Please any atypicals only have you had surgeries or even invasive things done that have helped you?
I have not had any surgeries yet, the few doctors I have talked to about it wouldn't even consider it until I had run through all of the medication options. I hope that hearing about someone in the same horrible boat helps , even a tiny bit. The only mediation that has helped without giving me terrible side effects is nortriptyline. I highly recommend it.
I have been in nearly constant ATN pain (it has only gone away with a few medications) since November 2014, and I am currently 25. I know the feeling of not wanting to live with this deep, unexplainable pain constantly dulling your mind and making it impossible to sleep. Before I found some relief I felt like I was crazy, not going, but fully unhinged insane. My nerve has been literally torturing me for over a year, and I have had to deal with the depression and PTSD that that it has caused me. I am sure you can understand! Thinking about my future terrifies me, because there are so many things I wanted to do that feel impossible now.
Don't get me started on doctors, I have seen a multitude, and yet it was my GP making internet searches in the exam room who FINALLY Diagnosed me and it was her work, on google again, that decided to put me on the nortriptyline. I have not yet found a Neurologist who will treat me as an ATN patient vs a TN patient. Most of them haven't known about ATN, let alone how to treat it!
Even with my medications my pain is not gone, I have good days where it is almost gone, and I have bad days like today where it is almost back to what it was off the drugs. I wish I had a more perfect answer for you, and I wish you every success!
Thank you. You as well
With someone that has been "diagnosed" with ATN and central sensitization, I will give you my personal experiences with invasive and non-invasive interventions.
First with the medications. I have been on nor-tryptaline, amitryptaline, lyrica, baclofen, flexoril, Cymbalta, celexa, carbemazopene (I suck at spelling that...I should just say Tegretol), and Neurtontin just to name a few. I was taking what I was told was the maximum dose of Neurontin (3600 mgs daily) for starting to see any kind of relief (if you don't notice anything then the higher doses likely won't either). Not only did it not help I honestly couldn't tell if/when I was taking it. No side effects and no help. At least it didn't hurt, I guess.
Other non-invasive therapies have included TMJ splints (I've had 4 of them, all made differently), acupuncture (by Americans and China men no less haha), chiropractic care, mykinesis, vitamin therpy, and diet alteration. I can honestly say that I didn't feel the slightest bit of relief from any of them. That's not exactly true I guess, as the cranio-cervical chiro I saw would help with my neck and shoulders....for that day. Then the next they would be right back where they were before.
As far as the invasive stuff goes I would really think twice about most of it. I didn't experience any relief with any of the nerve blocks I had done, although they didn't hurt anything either. Two of the three numbed me up good, but my head was still in it's constant vice-like state. I've had Botox on 2 separate occasions. The first time I had 2 injections, one near the corner of the upper lip and the other in my cheek. It definitely had an affect...on my smile. :( It didn't help at all with any of the pain/problems. The 2nd time I had it done more extensively. I had injections around my skull, near my jaw, on my face and in my neck. I think it helped a little around the occipital/cranial region but didn't do much for me in my face. Oh, my forehead looked really funny when I frowned (they injected me in the center of the forehead so I looked like a Klingon).
My current state of health really started in 2001 after I had my wisdom teeth extracted. I had complications in my upper left socket, started with a mass formation 2 weeks after surgery. It hurt like a bitch, but it took me a week to get them to remove it. After the removal the pain was gone, and a strange but successful 3 week healing process ensued. I felt the best I felt in years. Then I went into a steam room sauna and had the mass re-appear. Unfortunately the surgeon wouldn't remove the mass and I got the run-around from other surgeons, with many saying that it was "pink and healthy tissue". It took until the following year, with my entire left maxillary area in complete pain and rigidity, to get somebody to remove the mass again. Unlike the first time where I seemingly "healed' in 3 weeks, I didn't "heal" at all after the first. Sure the surgical site healed but I was left with the same pain and symptoms as before the removal.
