While it is agreed that the course of classic TN is one of gradual worsening, i was wondering if anyone knows of the case for TN2/ATN.
Is this also known to get worse over time? I have had ATN for a year and over this time the course of the disease has been very random. It disappeared for a while but now its back. It used to be more painful but now it is less painful but is there much more often.
Is it completely random or is it like NASDAQ, zigzaggy but overall with an increasing trend? (ignoring the last year of the stock market lol).
I have ATN. Bilateral in all three branches. I first got it 10 years ago for 1 year. It went away for 7 years and came back 3 years ago and has tortured me every since. I think it is really hard to say because each of us seems to be so different with our symptoms, locations and severity of pain.
Mine is all over the map. It comes and it goes. It moves around and surprises me with brand new forms of torture every few months. But for some people it seems to stay in one place. A common theme does seem to be the difficulty with controlling the pain over time with medication.
TN is a progressive disease and so far my experience has measured up to that. I am still waiting for it to just take a hike like it did last time.
I suffer ATN, bilateral in all three branches since 2006, looking back I reckon I suffered ATN from my early teens from age 12.
I blame dentistry, I had unnecessary dental work from an early age, this then lead to fillings, root canals, crowns etc. ATN would always start after dental work and last months, years after.
I am again going through a similar thing now, I bit on a hard cracker and now my front tooth will not stop aching. The pain/ache radiates towards the rear and travels down to the bottom row of teeth (refers).
My dentist and one maxillofacial consultant says there is nothing wrong with the tooth, 3 other dentists say the tooth is most probably dying, only time will tell (that I made need a root canal). The second maxillofacial reckons the tooth is still traumatised and says the tooth is not dead yet, he reckons it should recover (been 10 weeks already).
I blame dentistry for my pain, my dentist is blaming ATN is the reason for my pain (chicken & egg story).
If I hadn't of bitten down on a hard cracker, I wouldn't have this pain on my front tooth that I have now, My dentist disbelieves me, and I'm sure he is overlooking the real problem (that my tooth is damaged or is dying)
I know that mine is certainly all over the shop as well!! After coming and going for a decade and a half it came back as a period of TN that lasted a couple of years, vanished and has now been a constant ATN for the past couple of years. Not only that but as of a month or so ago it's now massively affecting the "good" side of my face. So I'd have to say for me at least it is definitely worse.
I've had ATN type 2, for three years and three months. It was bad in the first year as it got worse and worse. It took a while to settle. A few of the pain points have gone.
But it seems to have settled and doesn't move to other spots.
I have had atn for 8 years. I too believe mine started from dental work. Mine has come and gone over the years but just this past year moved to pain behind my eye that was pretty constant. I still fight this stuff and hate drugs so in March tried upper cervical. I have been mostly pain free but am not sure if this is a real deal cure or just quit hurting for a bit. Time will tell. Mine has gotten worse just this past year but for sure there have been rough times that have lasted for months but the pain at least goes away for awhile. Good luck and I hope your pain episodes are far and few between and is manageable for years to come.
Wow, I've just looked at a clip from (The Doctors) fixing the Atlas bone in the upper cervical. Is that what you had Gladus?
I,m tender up each side of the Atlas bone and when I was at acupuncture he deeply massaged my neck but each week my neck would be stiff and he wondered what I was doing. When I had done nothing. Plus I cant lie on the back of my head, there is a strange ache.
I doubt I can get the atlas bone realigned here but do know of a good chiropractor that I haven't seen yet.
My atlas and axis we terribly misaligned and in 3 appointments they have now been aligned for 9 weeks. Make sure if you go to an upper cervical chiropractor you go to a Nucca certified one. I have to admit my gut is telling me this is the answer to this. I found out about this in the facial pain newsletter. I am still hopeful and pain has been much decreased! I had been going to a regular chiropractor for months with no relief and my Nucca guy got to it in 3 visits. I would encourage you to try it. I am curious if you would get same results?!?
Oh my goodness that is so similar to me. I still have very little pain. There is a web site where you can get all kinds of information on Nucca chiropractic. johnsonspinalcare.com. There is even a section on facial pain. I can’t say enough about what a difference this has made for me. I have always had so much pain and now I really feel there is hope. The face pain started out in lower two branches and really got bad after dental work. The pain was boring non stop 24/7 for six months. I had pain in ear and then it moved up to behind my eye several months ago. I also have carpal tunnel. All of which they say is part of upper cervical misalignment. Let me know what you think of web site.
