has a unique feature in terms of medication, you can actually miss your personal optimal dosing of it and have decreased positive outcomes. Let’s say you have some success at 100mg so you decide to up it 200mg, at 200mg you actually have less success then you had at 100mg, this may not be because it’s not working any longer, it may be because your personal optimal dose was 150mg and you overshot it. You must tritate up low and slow on gabapentin. You may want to try it again at lesser increases and see what happens.
You state lidocaine injection worked somewhat. You may want to try the lidocaine patch. Cut it into strips and place it along the nerve branch that’s firing. It won’t be an immediate response but rather something like a calming response over time. You can get 4% patch OTC as SalonPas, you can get a Rx 5% strength from your doctor. Because you’re only using a strip and the directions for use are based on using three full patches as a time you can leave it on much longer than the 12 hours on/12 hours off directions.
TN/ATN can and usually will affect all branches of the nerve. The pain will move around the nerve depending on what’s triggering the reaction. It’s very rare to have TN/ATN on both side as it’s two different nerves, but it does happen. The majority of people will have problems on one side and it will be throughout the nerve branch.
It will get worse over time. There is no cure. You may experience remission but it never goes away.
Also Trout, you make no mention of having had an MRI. This is a critical step. You must have a MRI to rule out things like tumors and to check for incorrect vein growth putting pressure on the nerve.
I do have a history of concussions, my last one approximately 2 months prior to the onset of the pain. So that is definitely interesting.
I requested oxcarbazepine from my neurologist when I first saw him and he was keen on prescribing depakote. After starting the depakote at 1000mg, I had horrible nausea and vomiting and called his office requesting oxcarbazepine again, and instead he insisted that I continue with the depakote at 500mg. The depakote worked for a month or so but then stopped working and he kept pushing me to increase the dose back to 1000mg despite continuous nausea since starting it. When I was trying the gabapentin, lyrica etc it was with my primary care physician in Canada who was open to trying anything, but I didn’t suspect TN at the time. I did have great pain relief from the Gabapentin and the Lyrica, but Gabapentin gave me peripheral edema and the Lyrica made me so dizzy I felt drunk and couldn’t work or drive, and those were starting at 300mg/75mg respectively. I may ask about trying one of them again at a lower dose, as you make an interesting point although the neurologist doesn’t seem too open to suggestions. He did want to try botox however he kept talking about migraines when he was telling me about it and using the same protocol, which would have cost me 6-1200 dollars which I didn’t want to pay but am considering now that the pain is getting worse.
I will try a lidocaine patch tonight and see how that works!
I indeed have not had an MRI - neurologist felt it was not necessary. So we will see what the facial pain specialist wants to do. Especially with the constant pain progressively getting worse since 27 (I am now 30).
I’m completely against botox for TN, and for the majority of migraines for that matter. Botox works by freezing your muscles - which has nothing to do with the TN nerve branch. It also works only on tension-type headaches, not classic migraines. I say this as person who has chronic, neurologically complicated migraines for 30+ years.
Granted, I’m not medical professional but I have had ATN for 15 years. I have a feeling your issues are concussion related. Concussion syndrome can cause headaches which are often mistaken for migraines. If your concussion included whiplash and your headaches stem from the back of your neck around you may want to research botox for that, but not for TN/ATN. Concussion syndrome can also cause a host of other problem, facial pain among them. You may want to do some research about concussions. There’s been a ton of new info the last decade.
Since you did well on gabapentin in terms of pain control I suggest trying it again at a much lower dose. 10 years ago the standard dosing for gabapentin was 100mg 1x a day, titrating up by 50 or 100mg every two weeks until therapeutic levels were reached. In the past 5 years or so everyone seems to be prescribed 300mg 3x a day immediately. That’s a dose the has shown helpful for fibro but not much else. As an example, I started on gabapentin 100mg 1x and stablized on 100mg 2x for about 3 years, then over the next 3 years I gradually tinkered with the dose and I now take 2 100mg 2x daily and have 95% pain control and have for about 2 years now. Every doctor who sees that dose tells me it’s sub-therapeutic but it’s not, it works for me.
That’s the biggest trick to this, finding what works for YOU. Take the advice of doctors and pharm and experienced people in this community but then make your own decisions and develop a therapy that works for you. Facial pain is a rare issue that is largely not understood, you’re going to have make your own way to controlling your pain.
I agree with Azurelle, Botox does not work for ATN. Trust me I tried two horrible rounds of it. I do suffer from migraines as well and the Botox did nothing for either pain. Azurelle also has a great point when she says find what works for you. Definitely customize your medication dosages and combinations to meet your needs. You asked if the area of pain increases over time, mine has. My pain started above my eyebrow. I now have it in my temple and occasionally my nose, ears, and teeth.
Carrie, I’ve had ATN make my teeth feel funny as well – not only painful but a sensation of being loose. Well, here I am about 15 years in and my teeth have shifted to the point that I need braces.
Is it clincially provent that TN/ATN impacts your teeth? Nope. But there are way too many of us here that have issues with teeth and bite to completely ignore the possibiliies. Since you’re noting more and more issues with teeth you may want to have your teeth reviewed sooner rather than later.
Ya I wasn’t too thrilled about Botox either, especially considering the localization of my pain and at 1200 dollars a pop after insurance. Thank you both for the input.
I appreciate the advice azurelle, I definitely need to be my own advocate. Just for example my neuro prescribed topamax at 50mg/day starting dose which completely eliminated all of my pain but also completely messed up my cognitive function. I found the same pain relief biting off a small piece of the tablet, probably 5mg, although I won’t continue as I still can’t function on that drug even at those I feel very dissociated.
I have signed up for an app called Curable, and read some reviews on the facebook group for ATN, some really good, some no effect, but we will see. Basically it is a pain science app designed to change your thought process and change the way your brain perceives pain. I will post about it after a month or two and see if it helps. I have also ordered a supplement, that previously required an Rx, called PEA palmitoylethanolamide, which shows some evidence for neuropathic pain by decreasing inflammation through various pathways. Again, I will update with results.