Why am I telling you this? Because it leads to the more invasive procedures I had done. From the get go I wanted the mass AND the bone that forms (between the oral and sinus cavities after typical tooth removal) removed as I felt the entire site was compromised. Finally in 2008 I found a doctor that agreed to check for a bone scar in that area. The bone was normal and for a week my symptoms improved somewhat. Then the area started to hurt immensely and that's when I thought the teeth in front of the cavity may be to blame. I had one tooth removed and a root canal performed on another. Eventually the root canaled tooth developed a cyst, and I saw a dentist in Colorado that wanted to remove the tooth AND the surrounding bone. In his opininion I had turned "septic". I thought it made sense (with my symptoms and weird circumstances) so I agreed. Within 2-3 weeks of the surgery I developed an oral-antral fisula, which is medical speak for a hole/cavity forming between the oral mucosa and the sinus. I developed a bad sinus infection and had sinus surgery done, then had the fistula repaired by an oral surgeon. Even though bone was removed it STILL wasn't quite in the area that I initially wanted done (only around the decayed tooth). About a year later I had a minimal procedure done at a local teaching institution. It was minimal in that he didnt' really do what was agreed upon, thereby irritating me and losing my trust. I've also gone to Mexico (twice), and recently had a gasserion ganglion balloon compression with glycerol performed. I was immediately numb, especially on my jaw/chin (where I didn't have a problem before), but I was royally screwed up after this one. Much of the tightness and rigidity was restricted to the maxilla region, but had now migrated to the mandible and TMJ area. I couldn't even get my teeth to touch when biting (left side wouldnt' make contact). I had another splint made (4000) and now my bite is better, but the pain is still there. The doctor that performed the surgery recommends the DREZ or the MCS given my symptomology and history but I am less than optimistic about doing it. I haven't done or tried ANYTHING that has given me relief, and the last surgery made it worse (or impaired me from controlling the muscles/sensations I could before). How can I commit to something that's more invasive? The MCS isn't covered by my insurance provider (Cigna).
Long story short is I would try every non-invasive measure you can before progressing to the more invasive alternatives. If I could go back I would have never had the bone scar surgery done and this would have likely meant no subsequent surgeries. Unfortunately complicated and un-traditional cases such as mine (and maybe yours) make it difficult to get correct diagnoses and treatment. Given the mass and the physical symptoms (muscles popping out, impaired nasal breathing) I'm still not sure my diagnoses is correct. Right now I am not sure of anything, to be honest.
I hope this helped if you have some options on the table. If you ever need to chat/talk let me know as finding doctors/help can be really hard, especially if you live in a "bad area" (where healthcare sucks :)).
Hi itwouldntbemakebelieve! I am interested in the fact that you have found nortripyline useful with no side effects.I have been on this medication at a low dose and I don’t think I gave it long enough to work.How long did it take for it to bring relief to you and at what dosage? I do remember I put on some weight with it but not overly much.Oh I had to take it in the morning because if I took it at night it kept me awake.I am thinking of going on it once more for my ATN pain.Thanks, Eileen
Hi Eileen,
I started taking it in August 2015. I was on Oxcarbazipiene (sorry for bad spelling...) at a very low dose of 75mg twice a day, because any more than that made me too dizzy to walk. So the Oxcarb was barley taking the edge off the pain, just enough for me to sleep some. I overlapped the 2 drugs for 2 weeks, and I noticed improvements starting the end of the first week. I started on 25mg at night, and in late September I upped it to 25mg twice a day. I have never had total pain relief from it, but on most days it gets it "muted" to a level I can live with. Equal to a light sinus headache I guess. I still get deep pains in my teeth and gums if I eat anything hotter or colder than luke-warm, I am hoping to see about increasing again when I get a good doctor, I am currently between Neurologists.
So far I have reacted to all of the medications, getting relief and/or NASTY side effects at way lower doses than average, it keeps confusing my doctors.The only notable side effect of the Nortriptyline, for me is Severely Dry Mouth, so I talked to my dentist about it and got some gel to put in my mouth when I sleep and I use this brand of candy/mints that's called "Ice Chips" they come in all kinds of flavors and can be ordered online, and they are supposed to be good for your teeth.
