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Living With Facial Pain

TN Recent Diagnosis - Help


#1

Hello everyone,

I have been in pain on and off for the past 5 months. At first I was put on antibiotics (3 rounds) because my doctor believed that I had a sinus infection. Then, after a few trips to the dentist, endodontist, and then back to the doctor’s office I was referred to a neurologist and been diagnosed with TN.
I was put on Oxcarbazepine and gradually increased the dosage to 600 mg. My doctor also suggested that I take 800 mg of Advil 3 times per day. I am still having a few episodes of pain per day. I am a teacher and have been off for the summer. However in a couple of week I am due to be back at work and I am really worried about teaching 5 classes in a row with the symptoms I have been having. I am not sure how I am going to do it.
I am really sad at the thought that I may not be able to handle my job.

I am looking for information and support. I would love to pass along to others anything I learn with my experience.


#2

I can tell you advil isn’t going to do anything for you. TN is famous (or infamous) for not responding to OTC treatments, or pain meds in general, really. ATN (atypical TN) tends to respond to pain meds, usually narcotics, sometimes to lidocaine.

You may want to try a lidocaine patch just to see if it helps. It’s avail at the drugstore OTC under the name SalonPas and isn’t very expense to try. But be aware that TN will probably not respond to it, ATN probably will.


#3

Thank you. I will get some today and I will let you know.


#4

Sorry if I have not responded quickly. You see, I am a teacher, and our school has already started back.You know how that is! Yes,I am a teacher with TN, and have had TN for 9 years, and have taught full time for all of that time. I am a classroom music teacher, no less.

 I can certainly relate to your feelings.  I have the same ones every time back to school is approaching.  I have been on tegretol for all of that time.  Most of the time, I am sufficiently covered for pain.  I can increase the amount I take as needed.  For the times that my pain in not bearable, my doctor has given me other meds. which have helped me to get through.  
Last year, at back to school time, my pain was worse than I ever remember.  I started going to a chiropractor, and the pain went almost totally away.  (of course I still took my tegretol, but minimal doses, but nothing else.)
 I can say that it is typical for TN to have some very bad times, but it is also common for many of us that those  bad times do not stay, and there are good times, when the pain is manageable.  I hope that you have some good times coming up soon.  
 I'll end with an old saying,"It is too bad that those of us who really know how to run the world are busy TEACHING SCHOOL!

TE


#5

Thank you so much for responding. It is so nice to hear of a colleague that has dealt with TN and has been able to pull through. Your email was really encouraging. I have debated for a while about going to a chiropractor especially because I have some neck pain. I will give it a shot and let you know.

When are you back at school? Fortunately I don’t start until September 6th. I am a language teacher. I teach Italian and Spanish. So there is a lot of talking in my class. I hope TN will be manageable so that I can continue to do so.

Wishing you a great school year!


#6

Dear Llipetri,
Teachers had to report at my school on Aug. 13th, first day of school being Aug. 20th. It is miserably hot here, and we have thunderstorms from time to time, but our fall, spring and winter are lovely! Our last day of school is always late May.
I do not want to pretend to be an expert on TN or anything, but I will say a few things from my experience. Each case is different.
I found that I have had to be very careful with whom I share about my TN. There are only about 1% of us diagnosed with this in the U.S., so the chances that the person you tell about it has never heard of it. Many people seem to only believe what they can see. I have told colleagues that I am in pain in my face, and even after an explanation they say “I don’t see anything.” The implication is that I am faking, or being dramatic. That hurts.
The principal must know, however,so I have made a point to give her articles, and a thorough explanation. This has gotten me out of extra duties, (morning duty, parking lot duty, etc.) I found this to be a life saver when the weather is bad. On the two or three times I have left work because of TN, all I have to do is point to my face, and I’m out the door.
Really with medication, prayer the chiropractor, and not giving up, I have found my particular case of TN to be manageable. Not fun, not ideal, awful at times, but I can do it. I hope that your case is like that too.
Remember, we are teachers, and we can handle ANYTHING!


#7

Hi llipetri,

Sorry to hear you’ve been diagnosed with the indescribable pain of TN. I am not a teacher but will speak to your pain.

For fast relief of those pains that feel like someone is chasing me around, slapping me in the face with a live electric wire and they won’t stop, I’ve used cayenne salve. I think you can find it in most Co-Op stores and maybe the pharmacy. I make my own. It’s fast deadening of the nerve endings is such a blessing when I am in crisis. You just have to get it on there.

I hope it works for you and can give you the gift of a short term instant relief button. It lasts 3-4 hours for me, sometimes longer.


#8

Sorry for not replying sooner. Your messages have been very positive and encouraging. My classroom is all set up. Tomorrow I am going in for PD and then the kids arrive on Thursday. Ahhh!!! I am 900 mg of oxcarbazepine. I had 6 great days but last night the pain came back. For now it’s just constant and burning no stabs fortunately. I hope you’re doing well. Thanks for all your support.


#9

Dear Llipetri,

I am sorry for your recent flare-up. Maybe it is because school is starting. I have always found that in times of stress, TN joins in to make things WORSE!~!
I live on the Gulf Coast, very near where hurricane Gordon came through. Everyone here is fine, having lived through much worse. There was not even a loss of power. But the tension over what was going to happen seemed to make my TN worse. Also maybe atmospheric pressure, who knows! Anyway, lots more meds. than usual for me, and a heating pad.
Hopefully you will feel better as school progresses. You will hopefully get more used to your meds. Now they almost feel normal to me.
Keep in touch, as we teachers need each other. I am not sure what your e-mail is, so please send me that.

