I just saw the neurologist for the first time. Although she did confirm my diagnosis of TN, she was cold and very uncaring. She tried to tell me that most TN does not cause suffering from constant face pain. She did a neurological examine and then increased my medication dosage. When I asked her what to do because I can barely function on the current dosage and she is increasing it, she just ignored my question. When I asked about the course of action from here, she told me she would refer me to a neurosurgeon because all she could do was maintain my medication. I'm so frustrated! I'm taking the meds and they are not lasting until my next dose but I'm barely able to function on my current dose and all she can say is increase the dose with no recommendation on how to control the pain??!! Last I read, there is constant facial pain with TN2. Am I wrong? I was originally told I had TN1 & TN2 now this doctor says that there is no TN2? WOW! I would cry if it didnt make my face burn. So frustrated. Thanks for letting me vent.
Unfortunately you’ll find many Neurologists who don’t have many if any patients with TN, only “know” Classic TN 1, anything other than that they have no idea and will label it ATN or not even recognize it.
Neurology is a vast field, and unfortunately many do not read/update their education on every neurological disorder or disease.
You’ll find we the patients, know more about TN than they do.
The trick is finding out if this Neuro is willing to learn about it in order to support you, OR finding a Neuro who will.
To be honest, all the neuros can really do is try to adjust our meds and give us detailed instructions to do so, as well as introduce new ones when current ones fail.
All I know, I learned and researched myself.
My Neuro knows about the meds and together we come up with a plan.
He knows I research, but he respects and knows that I don’t self diagnose or believe everything I read. This relationship took awhile to build.
I saw many neurologists before I found him…
It’s discouraging for sure, because just getting through the pain is enough let alone having to advocate for ourselves, but unfortunately it’s what we have to do.
My advice, would be to get a consult with another neurologist OR see your family physician who might be able to read about TN and look into other medication options for you and support you.
I so get your frustration…I encountered the same many years ago. It’s so disheartening. I really wish these “specialists” could walk a day in our shoes and then tell me there’s no TN2 or constant pain!
Things will get better, believe it!
In the meantime look at trying various “home remedies” to get through as best you can …like heat, ice, oragel, lidocaine creams, Advil, keeping as stress free as possible.
Take a deep breath and forget about this visit today…tomorrow’s a new day.
Huge ((( hugs ))) Mimi
I'm sorry you had such a miserable experience with that doctor. My neurologist told me that ATN can cause constant facial pain so ..... maybe you should look for a different neurologist. It's so hit and miss with doctors and even more so when you have something as rare as TN/ATN. You deserve a doctor that cares!! Please don't feel disheartened - like Mimi said, we often know more about TN than the doctors do.
Hope you have a better day tomorrow!
I am sorry . In my experience ( which inst much) every MD I have encountered has been very uncaring . I suffer daily. Almost every hour of every day with extreme pain . I am not a wimp, I am not exaggerating. it is horrible . Unfortunately unless others experience this pain for themselves I don;t think thy will ever understand it . I am just glad to have this forum of people that do understand where I am coming from.
Thank you very much for your replies. I had an emotional breakdown yesterday after seeing the neurologist but I feel better emotionally today. It is so difficult to deal with the pain everyday and the feeling of letting others down because I am unable to work for several days at a time. Adjusting to the meds is another battle but I feel stronger when I get your support. Thanks again for your replies.
You said that the medication does not last until the next dose-but she want to increase the dosage. I has a similar experience. I found that adding an in between dose helped me tremendously. The morning and evening dose did not help enough, but adding the noon dose helped me get through work in the afternoon. This might work for you if the medication helps, but just doesn’t last long enough. Maybe the MD would be ok with that. It has a similar effect of increasing the dose, but spreads it out like you might need.
when I went to my neurologist he said he didn't want to put me disability because it was too much paperwork!!
When I told him how unbearable the pain was and many times I have wanted to go to the ER but was unable to move his response was that I would just be wasting everyone's time in the ER. Really...I wish he could feel my pain for just 15 minutes.
That is what she suggested. The problem is, I am so high that I cant function. I have been out of work for several days because I would hate to injury someone driving high.
Momof3 said:
You said that the medication does not last until the next dose-but she want to increase the dosage. I has a similar experience. I found that adding an in between dose helped me tremendously. The morning and evening dose did not help enough, but adding the noon dose helped me get through work in the afternoon. This might work for you if the medication helps, but just doesn't last long enough. Maybe the MD would be ok with that. It has a similar effect of increasing the dose, but spreads it out like you might need.
When I asked the question on how I was to function, she totally ignored the question. When I brought up the subject of disability, she said I would have to see my PC because he's treated me longer than she has. Talk about passing the buck!
