Can someone have ATN and TN at the same time?

I am interested in finding out if anyone can have TN and ATN at the same time? My face burns constantly…sometimes is feels like a really bad sunburn and at other times it feel like someone is taking a blow torch to it. And then along with it I get electrical pains running to all my upper and lower teeth while the right side of my lips feel numb! The electrical shock waves will come every couple of hours. I have also noticed that the right side of my neck all the way down my right arm is burning. Is that part of TN? Can’t get a hold of my dr to ask these questions.

Dianna,

That's pretty much what I have. I started out typical or type I TN and over the last 8 years it has morphed into type II or ATN. (Stef is better with the correct terminology). Type II is characterized by more type II symptoms than type I but you can certainly have both - I do! At least that's how I understand it - and it did take me a long time to get my head around the distinctions.

If I am not on my meds or on the correct dose my face has constant fire-like burning. On top of that I get electrical shocks a few times a week. Talk with your Doc about changing meds / dosages. It certainly has helped with my constant symptoms. For me a change from Carbamezapine to Nortryptaline has solved that issue.

I don't have symptoms reaching down into my arms but occasionally I do get a very quick, short lasting shock elsewhere in my body. But that makes sense doesn't it? If I have this neurological condition in my head, it would make sense for me to be prone to having some neurological problems elsewhere in my body - even if its extremely brief and mild.

From what I have read here and from what I am currently experiencing, some Docs will shy away from MVD discussions if you are Type II / ATN BUT Red has pointed out numerous times that we are also candidates for succesful MVD's.

You should read up on ATN / Type II on the face info page. There is also lots of info to read in the ATN group.

Elaine

These were my symptoms exactly.In my situation what had happened was the pressure of the compression(TN) had wore almost all of the sheathing of my Trigeminal Nerve completely off to where it was close to a bare nerve.The neurosurgeon said that basically everytime my heart beat, the flow through the blood vessel signaled an ATN type pain.I have heard this can also signal pain down your neck.Recently,yesterday,I had surgery to correct my recently diagnosed Occipital Neuralgia that occured from having my Occipital Nerve severed during my Microvascular decompression.Im just saying this was my situation and you would want to talk with your Neuro to see if any of this would make sense to him/her.

One note - the Neurosurgeon I saw,said he had seen 6 cases like mine this year in which an Occipital Nerve had to be severed following a MVD.

Rick

PS - If you havent had an MRI yet I would push your doctor to getting one.

I am not an expert but sounds like TN to me. I have ATN and it means that I have a grinding gnawing pain where my wisdom teeth should be so I am guessing that you have TN and not ATN but of course iam not a medical professional

Dear Dianna,

I have not read the posts below, however, yes, there are many accounts from patients who have both Type I and Type II symptoms. I wonder if some other type of Neuropathy is involved given the burning in your arm, if you have had an MRI and if so, if compression was found.

I would like to express my empathy for you for all you are enduring. I hope that you and your doctors are able to work together to find what works to relieve your pain as soon as possible.

Thanks everyone for your replies and empathy. My heart goes out to us all and anyone in pain. Chronic pain has taken over and robbed many of our lives and I hope that we all find our "answer" to minimize our pain and regain our lives. I go today for a anesthetic injection in my face to see if I can find some relief. The doctor is going to follow the Trigeminal nerve through my face and inject anesthesia next to it to numb it for a while. We are hopeful! Don't know how long it will last but even one day with little pain would be a blessing at this point.

Praying for us all to have a pain free day.

Dianna

I have ATN and when I mention pain going down my neck and arm to my middle fingers I do not get any good explanation from doctors.

Everything I have read says it is not uncommon for the two to coexist,

Don, my doctor mentioned something about peripheral neuropathy being why my arm is weak and numb, and that this was due to CNS involvement. Did your doctors say anything about any of this?



Don said:

I have ATN and when I mention pain going down my neck and arm to my middle fingers I do not get any good explanation from doctors.

Don, your description of pain down your neck and arm sounds like some kind of "referred" pain, which can happen when there is involvement and sensitization of the Central Nervous System. Another issue for discussion with your docs could be Reflex Sympathetic Dystrophy or Complex Regional Pain Disorder (RSD/CRPS).

ill try to help when i unwind.

any ear pain, neck pain.

my neck nerves do this,

thinking about a neck emg. it proved my connection.

also the irritatioon of many nerves in that area is irritating my spine and arm… red-your thoughts.

they dont look hard enough! i have it all the time. its taking years to understand a connection.

booklass said:

Don, my doctor mentioned something about peripheral neuropathy being why my arm is weak and numb, and that this was due to CNS involvement. Did your doctors say anything about any of this?

