Help! Can anyone with an ATN diagnosis relate?

I posted this in the general forum, but someone recommended I try putting it here, too!

Hello, my name is Cassie and I'm new here!

I'm in the process of talking to my doc about ATN, but wanted to see if anyone could relate to my symptoms and help me figure out what questions and procedures to ask about.

To start with, I had brain surgery when I was 23 in June of 2010 to remove an astrocytoma from my temporal lobe, which involved a question mark like incision on the side of my head that runs parallel to the temporalis muscle and parallel to my ear.

5 months post op, I started having this terrible pain, which I had attributed to the fact that I was still healing and it was the wintertime, but the pain has remained. Last month, my surgeon removed a metal pin from my skull from the initial surgery, and this hardware removal didn't help at all.

My pain is a constant aching, burning, stinging, tingling that feels like it's inside my head. Sometimes, I get sharp, cramping pains like brain freeze but along the side of my head. I also have pains in my cheek, sinuses, and jaw, which can either be sharp and sudden or tingling and lingering.

Also, yawning seems to be very painful on the side of my head!

This diagram shows the range and areas of my discomfort. The bolded lines are where I have the most burning, tingling, & aching and the circled area (trigeminal ganglion) is my worst spot. It burns and stings and aches alllllll the time.


This pain seems to last 10-14 hours EVERYDAY. I have been on Gabapentin, Amitriptyline, Tegretol, Tylenol 3, Vicodin, Tramadol, and I've even had nerve blocks injected into my scalp.

Currently, I'm at a 5 on the pain scale (which is where I am most days)

To me it seems pretty obvious, but neither my neurologist or my neurosurgeon seem to have an idea of what's going on, but there is a neurologist at my clinic that specializes in atypical facial pains and neuralgias. I'm just trying to gather enough information to send to my regular doc to get a referral.

Can anyone with ATN relate to my description of pain?

Thank you for your help!!!! :D

My symptoms are different -- I have 24/7 pain in my teeth. But your description of the way the pain feels is how mine feels too.

For me, the only med to make a big difference in pain levels is Amitriptyline at 100mg/day. I know you said you already tried it, but I was curious what size dose you were taking. Most doctors start you at 10mg/day, so it takes a while to get up to 100mg/day. I have found that many people give up on it too soon, before reaching that dose.

I know a few people who did not have success with it the first time, but agreed to try it again, not giving up until they were up to at least 100mg/day, and they found some relief this time.

It really saved my life, and I encourage anyone with the constant, aching type pain to try it at the higher dose.

I hope you're able to find some relief soon. Please keep us posted.

Wow, that seems like a different sort of pain that I have but similar to a friend of mine. She tried various meds but finally stuck it out with Tegretol but made her feel too weird. She switched to Trileptal which also made her feel very "weird" but stuck it out and is 3 years post pain,with occasional pain now. She only gets intermittent pain about once a month now and it's not bad enough to go to the ER. I wish my pain was only intermittent. It's about a 7 on a scale from 1-10 on a daily basis 24/7 . I'm on the Fentenyl patch at 75 mcg. I will "pass" pills, if you know what I mean. Even that dose doesn't help much. They thought I was allergic or had a foreign body reaction to the metal in my face/jaw areas as well. Some of it was removed but I still had the pain. Sort of like you. Have you tried radio frequency ablations? I'm not sure if that's a good or bad thing in your case. I didn't get any relief from these but many have. I've heard that Dr. Ben Carson (?) at Johns Hopkins was very good at this sort of pain. Red had some good responses about some good doctors to go see from people who've had success with pain mgmt through MVD, but I'm not sure that's another option for you.

I can't seem to get past 25 mg/day of Elavil. I've stayed on it for about 6 months and the "out of it feelings" would last until around 3 pm every day. Fog. My days were wasted for the most part and the pain was still there unless I fell alsleep. I do the same thing with Neurontin, Tegretol, Trileptal, etc. I start low and as I go on up in pain mgmt, I cannot seem to get past a low to mid dose even with being on it a 6 month trial before switching. The docs write it off to that I'm just sensitive to neuroleptic type drugs. I don't seem to have that problem with the "narcotics" or other "antidepressants". What do you think?

Tinkerbell

The problem that I run into is that I'm really sensitive to the CNS side effects of all the meds.

I was on a super low dose of Elavil/Amitriptyline and it made my arms feel like they were constantly waking up from being asleep! it was terrible!