Hope that helps,
Erika
Thanks Erika! Are you still on the Oxcarbazepine as well as the nortripyline or just the nortripyline?Eileen
Right now I am just on the Nortriptyline. After 6 months of being dizzy I was desperate to get off Oxcarb. Not desperate enough to go back to full, untreated pain though! They tried me on another drug in November, Balfaltcum, maybe, something like that, I don't remember, I just know it gave me excruciating leg pains, so I dropped back to just the Nortrip. Like I said, i still have regular pain, and I am hoping to make a change when I find a doctor who might actually know something about this condition.
Thanks again Erika,such a quick reply! Are you in the UK? At the moment I am only on 25 mg lyrica and .75 mg of clonazepam.I was on nortripyline for three months building up to 50 mg where I had better pain relief.My doctor didn’t want me to go higher and at that dosage I was getting side effects .However I feel now that I didn’t give myself long enough on this medication as have read it can take much longer to sometimes kick in! Have a good day! Eileen
Zac F :/ i got chills reading all that :((( so hard to read.
sorry if my pronouning in english isn't that good.
i'm suffering for 5 years. after a few dental treatments (regular fillings). been to 100's of doctors.. some days went to 4 doctors a day. took neurological meds (now on cymbalta)... many many doctors (i have one doctor today, one tommorrow..) done invsive procedures... radio frequency.. injections on pain clinics.. etc.
i think other there is some mm.. imbalnce in our bodyies... we should listen to it. for example - the night quard - i used to have mont's - i remember i could close my mouth cause when my theeth hurt so much !!! so trying not to close the mouth caused me to "ecercise more muscles to try to keep it open - so it cause other problems etc.
i'm trying now to think to listen to my body to help balance it back. maybe to balance the mouth so there will be NO effort to close it etc. i did pull 3 theeth. 2 of them wisdoms theeth.. it didn't solve the problem but it helped a bit (i couldn't knocked on those theeth).
all the dental procedures you have done sound horrible.. i , here, in my contry looked to chiro doctors than maybe remove bone in jaw etc. but after hearing cases like yours i think i would touch that.
again - sorry for my english if it's not that clear.
Zac F said:
With someone that has been "diagnosed" with ATN and central sensitization, I will give you my personal experiences with invasive and non-invasive interventions.
First with the medications. I have been on nor-tryptaline, amitryptaline, lyrica, baclofen, flexoril, Cymbalta, celexa, carbemazopene (I suck at spelling that...I should just say Tegretol), and Neurtontin just to name a few. I was taking what I was told was the maximum dose of Neurontin (3600 mgs daily) for starting to see any kind of relief (if you don't notice anything then the higher doses likely won't either). Not only did it not help I honestly couldn't tell if/when I was taking it. No side effects and no help. At least it didn't hurt, I guess.
Other non-invasive therapies have included TMJ splints (I've had 4 of them, all made differently), acupuncture (by Americans and China men no less haha), chiropractic care, mykinesis, vitamin therpy, and diet alteration. I can honestly say that I didn't feel the slightest bit of relief from any of them. That's not exactly true I guess, as the cranio-cervical chiro I saw would help with my neck and shoulders....for that day. Then the next they would be right back where they were before.
As far as the invasive stuff goes I would really think twice about most of it. I didn't experience any relief with any of the nerve blocks I had done, although they didn't hurt anything either. Two of the three numbed me up good, but my head was still in it's constant vice-like state. I've had Botox on 2 separate occasions. The first time I had 2 injections, one near the corner of the upper lip and the other in my cheek. It definitely had an affect...on my smile. :( It didn't help at all with any of the pain/problems. The 2nd time I had it done more extensively. I had injections around my skull, near my jaw, on my face and in my neck. I think it helped a little around the occipital/cranial region but didn't do much for me in my face. Oh, my forehead looked really funny when I frowned (they injected me in the center of the forehead so I looked like a Klingon).