Don said:
I have ATN and when I mention pain going down my neck and arm to my middle fingers I do not get any good explanation from doctors.

i think you are right. i am much clearer now. cant see those nerves on tests.

Stef said:

Dear Dianna,

I have not read the posts below, however, yes, there are many accounts from patients who have both Type I and Type II symptoms. I wonder if some other type of Neuropathy is involved given the burning in your arm, if you have had an MRI and if so, if compression was found.

I would like to express my empathy for you for all you are enduring. I hope that you and your doctors are able to work together to find what works to relieve your pain as soon as possible.

Hi Rick.

I am in the same situation as Dianna and yourself. Your statement regarding the need to have your occipital nerve severed also piqued my interest. Why is that? I am curious as to how it relates to pain?

I am a canidate for an MVD (compressed trigeminal nerve) and have been considering it a little more each day as my face pain has come back after a short 3 month remission (well, not full remission). Am managing on meds, sort of, but not well enough to function on a daily basis.

Having pain all day long and interspersed with terrible moments of shocking pain is not fun.

I wish everyone well. Take care. Johanna

Rick Smith said:

These were my symptoms exactly.In my situation what had happened was the pressure of the compression(TN) had wore almost all of the sheathing of my Trigeminal Nerve completely off to where it was close to a bare nerve.The neurosurgeon said that basically everytime my heart beat, the flow through the blood vessel signaled an ATN type pain.I have heard this can also signal pain down your neck.Recently,yesterday,I had surgery to correct my recently diagnosed Occipital Neuralgia that occured from having my Occipital Nerve severed during my Microvascular decompression.Im just saying this was my situation and you would want to talk with your Neuro to see if any of this would make sense to him/her.

One note - the Neurosurgeon I saw,said he had seen 6 cases like mine this year in which an Occipital Nerve had to be severed following a MVD.

Rick

PS - If you havent had an MRI yet I would push your doctor to getting one.

If i have had 8 years of compression, i assume im wearing off sheating on several cranial nerves. The quickerI do something -release compression, it would seem the better. I have occipital, perhaps glosso, linguil and irriotated nerve roots. I also form adhesiond from the scar tissue. The body and face is structurally uneven. Theres alot of fluid collecting from the fibrosis. Where do I find a plastic reconstructive surgeon willing to give me the time I need to at least get it off of the muscle. I cant leave the house long or stay out long or there will be irritated nerve roots and pressure. MRI have not shown anything. I am short tissue. Surgeons do get nervous with my case. Thanks for the info.

Johanna Smith said:

Hi Rick.

I am in the same situation as Dianna and yourself. Your statement regarding the need to have your occipital nerve severed also piqued my interest. Why is that? I am curious as to how it relates to pain?

I am a canidate for an MVD (compressed trigeminal nerve) and have been considering it a little more each day as my face pain has come back after a short 3 month remission (well, not full remission). Am managing on meds, sort of, but not well enough to function on a daily basis.

Having pain all day long and interspersed with terrible moments of shocking pain is not fun.

I wish everyone well. Take care. Johanna


Rick Smith said:

These were my symptoms exactly.In my situation what had happened was the pressure of the compression(TN) had wore almost all of the sheathing of my Trigeminal Nerve completely off to where it was close to a bare nerve.The neurosurgeon said that basically everytime my heart beat, the flow through the blood vessel signaled an ATN type pain.I have heard this can also signal pain down your neck.Recently,yesterday,I had surgery to correct my recently diagnosed Occipital Neuralgia that occured from having my Occipital Nerve severed during my Microvascular decompression.Im just saying this was my situation and you would want to talk with your Neuro to see if any of this would make sense to him/her.

One note - the Neurosurgeon I saw,said he had seen 6 cases like mine this year in which an Occipital Nerve had to be severed following a MVD.

Rick

PS - If you havent had an MRI yet I would push your doctor to getting one.



elaine48 said:

If i have had 8 years of compression, i assume im wearing off sheating on several cranial nerves. The quickerI do something -release compression, it would seem the better. I have occipital, perhaps glosso, linguil and irriotated nerve roots. I also form adhesiond from the scar tissue. The body and face is structurally uneven. Theres alot of fluid collecting from the fibrosis. Where do I find a plastic reconstructive surgeon willing to give me the time I need to at least get it off of the muscle. I cant leave the house long or stay out long or there will be irritated nerve roots and pressure. MRI have not shown anything. I am short tissue. Surgeons do get nervous with my case. Thanks for the info.