I was on tegretol when i was originally diagnosed/operated on for my brain tumor and i remember it made me very stupid and dizzy. The problem was I was trying to go to school at the time to get my bachelor's, so taking any meds that made me stupid weren't really an option!

I've thought about trying Lyrica, and now that I've graduated it's less important for my test taking skills to stay sharp. I'm open to trying and retrying meds. I know the gabapentin didn't seem to do ANYTHING for me but make me gain 10 pounds. I'm considering retrying Tegretol since it's the one I was most used to and I know it's also the cheapest! (I don't have insurance, sadly)

I sent a pain journal as well as the above diagram to my neurologist in the hopes that he can either help me himself or find someone who can!

THANK YOU EVERYONE!

:D

very similar to my pain, except I also have pain in my teeth that is worse than the temporal pain. the temporal area is quite sensitive, too. Good idea to do timeline for neuro doc, but stay on them. it’s easy for them to shy away from “difficult to treat” cases.

The pain journal is a good idea. I will try that to help my neurologist and other docs involved in my case understand. I am also sensitive to CNS drugs and neuroleptics, etc. Narcotics don't seem to bother me too much except for some drowsiness. Feeling out of it it and falling asleep in mid-conversation were not a good thing. I was a pharmaceutical rep for 20 years before this JAW surgery that started all this and falling asleep in mid-conversation was not a good thing...just in plain every day life, it's not a good thing. I finally had to stop working because I cannot drive and fall asleep either , which happened and I was lucky that I only tore up my car some. I started on Nuvigil to see if it helped and it did.

Keep us posted. I'll gain the 10 pounds any day just to find something that works for us "sensitive" to meds kind. Take care. Tinkerbell



Cassie said:

The problem that I run into is that I'm really sensitive to the CNS side effects of all the meds.

I was on a super low dose of Elavil/Amitriptyline and it made my arms feel like they were constantly waking up from being asleep! it was terrible!

I was on tegretol when i was originally diagnosed/operated on for my brain tumor and i remember it made me very stupid and dizzy. The problem was I was trying to go to school at the time to get my bachelor's, so taking any meds that made me stupid weren't really an option!

I've thought about trying Lyrica, and now that I've graduated it's less important for my test taking skills to stay sharp. I'm open to trying and retrying meds. I know the gabapentin didn't seem to do ANYTHING for me but make me gain 10 pounds. I'm considering retrying Tegretol since it's the one I was most used to and I know it's also the cheapest! (I don't have insurance, sadly)

I sent a pain journal as well as the above diagram to my neurologist in the hopes that he can either help me himself or find someone who can!

THANK YOU EVERYONE!

:D

I use an Android app for my pain journal and its sooooo handy! I just keep track on the app and back it up to a folder on my digital dropbox. I think the name of it is manage my pain lite or something. It even lets you add custom symptoms and pain descriptions.

The symptoms you describe have much in common with trigeminal neuropathic pain, possibly a consequence of damage done to the nerve during your astrocytoma surgery. A major distinction between ATN and trigeminal neuropathy is that ATN can emerge spontaneously for no apparent reason, and neuropathy tends to be associated with discrete events or injury.

For this category of pain, the treatments tend to emphasize tricyclic antidepressant meds that have a cross-action on neuropathic pain, of which Amitriptyline is one of perhaps 10 or 12 types. Some of the others should probably be tried, perhaps in combination with Baclofen (an anti-convulsant), Flexeril (a mild muscle relaxantg) or low doses of Valium (a tranquilizer). Those three drugs are fairly often combined with the tricyclics as "boosters" that seem to help in the action of the primary medication.

Also used in this type of pain if none of the tricyclics work at a dose whose side effects you can tolerate, would be the opioid meds or Methadone which is an opioid agonist. Vicodin and codeine are not the only meds in the latter class that can be tried, though all of them have their disadvantages in dependency and sometimes other unpleasant side effects.

One footnote if I may: the term "atypical facial pain" is not a legitimate diagnosis for any type of pain in the trigeminal nerve distribution. It basically equates to "get her out of my office 'cause I don't know how to help her." And it should not be left in your medical records, because some physicians (and some insurance companies) will take that diagnostic mislabeling as an excuse to deny you further investigation of the medical causes of your pain, deeming this fictitious disorder to be psychogenic in origin.

