My journey with TN began in June of 2012. I've had a few remissions and have been so grateful when the pain was totally gone. About a month ago I had some dental work done for a triple crown fixed bridge on my lower left back teeth. My TN pain has always been on my upper right side of my mouth. Since that time, I began having those dull twinges in my mouth, nose and behind the eye that was almost like the TN teasing me that it was going to be coming back. 48 hours ago, I realized it was no joke and the TN is back, but it is so much worse than it has been before. My pain alternates with the electrical jolts and feeling like I have a mouth full of hornets.
I cannot swallow, smile, brush my teeth or even drink anything without horrible pain. I did try some yogurt eaten with a plastic spoon (since a metal spoon makes it worse) It took me an hour to eat a small container and I had to be careful not to let my tongue touch the right top of my palate or the jolt was immediate.
I had an attack in the teacher's lunchroom on Thursday when eating with my friends and it was frightening for them to see me winch and then the tears just come gushing out of my eyes. Partly because of how much this hurts, but also because my eyes overflow with tears that I can't control.
We are currently iced in here in Texas with impassible roads and my Dr's office is closed due to weather. Fortunately we are out of school due to a snow day, but I fear heading back to school on Monday. I work with Kindergarten and am wondering how to get through my day.
Oh, you poor thing! My heart goes out to you. I have nothing to offer you except my sympathy. I had my own muesli/yoghurt experience just this morning so I feel your pain! I really, really do.
Can you get to a quick clinic and tell them you need Tegretol/Carbamazepine.Or whatever you took before if you did.You must be in the DFW metro.Im in Joshua with 4" of ice everywhere.If it gets too bad,get to the emergency room.I never did,but I've learned here that they can help.Sometimes Oxygen and then good pain meds.Good luck,i know how it is.Mine came back worse each episode.I finally had a successful Gamma Knife procedure.It may not be permanent ,but im grateful for every good day!
My update: Thanks for those who have so kindly responded to me. Having this sounding board helps us all keep our sanity when we think that surely we must be losing our minds right?
I have a RX for both Tramadol and Tegretol that I was given last year. After reading so many stories of patients having issues with these meds, I did have the RX filled but decided not to take them and just try to live through the pain as the longest I've had either the electrical jolts or something like a mouth full of very, very angry hornets repeated stinging me was about 3 days. This has been 2 weeks, so this morning after stepping out of a seriously hot shower and about burning off my face with hot water, (it really helped) I decided to take a Tegretol. Then I realized that I had not taken the Tramadol which is actually the pain medication. Darn! Now I'm nervous to go and take the Tramadol since it's only been an hour since I took the Tegretol. Can you take both at the same time?
As soon as the roads are passable, I will have my Dr phone in an order for the cream and mouthwash and the patches. Right now, we cannot even get out of our garage the roads are so bad.
I have written out a little card that I can show my friends once we are back at school when I have an attack because there is no way I can talk when the episode is raging. It is disconcerting when the attacks come and I don't want them to think I'm extremely sad about something that is making me cry. Helping my students understand might be a different matter, however.
As you've experienced, yes, each time the TN returns, it IS worse than before. God help us all.
Hi Nannie and Don. I am near Denton, TX. I too have been trapped for days. We have 4 inches of ice and it is not melting by itself. I think we might be trapped until Tuesday. My neighborhood has no drivers at all.
I took kcdancer’s advice and got lidocaine ointment. It helps some for breakthrough pain. I get a stabbing pain near my eye and temple. It is hard to explain to people when the eyes just tear up suddenly and the ugly wincing. I have had to explain it to my 8 year old daughter and 3 year old twin boys. Even at that age, they still understand. When the 5 minute episode or so ends, they will give me tender hugs. When one doesn’t understand why mom is crying, they will explain it to each other. Stress is sometimes a trigger for me and being trapped has been challenging to me. Not so many sharp pains, but more of a constant pressure. Last night was weird for me though. My husband made chili, and it made my mouth, tongue, throat feel like pins and needles (which I don’t get with my TN). I though he made the chili too spicy. But my daughter then ate it and said it was fine. Then my head just felt weird. I told the family I was going to lay down for a minute, which was 7:00pm and pretty much slept until 6:30am. I don’t know what happened. It was like the hyperacute pain sensors in my head overloaded and my body had to sleep it off. I totally feel like I have a hangover without any of the drinking.
