Please help, as more time goes on I discovered almost with absolute certainity that I have Atypical TN not 'just' TN (doctor term of 'just')
Hi Prudence,
Yes, I have it, as do a lot of us on here. I encourage you to join the type II group, where you can get specific information relating to type II. Feel free to message me, if you want to vent.
I'm sorry you have it. It's not fun, that's for sure.
Beth
Hi,
I have it as well. Many, many do. Seems lots of Drs won't diagnose if it isn't classic Type 1.
Ask anything,
Jane
Wow, I didn’t know some doctors won’t diagnose unless it’s type I. That’s scary!
How do I join the the type ll group?
Thank you both for responding...sorry you have to deal with this too though.
ATN for 2.5 years and counting. I've noticed it's rare for a doctor to say atypical TN. My pain doctor refers to it as neuropathic TN, but whatever, it hurts like hell and it's a needle in a haystack to find a halfway decent doctor.
yep...and its treated like no big deal. I don't get alot of support from my family, so it makes it really hard. They just don't understand. Mine really acts up when I get emotional. I was however lucky to have a Dr. that diagnosed me the first time I went in with pain. Sorry you have any kind of TN. People don't understand what they can't see...I may have to join the type II group also. Take Care!
Yeah, at least after I had an MVD there was something for people to see....once the hair grew back it's been a nightmare dealing with doctors. My pain specialist has done absolutely nothing in 4 months other than rack up a ton of bills, he didn't actually change any medicine.....or try ANYTHING! He sent me to a shrink who swapped out cymbalta for effexor, but that was it. He didn't even reschedule at our last appointment........I dunno if that means find someone else or what but it's bs.
julesiam3 said:
yep...and its treated like no big deal. I don't get alot of support from my family, so it makes it really hard. They just don't understand. Mine really acts up when I get emotional. I was however lucky to have a Dr. that diagnosed me the first time I went in with pain. Sorry you have any kind of TN. People don't understand what they can't see...I may have to join the type II group also. Take Care!
I have ATN. While I have had a few bouts of intense/sharp and burning pains - mine is typically just a constant irritation and burning sensation on my face - mainly eyelid and cheekbone, or an incessant "tickling" feeling - I know that doesn't sound extreme, but it's almost like torture. Until I got the symptoms under control - the skin on my face was becoming raw from my constantly trying to stop the tickle. I used to be able to take Norco for when it got really active and painful - but ever since that actor dude died form an over dose my Doctor is hesitant to refill a prescription. I am now depending on Vodka to calm it down and get sleep. Sad really.
how about this twist. my neuro, rather than calling it atn or type 2, said i had (and I can't remember exact terminology) but something to the extent of multiple and lengthy attacks throughout the entire day making it seem continuous. my gp said, when I asked him about type 1/type 2 that I have TN but it is has atypical components (or something like that). They must not like to give the atn diagnosis for some reason.
I have Tn type2b . Which is what they call atypical Tn now apparently. Initially during my mvd a blood vessel was actually embedded in my Trigeminal nerve in six different places. My surgeon actually wrapped the whole nerve with the patch. I was in a kind of remission which means small episodes here and there. Last summer I came out. I am told the compression hasn’t moved and that my Trigeminal nerve is permanently damaged. Rhizolysis twice. Tons of meds . No understanding. And another rhizolysis in a week. I am constant in all three branches and also get the sporadic pains.
I get a burning tickle feeling down the back of my arm to my pinky/ring fingers, sometimes when clothing rubs my skin or vibrations like from a boat or riding in a small airplane. Before I got on Nortriptyline it was almost constant and made me squirm. It's terrible.
Right now I'm pumped up taking 40mg oxycontin, 150mg nortriptyline, 300mg effexor, and some percocets. But before I had the nortriptyline and an MVD I was disabled from eye pain. Moving it left or right still makes it water up but doesn't feel nearly as bad as it did. It used to feel like ice picks were through my eye and ear and sword fighting.
First neuro I went to diagnosed it as "Tolosa hunt syndrome" cause of the eye pain and inflammation in the cavernous sinus that showed on the MRI. Taking 100mg prednisone for 3 months was insane on my body, and the pain didn't go away. Eventually a second opinion gave me nortriptyline which immediately made a difference.
KSoz said:
I have ATN. While I have had a few bouts of intense/sharp and burning pains - mine is typically just a constant irritation and burning sensation on my face - mainly eyelid and cheekbone, or an incessant "tickling" feeling - I know that doesn't sound extreme, but it's almost like torture. Until I got the symptoms under control - the skin on my face was becoming raw from my constantly trying to stop the tickle. I used to be able to take Norco for when it got really active and painful - but ever since that actor dude died form an over dose my Doctor is hesitant to refill a prescription. I am now depending on Vodka to calm it down and get sleep. Sad really.
Hi Prudence,
I have atypical TN too. For me it was 17 months before I found a neurologist who knew and didn't downplay the pain I was in. Mine is burning, aching, crushing on right side of face with jolts of intense pain in my teeth and gums that moves around. No two days are ever the same. Don't give up searching for a supportive doctor, there are many out there that seem to be clueless about TN.
I have ATN and it is fairly constant aching, pinging, burning, and then flares of more intense pain that feels like someone sticking an ice pick from below my ear to my front teeth-like paralleling my jaw.....it's NOT FUN! I have some pain lately up into my cheek. I'm on Lyrica and it is helping so I have pain free hours at a time....
Hey so the lyrica helps with atypical pain? I might have to try it...I've got ice pick stabbing behind my eye and inside the jaw and across the cheek.
Turtlebug said:
I have ATN and it is fairly constant aching, pinging, burning, and then flares of more intense pain that feels like someone sticking an ice pick from below my ear to my front teeth-like paralleling my jaw.....it's NOT FUN! I have some pain lately up into my cheek. I'm on Lyrica and it is helping so I have pain free hours at a time....
Shindig- I started out on Tegretol, which did nothing except make me so loopy I felt it was unsafe for me to make my hour long commute to work, and all my co-workers knew I was loopy! Then I tried Lyrica....it would work for a week or so then kind of quit, so my neuro would up the dosage by 25mgs and give me two weeks. So far the 100mgs is working pretty well but when I do have a flare I use either Lortab or Tramadol to handle the pain....I cannot imagine the agony of the ice pick behind the eye.....
Hi Shindig,
I was on Lyrica at one point and it did help me at 150 mg/day. Then I guess it stopped working after about 6 months and I did not want to up my dose (it gave me night sweats, nightmares, I was tired etc.), so I decided to wean off instead. I had been on Neurontin before Lyrica and compared to Neurontin Lyrica was a real help despite the side-effects. As you may know I have ATN too and a lot of people get prescribed Lyrica for neuropathy/ATN. I remember Lyrica was rather costly, though, compared to other drugs in this group.
Oldriska
Shindig said:
Hey so the lyrica helps with atypical pain? I might have to try it...I've got ice pick stabbing behind my eye and inside the jaw and across the cheek.
Turtlebug said:I have ATN and it is fairly constant aching, pinging, burning, and then flares of more intense pain that feels like someone sticking an ice pick from below my ear to my front teeth-like paralleling my jaw.....it's NOT FUN! I have some pain lately up into my cheek. I'm on Lyrica and it is helping so I have pain free hours at a time....