I wish you well,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

1 Like

Yeah neuropathy makes sense, but I don't even know if that particular nerve was involved in my surgery at all. When I look at a picture it seems right, but what if they were no where near there when they were cutting my head open the first time?

My surgeon has said that it's possible that my pain is completely unrelated to my surgery and that it could just be a coincidence.

Heck, it's even possible that my tumor grew back and is now pressing on my trigeminal nerve.

:/

I'm just waiting now. I keep asking my neurologist's office to let me see this particular doctor that is doing experimental treatment and specializes in TN and ATN. They keep reminding me that I already have an appointment with my current neurologist in September and that I need a referral to see this specialist. I don't have a GP because I don't have insurance and I just graduated so I don't even have the student health center to get a referral from. Do I even need a stinkin referral if I don't have insurance? I'm the one paying; I should get to see the doctor that I want to see.

I sent off my pain journal and diagram to my doctor to see what he can come up with. All I know is that I'm running out of Vicodin and I don't have the money to fill another script, and I certainly don't have the patience to live like this every day. My pain level is still at a 5, and I've already taken three 5mg-325mg norco today.

:(

Here's hoping I get something figured out by next week (when my meds will probably run out.)

Thank you everyone for all your answers!

This helps me soooooo much!

I just had no body to relate too....I just felt so lost and depressed from the pain. It's like you're on an island where you're in constant pain and everyone around you is having a great time.

It feels great to have the support of people who really understand.

I found this article, which is interesting and relevant and everything, but my pain started post-op instead of pre.

Trigeminal neuralgia as the initial manifestation of temporal glioma: Report of three cases and a review of the literature

Keep insisting on seeing that new neurologist, Cassie! It's tragic that some neurologists are sadly uninfomed about Type II TN and neuropathic pain. I went through about five or six neurologists (in the same medical group) before I found one who knew exactly what I expected a neurologist to know. Don't take no for an answer!

Best wishes,

Zen

Hi sorry you have been through so much and certainly can relate to everything you have posted. The only difference for me is I don't experience tingling sensation or don't recognize it. There are times I could literally rip my head off if possible but that won't work or solve anything. I have worked with MDs for years and understand kind of

how they perceive things from a diagnostic point of view.. ... They listen evaluate and simply try all avenues to accomplish and be successful in treating the patient. When they don't accomplish their desired effects meds etc they refer you to someone else...Do they understand what you are going thru; uh no...no one can unless they actually experience the pain and intensity of that moment. N o one relates so I hear you loud and clear. today is bad for me more intense lasting pain shock waves. ? ... Family does not understand let alone my Neurologist he acts as though he is tossing meds up in the air and he only wants to know did it work? Even though my symptoms remain the same as I document how they come and go he is not interested and goes back and forth on what I exactly have; finally I just laid it out to him this is what I have now what; 4 different meds in four different weeks...I am going to consult with a second neuro but I for one am not looking to cut on anything only advice .... None of this helps you but it does me to know you are experiencing these painful events. I have prayed on this as well and just having somewhere to vent helps. I wish you the best and please keep posting seems like we are very similar in our symptoms --- I fell into a glass window 2010 received 34 stitches to my right forehead ? that is where my pain started he said there is a nerve extending thru my eyebrow on that side...but now its growing in span over my ear and splashes of shock across my up cheek behind my eye; those I can deal but the major facequakes are well you know they are hell...Good luck and again thanks I will look for you to keep up with how your doing...Mina

Man....today is a painful day.

I have the terrible burning sensation that I have all the time, but my nerves are particularly achy all over the right side of my head. My right temple, cheek and upper jaw are the worst!

It feels like I have a cavity in all of my teeth in the upper row.

:/

I know what you feel Cassie about having a cavity in the upper row. I need a root canal in all teeth...it feels like it but not "reality." Docs can be frustrating unless they have some sort of pain they live with themselves. If you hear of any good regimens or procedures or docs, let me know and I'll do the same...Good luck...let's keep praying! What meds do you take?