I have found a very good osteopath, but the Nucca certified chiropractor is in Auckland, a .5 or 6 hour flight which my husband wanted me to do, but for 2 weeks only and a few alignments. But now he has found a good Osteopath. And I must go with that ............Duh. I'm seeing him in 4 days.
Also I have finally convinced a doctor to let me have an x-ray but unfortunately she says it will not be standing or sitting upright. Grrr! I want to see if the Atlas bone is misaligned before going all that way to Auckland.
Hi Farmeress, usually if a Nucca chiropractor knows you have come a distance they will work with you. I have had some pain after the adjustment but after constant pain for months I can actually forget I have atn! I was so afraid “this stuff”. My name for tn was going to continue to get worse and I just couldn’t imagine that. Nucca dr explained that it takes nerves longest to heal so am patient but continue to have less pain each day. I pray this is the real deal. It was worth every penny to try and there were no drugs and a painless experience. I could not ever lay on my back because of pain and now I actually wake up at night on my back. Do you ever get relief from regular chiropractor? I would get some but was never able to get my back in alignment and pain would return fairly quickly.
Hi Farmeress, usually if a Nucca chiropractor knows you have come a distance they will work with you. I have had some pain after the adjustment but after constant pain for months I can actually forget I have atn! I was so afraid "this stuff". My name for tn was going to continue to get worse and I just couldn't imagine that. Nucca dr explained that it takes nerves longest to heal so am patient but continue to have less pain each day. I pray this is the real deal. It was worth every penny to try and there were no drugs and a painless experience. I could not ever lay on my back because of pain and now I actually wake up at night on my back. Do you ever get relief from regular chiropractor? I would get some but was never able to get my back in alignment and pain would return fairly quickly.
Hi Gladus,
I'm nearly emotional to find someone like me who cannot lie on the back of my head.
I understand now that if I get the atlas aligned to will still take some time for the pinched nerves (or whatever) to heal. I have a Bioptron healing light which will help once I get it fixed. If this is it for me and I finally believe it is. Also my original symptoms have not got any worse or moved as other TN people seem to have. What other symptoms did you have. I have mouth pain. dead, burning, strong pins and needles, like, with each pulse. And the top of my head but more pain, possibly pinching while sitting upright and in the car. But travel by trains and planes seem a lot easier than the car.
I was diagnosed with ATN about 5 years ago now. It took a good year to figure out what on earth was going on with my body, and I ended up figuring out that it was ATN and bringing my info to the doctor (oh they hate that). I would have to say though that unfortunately in my case it does get worse. I was just recently commenting to my mother that I needed to get back to the doctor to see what adjustments could be made because the medication wasn't keeping up with it at this time. I'm currently taking 800mg of Tegretol and 600 of Garbapentin, I have been told I can raise both of those, but the exhaustion side effect is starting to become a problem.
When I first started it was an awful tooth ache pain, since then it has pretty much taken over the left side of my face. There are definitely days that are better than others, and I still have flare ups, but they seem to be more often now a days, and with new ways of pain. My most recent fun time with ATN has been terrible pain IN my eye, not behind, but IN, it stings, burns, and then causes me to tear uncontrollably for about 3-5 minutes. My pain specialist says that it's "normal". Sigh.. I hate this new normal.
Thank you all for sharing your stories about the progression of ATN. Some very informative posts.
One thing that I am a little taken aback by, was the fact that many of the ATN patients are taking anticonvulsnts. As far as I have heard (totally not sure) only TCA medication works for ATN, rather than tegretol/gabapentin. Is this my misunderstanding?
As for myself, my ATN has surely been progressing but unfortunately I have gotten two/three instances of the type 1 lancinating pain in the last month. So maybe mine is developing to TN1? I also thought usually TN1 becomes TN2, rather than the opposite.
I'm having 100mg Amisulpride which seems to be a TCA medication.
I have read that opiates or Opioid's, (I'm not sure which but thought they were the same) are what we should use for
Type 2. Also what you said Gabapentin etc doesn't work for type 2. haach76 said:
hi there
Thank you all for sharing your stories about the progression of ATN. Some very informative posts.
One thing that I am a little taken aback by, was the fact that many of the ATN patients are taking anticonvulsnts. As far as I have heard (totally not sure) only TCA medication works for ATN, rather than tegretol/gabapentin. Is this my misunderstanding?
As for myself, my ATN has surely been progressing but unfortunately I have gotten two/three instances of the type 1 lancinating pain in the last month. So maybe mine is developing to TN1? I also thought usually TN1 becomes TN2, rather than the opposite.