Johanna Smith said:

Hi Rick. Just where is the neuropathy coming from and how do you test for it, if possible.

I am in the same situation as Dianna and yourself. Your statement regarding the need to have your occipital nerve severed also piqued my interest. Why is that? I am curious as to how it relates to pain?

I am a canidate for an MVD (compressed trigeminal nerve) and have been considering it a little more each day as my face pain has come back after a short 3 month remission (well, not full remission). Am managing on meds, sort of, but not well enough to function on a daily basis.

Having pain all day long and interspersed with terrible moments of shocking pain is not fun.

I wish everyone well. Take care. Johanna


Rick Smith said:

These were my symptoms exactly.In my situation what had happened was the pressure of the compression(TN) had wore almost all of the sheathing of my Trigeminal Nerve completely off to where it was close to a bare nerve.The neurosurgeon said that basically everytime my heart beat, the flow through the blood vessel signaled an ATN type pain.I have heard this can also signal pain down your neck.Recently,yesterday,I had surgery to correct my recently diagnosed Occipital Neuralgia that occured from having my Occipital Nerve severed during my Microvascular decompression.Im just saying this was my situation and you would want to talk with your Neuro to see if any of this would make sense to him/her.

One note - the Neurosurgeon I saw,said he had seen 6 cases like mine this year in which an Occipital Nerve had to be severed following a MVD.

Rick

PS - If you havent had an MRI yet I would push your doctor to getting one.

Who severs the occipital nerve?

elaine48 said:



elaine48 said:
If i have had 8 years of compression, i assume im wearing off sheating on several cranial nerves. The quickerI do something -release compression, it would seem the better. I have occipital, perhaps glosso, linguil and irriotated nerve roots. I also form adhesiond from the scar tissue. The body and face is structurally uneven. Theres alot of fluid collecting from the fibrosis. Where do I find a plastic reconstructive surgeon willing to give me the time I need to at least get it off of the muscle. I cant leave the house long or stay out long or there will be irritated nerve roots and pressure. MRI have not shown anything. I am short tissue. Surgeons do get nervous with my case. Thanks for the info.

Johanna Smith said:

Hi Rick. Just where is the neuropathy coming from and how do you test for it, if possible.

I am in the same situation as Dianna and yourself. Your statement regarding the need to have your occipital nerve severed also piqued my interest. Why is that? I am curious as to how it relates to pain?

I am a canidate for an MVD (compressed trigeminal nerve) and have been considering it a little more each day as my face pain has come back after a short 3 month remission (well, not full remission). Am managing on meds, sort of, but not well enough to function on a daily basis.

Having pain all day long and interspersed with terrible moments of shocking pain is not fun.

I wish everyone well. Take care. Johanna


Rick Smith said:

These were my symptoms exactly.In my situation what had happened was the pressure of the compression(TN) had wore almost all of the sheathing of my Trigeminal Nerve completely off to where it was close to a bare nerve.The neurosurgeon said that basically everytime my heart beat, the flow through the blood vessel signaled an ATN type pain.I have heard this can also signal pain down your neck.Recently,yesterday,I had surgery to correct my recently diagnosed Occipital Neuralgia that occured from having my Occipital Nerve severed during my Microvascular decompression.Im just saying this was my situation and you would want to talk with your Neuro to see if any of this would make sense to him/her.

One note - the Neurosurgeon I saw,said he had seen 6 cases like mine this year in which an Occipital Nerve had to be severed following a MVD.

Rick

PS - If you havent had an MRI yet I would push your doctor to getting one.

A word of caution on "severing the occipital nerve": this step should be regarded as a last high-risk long-shot measure when EVERYTHING else has failed. Severing a nerve can cause sensitization of the central nervous system and re-occurrence of a type of pain called "deafferentiation" pain that is far more intense than the original. It is as if the central nervous system "expects" the sensed information that should be coming from each nerve -- and when that data flow is interrupted, the CNS reacts by trying to find ways "around" the outage. This may be the origin of what is called "phantom pain". Talk with your neurosurgeon at length about risk factors before you even consider such an extreme step.

Regards, Red

I have ATN on the left side which is my worst to deal with as far as the pain. I also have TN on the right side. The right side is paradise compared to the ATN. I did not even know it was possible to have both. I was diagnosed with the TN on the right 3 months after my left MVD. I hope you find some relief.

I had such severe ATN attacks that the pain would go down my neck into my arm and my left arm would actually contract. I actually had an attack in the doctors office and Dr. Sekula was able to see it. You are so right it feels like that side is on fire.

I really hope you have some relief soon and get the answers you need from your doctor.