Tinkerbell aka tracy tata

Mina said:

Hi sorry you have been through so much and certainly can relate to everything you have posted. The only difference for me is I don't experience tingling sensation or don't recognize it. There are times I could literally rip my head off if possible but that won't work or solve anything. I have worked with MDs for years and understand kind of

how they perceive things from a diagnostic point of view.. ... They listen evaluate and simply try all avenues to accomplish and be successful in treating the patient. When they don't accomplish their desired effects meds etc they refer you to someone else...Do they understand what you are going thru; uh no...no one can unless they actually experience the pain and intensity of that moment. N o one relates so I hear you loud and clear. today is bad for me more intense lasting pain shock waves. ? ... Family does not understand let alone my Neurologist he acts as though he is tossing meds up in the air and he only wants to know did it work? Even though my symptoms remain the same as I document how they come and go he is not interested and goes back and forth on what I exactly have; finally I just laid it out to him this is what I have now what; 4 different meds in four different weeks...I am going to consult with a second neuro but I for one am not looking to cut on anything only advice .... None of this helps you but it does me to know you are experiencing these painful events. I have prayed on this as well and just having somewhere to vent helps. I wish you the best and please keep posting seems like we are very similar in our symptoms --- I fell into a glass window 2010 received 34 stitches to my right forehead ? that is where my pain started he said there is a nerve extending thru my eyebrow on that side...but now its growing in span over my ear and splashes of shock across my up cheek behind my eye; those I can deal but the major facequakes are well you know they are hell...Good luck and again thanks I will look for you to keep up with how your doing...Mina



Tinkerbell said:

I know what you feel Cassie about having a cavity in the upper row. I need a root canal in all teeth...it feels like it but not "reality." Docs can be frustrating unless they have some sort of pain they live with themselves. If you hear of any good regimens or procedures or docs, let me know and I'll do the same...Good luck...let's keep praying! What meds do you take?

Tinkerbell aka tracy tata

Mina said:

Hi sorry you have been through so much and certainly can relate to everything you have posted. The only difference for me is I don't experience tingling sensation or don't recognize it. There are times I could literally rip my head off if possible but that won't work or solve anything. I have worked with MDs for years and understand kind of

how they perceive things from a diagnostic point of view.. ... They listen evaluate and simply try all avenues to accomplish and be successful in treating the patient. When they don't accomplish their desired effects meds etc they refer you to someone else...Do they understand what you are going thru; uh no...no one can unless they actually experience the pain and intensity of that moment. N o one relates so I hear you loud and clear. today is bad for me more intense lasting pain shock waves. ? ... Family does not understand let alone my Neurologist he acts as though he is tossing meds up in the air and he only wants to know did it work? Even though my symptoms remain the same as I document how they come and go he is not interested and goes back and forth on what I exactly have; finally I just laid it out to him this is what I have now what; 4 different meds in four different weeks...I am going to consult with a second neuro but I for one am not looking to cut on anything only advice .... None of this helps you but it does me to know you are experiencing these painful events. I have prayed on this as well and just having somewhere to vent helps. I wish you the best and please keep posting seems like we are very similar in our symptoms --- I fell into a glass window 2010 received 34 stitches to my right forehead ? that is where my pain started he said there is a nerve extending thru my eyebrow on that side...but now its growing in span over my ear and splashes of shock across my up cheek behind my eye; those I can deal but the major facequakes are well you know they are hell...Good luck and again thanks I will look for you to keep up with how your doing...Mina

Thanks Mina for your "sympathy" that we experience.. I hope we find relief some how some way. I pray that those who have had relief please do not drop off and stay on line and help those of us who need it whether it's with a drug regimen, a doctor, a procedure, etc. We've got to help each other. Thanks, I'll keep you posted if I get any relief...and vice versa, OK? Thanks.

Tinkerbell

Hi Cassie, I am new to this awsome site but, not new to ATN. I encourage you to keep pushing and hounding your family Dr. or current neurologist to get to a provider who deals with our disorder on a regular basis. I had the best care from a ENT neurologist, I finally got the diagnosis that lead to the radiation oncologist who will do Cyberknife procedure soon. This took 6 years! Don't let this ruin your life for as long as I did. INSIST on seeing the correct specialist,do your own research and have the name of the specialist you want to see. I have found you and only you can be an advocate to your care. Talk to us here and pray.

Best of wishes and prayers to you.

Latte Lady -- be aware that Cyber Knife has a rather mixed record of outcomes. Like Gamma Knife, about half of patients who receive one of the stereotactic radio surgeries experience recurrence of pain within three years. If you want details, send me mail at ■■■■■■■■■■■■■■■■■■■, and I'll send you the practice standard of the International Association for Radio Surgery.

Regards, Red