 Hoping and praying for better days for you!

#10

Dear Lili,
How are you doing, teacher friend? We are about one month in! How are you managing? I am anxious to hear from you. I say a little prayer for you every night.


#11

Hi, how are you feeling?

I am so sorry for not writing sooner. It has been insane with back to school, my kids cross country meets, and trying to function in general. The pain has gotten better. Your prayers have worked. I am at 900 mg if Oxacarbaornzine at it seems to do the trick for the most part. How have you been feeling? By the way my name is Lucia, I am originally from Italy. What’s your name?


#12

Dear Lucia,
My name is Carol. I am so pleased to meet you.

I am delighted that you are feeling better!. We will definitely continue praying for you.

There was a terrible hurricane about 100 miles away from us two days ago. The destruction did not touch us, but instead brought us some lovely cool weather. My TN had been making me miserable! Now with the cooler weather I am feeling better, thanks for asking.

We are at the end of our quarter here at school, and are turning in grades for report cards. I have been working on Christmas music for a few weeks now, in preparation for the 3 Christmas shows we will be doing. I find that when things are bad for me, and I feel like I cannot sing or talk; when I actually start to do so, the pain lessens a bit.

Do you feel REALLY tired in the afternoon, with your medicine? I do sometimes, and it’s hard not to drink too much coffee.

When do you take your medicine? Do you take it with food?

I hope that you have many pain-free days to come.

Your teacher friend,

Carol


#13

Hi Carol,
Glad to hear that you are feeling better, and I am so glad that the hurricane did not cause damage where you are. It’s interesting how you like the cool weather for your TN. In my case it is the opposite. Any cold weather on my face sets off my TN. I have been indoors for the past few weeks.

I do get tired in the afternoon, however, it’s not too much more than I felt last school year. Anyhow, I drink two espresso each morning and then I am ready to bounce off the walls!
I take my medicine morning and night with or without food.
What medications are you on? How much do you take?

What are the names of your Christmas shows? I bet your job is both busy but rewarding. Fortunately I love my job. It keeps me going back even on the days I don’t feel great. When I am in the mist of teaching, I forget about everything.

What city do you live in? I live in a town called Seabrook in NH. It’s about a mile from the beach. I feel very lucky to be able to go walk by the ocean (as long as it is not too cold or windy lol) anytime I want.

Have a great night! Lucia


#14

I actually disagree with you here. I have found Advil Migraine to help some at times for me. I am not saying it will work for other people and it certainly does nothing to dampen a strong flare. But for me inflammation is a huge part of my problem with TN and with fibro. I do also get a lot of migraine symptoms mixed in with TN pain, as well as visible swelling and have a duel diagnosis of TN and migraines. I know that it is not an effective treatment for TN but it is one tool in my toolbox.


#15

So sorry you are going through this. It does sound like you are on the right track with your diagnosis and treatment. Unfortunately, it takes time for medications to be effective and some of us do need more then one to fully get rid of the pain. Stress is a huge factor for me. I realize that you are in early days but you really need to be kind to yourself and allow yourself time to find a treatment that works. Believe it or not, some of us have learnt to function despite having flare ups. I have had some very, very rough times with TN so I do not mean to minimize that but I am able to lead a full, productive and very busy life despite this wretched disease. The most important thing for me has been realizing when I need to say no, when I need to rest, when I need to take time off work. I have learnt that simply plowing through the pain only makes things worse. Another thing that will come with time is recognizing your triggers. For me it is stress, lack of sleep, my cycle, stormy weather and barrometric pressure. Ask anything here and be kind to yourself.
Advil generally does not help with TN once it gets ramped up. I say anything is worth a try but that is one reason TN is so difficult…because it is very difficult to treat.


#16

Hi Carol,

How are you? I imagine this season is really busy for you. I am been doing fairly well. Although from time to time I get a flare up that keeps me home.

I have been feeling really tired. On the weekend I sleep in late and then I still need to take a nap. Does that happen to you?

Miss talking to you. I hope all is well.

Lucia


#17

Dear Lucia,
Hang on, you will not always feel like this! Yes, tiredness is a fact of life for us. The medicines we take often cause this, and chronic pain by itself can make you very tired. I have experienced the tiredness you are talking about. I think that it is much worse in the beginning. I worried about my husband and my son soon after my diagnosis, I was sleeping SO much. But as time went on, my body began to get used to all the changes. I slept less and less. MOST of the time now, I sleep just a normal amount as anyone else.
About your pain… Didn’t you say that you live in the northeast? It is very cold there now, isn’t it? That could be making your pain worse. Myself, I live in the south (Gulf Coast region) Our extreme weather time is in late summer. That is hurricane season, and it is terribly hot. My TN is so bad then, that I would do almost anything to get rid of the pain. When it finally gets cooler, my pain lessens, and I get along much better. It almost never gets very cold here. But when I go outside, or come inside after being outside, I always feel a jolt of pain. I really think that temperature affects TN pain very much.
So you could try staying warm, not too hot, and wrapping a scarf around your head when it is very cold outside.
My son and I pray for all of my friends on this website every night. We mention you by name. God who created you, and loves you, will help you. Hang on until the help comes.