My current state of health really started in 2001 after I had my wisdom teeth extracted. I had complications in my upper left socket, started with a mass formation 2 weeks after surgery. It hurt like a bitch, but it took me a week to get them to remove it. After the removal the pain was gone, and a strange but successful 3 week healing process ensued. I felt the best I felt in years. Then I went into a steam room sauna and had the mass re-appear. Unfortunately the surgeon wouldn't remove the mass and I got the run-around from other surgeons, with many saying that it was "pink and healthy tissue". It took until the following year, with my entire left maxillary area in complete pain and rigidity, to get somebody to remove the mass again. Unlike the first time where I seemingly "healed' in 3 weeks, I didn't "heal" at all after the first. Sure the surgical site healed but I was left with the same pain and symptoms as before the removal.
Why am I telling you this? Because it leads to the more invasive procedures I had done. From the get go I wanted the mass AND the bone that forms (between the oral and sinus cavities after typical tooth removal) removed as I felt the entire site was compromised. Finally in 2008 I found a doctor that agreed to check for a bone scar in that area. The bone was normal and for a week my symptoms improved somewhat. Then the area started to hurt immensely and that's when I thought the teeth in front of the cavity may be to blame. I had one tooth removed and a root canal performed on another. Eventually the root canaled tooth developed a cyst, and I saw a dentist in Colorado that wanted to remove the tooth AND the surrounding bone. In his opininion I had turned "septic". I thought it made sense (with my symptoms and weird circumstances) so I agreed. Within 2-3 weeks of the surgery I developed an oral-antral fisula, which is medical speak for a hole/cavity forming between the oral mucosa and the sinus. I developed a bad sinus infection and had sinus surgery done, then had the fistula repaired by an oral surgeon. Even though bone was removed it STILL wasn't quite in the area that I initially wanted done (only around the decayed tooth). About a year later I had a minimal procedure done at a local teaching institution. It was minimal in that he didnt' really do what was agreed upon, thereby irritating me and losing my trust. I've also gone to Mexico (twice), and recently had a gasserion ganglion balloon compression with glycerol performed. I was immediately numb, especially on my jaw/chin (where I didn't have a problem before), but I was royally screwed up after this one. Much of the tightness and rigidity was restricted to the maxilla region, but had now migrated to the mandible and TMJ area. I couldn't even get my teeth to touch when biting (left side wouldnt' make contact). I had another splint made (4000) and now my bite is better, but the pain is still there. The doctor that performed the surgery recommends the DREZ or the MCS given my symptomology and history but I am less than optimistic about doing it. I haven't done or tried ANYTHING that has given me relief, and the last surgery made it worse (or impaired me from controlling the muscles/sensations I could before). How can I commit to something that's more invasive? The MCS isn't covered by my insurance provider (Cigna).
Long story short is I would try every non-invasive measure you can before progressing to the more invasive alternatives. If I could go back I would have never had the bone scar surgery done and this would have likely meant no subsequent surgeries. Unfortunately complicated and un-traditional cases such as mine (and maybe yours) make it difficult to get correct diagnoses and treatment. Given the mass and the physical symptoms (muscles popping out, impaired nasal breathing) I'm still not sure my diagnoses is correct. Right now I am not sure of anything, to be honest.
I hope this helped if you have some options on the table. If you ever need to chat/talk let me know as finding doctors/help can be really hard, especially if you live in a "bad area" (where healthcare sucks :)).
Goodmorining jennifer,I am so so sorry you are in so much pain. I will try to be quick,30 years ago I started having migrains then started having bad infection in my teeth,my teeth were cutout in 1993,6months later started tn1,10 years later started symptoms of tn2,turned more constant then not, then tmj,then gpn.The last 20 years has felt like I was given a life sentence in hell! The best thing for ME has been a cream called GALLIXA! Check out some of my discussions and other members about it. Just put Gallixa in the search bar.Hope you find your answer soon. Soft hugs,dawn