LEE said:
when I went to my neurologist he said he didn't want to put me disability because it was too much paperwork!!
When I told him how unbearable the pain was and many times I have wanted to go to the ER but was unable to move his response was that I would just be wasting everyone's time in the ER. Really...I wish he could feel my pain for just 15 minutes.
I understand how you feel , I work with patients and I am so afraid I will lose my job or I will make a mistake on all the meds I am on
I took a 4 week leave from work to try to adjust to all the meds, but I have pain at work at times and I worry that the pain will make me make a mistake ! Is disability an option. For tn patients ?
Lidocaine face patches saved me… I was able to take less meds.!!
Look under doctor tab and find one we recommend…travel further if you need the help!
There is discussions under face pain tab i think about disability.
I got an MVD by a great surgeon…no pain no meds at 2.5 years
Keep reading, asking, learning , repeat!
I had the same problem with the 1st neurologist I was referred to. I couldn't even stand in his office on my first visit, and he seemed very flippant about it. It was outrageous. I really could not even care for myself. I couldn't work and my husband had to take off to care for me. It was bad. I was in the ER often and on morphine which didn't even touch my pain. It did knock me out. Hooray for sleep! I actually found an ENT who got me on Neurontin, which helped initially. I have had TN since October 2013 and through much research I found the man on the east coast who really knows TN. Because I'm not playing around....this has to end. I will not live like this. I know "we" all feel the same on that. Luckily, the neurosurgeon was less than 2 hours away and it's worth the drive. Finding the right person to help is a challenge, but doable. I hope you can find some relief. The only reason I'm able to type this message is because I'm on the right meds. I hope you find yours soon.
I think the only way they could understand is to feel what we feel even for a minute.
tigobitties2212 said:
When I asked the question on how I was to function, she totally ignored the question. When I brought up the subject of disability, she said I would have to see my PC because he's treated me longer than she has. Talk about passing the buck!
LEE said:
when I went to my neurologist he said he didn't want to put me disability because it was too much paperwork!!
When I told him how unbearable the pain was and many times I have wanted to go to the ER but was unable to move his response was that I would just be wasting everyone's time in the ER. Really...I wish he could feel my pain for just 15 minutes.
From what I've read disability is an option but I dont think it's an easy option. It is worth looking into. I have been out so much that I no longer have any paid time off but the pain persists. I have begun looking at the disability option but I have to start with my PC and he's leaving the clinic I currently go to.
Annie said:
I took a 4 week leave from work to try to adjust to all the meds, but I have pain at work at times and I worry that the pain will make me make a mistake ! Is disability an option. For tn patients ?
Thank you for your reply. I will continue to look for the right combination of meds. I pray for relief for us all.
CrazyLady said:
I had the same problem with the 1st neurologist I was referred to. I couldn't even stand in his office on my first visit, and he seemed very flippant about it. It was outrageous. I really could not even care for myself. I couldn't work and my husband had to take off to care for me. It was bad. I was in the ER often and on morphine which didn't even touch my pain. It did knock me out. Hooray for sleep! I actually found an ENT who got me on Neurontin, which helped initially. I have had TN since October 2013 and through much research I found the man on the east coast who really knows TN. Because I'm not playing around....this has to end. I will not live like this. I know "we" all feel the same on that. Luckily, the neurosurgeon was less than 2 hours away and it's worth the drive. Finding the right person to help is a challenge, but doable. I hope you can find some relief. The only reason I'm able to type this message is because I'm on the right meds. I hope you find yours soon.
I read everything I can get my hands on. It has helped me learn a great deal. Being on this site and being able to ask questions and get support has been a godsend. The emotional part is as draining as the pain. I asked about the patches and she asked where I would put them on my face and stated they didnt work anyway. She also stated that she knows a "ton" of people with TN and it's very common now. I am going to continue my battle to find help and appreciate all the support.
Kc Dancer Kc said:
Lidocaine face patches saved me... I was able to take less meds.!!
Look under doctor tab and find one we recommend........travel further if you need the help!
There is discussions under face pain tab i think about disability.
I got an MVD by a great surgeon....no pain no meds at 2.5 years
Keep reading, asking, learning , repeat!
the neurologist i went too was sort of a jerk and his assistant was the one who helped me, as i only saw the 'dr' the first time and the asst the rest.
I'm sorry you had to go through that. I wish more doctors has understanding of how painful this really is.
Mace said:
the neurologist i went too was sort of a jerk and his assistant was the one who helped me, as i only saw the 'dr' the first time and the asst the rest.