Anyway, sorry for the digression on my own pain. I hope you get your pain under control and can speak to your doctor tomorrow and get out to pick up the meds. I hope you can find something that will help. A note for your colleagues will help them understand. And kids can understand too with the right level of explanation.
Good morning Momof3,We made it to the grocery and back.Really only did it because we were so stir crazy.Roads were horrible and we were lucky to get back safely.No mail for 3 days.Nothing melting yet,but hopefully soon.I just wanted to say that tegretol IS a harsh drug,but you can most likely tolerate it fine and as much as i disliked the way it made me feel,it did help me tremendously.It will make you sluggish and tired.But that is SO much better than unbearable pain.In the earlier stages as you are,it is nearly a cure for many.Don't be afraid to give it a go is what i'm getting at.The bad side effects are rare.My wife has worked for the FWISD for 29 years and was a 1st and 2nd grade teacher for much of that.She is now in more of a new teacher support role.In other words i respect what you do tremendously.( :
Mom, so glad to know we are almost neighbors.....I'm down the road in Plano. I'm seeing the first signs of melting on the ice hanging off our patio, but know that any melting may soon be refrozen once the evening comes.
I appreciate your comments and will reconsider taking the Tegretol that I've had as an RX since last summer and was being hesitant to take. We have a phone consulting service as a teacher benefit and I spoke with a wonderful doctor this morning, but he said he could not call in an rx for any Lidocane products because there were a controlled substance. I wll have to wait until my regular clinic opens again, which may not be until Tuesday since they follow the McKinney school closing protocol.
It feels like the biggest gift when the pain is in remission, right? During a flare up, I can't talk, I can't smile, can't eat, can't drink coffee, (for a teacher....coffee is essential) and yes when the jolts are at their worst, my eyes water uncontrollably and my teacher peers get very concerned. This flair up only started last Wednesday and thankfully the worst attacks have been since Thursday afternoon. Then the ice day and now the weekend. This is the longest the pain has hung around since July of 2012. I have read that after each remission, the pain comes back with more fierceness and stays longer. That is not a happy thought. I continuously swab Oragel on my gum and it helps for about 4 minutes.
Do you take the Tramadol AND the Tegretol at the same time? I will try to get my regular doctor to order the ointment, mouthwash, patches for me tomorrow and hope that takes the edge off when I'm at school.
Everyone take care.
Momof3 said
Hi Nannie and Don. I am near Denton, TX. I too have been trapped for days. We have 4 inches of ice and it is not melting by itself. I think we might be trapped until Tuesday. My neighborhood has no drivers at all.
I took kcdancer's advice and got lidocaine ointment. It helps some for breakthrough pain. I get a stabbing pain near my eye and temple. It is hard to explain to people when the eyes just tear up suddenly and the ugly wincing. I have had to explain it to my 8 year old daughter and 3 year old twin boys. Even at that age, they still understand. When the 5 minute episode or so ends, they will give me tender hugs. When one doesn't understand why mom is crying, they will explain it to each other. Stress is sometimes a trigger for me and being trapped has been challenging to me. Not so many sharp pains, but more of a constant pressure. Last night was weird for me though. My husband made chili, and it made my mouth, tongue, throat feel like pins and needles (which I don't get with my TN). I though he made the chili too spicy. But my daughter then ate it and said it was fine. Then my head just felt weird. I told the family I was going to lay down for a minute, which was 7:00pm and pretty much slept until 6:30am. I don't know what happened. It was like the hyperacute pain sensors in my head overloaded and my body had to sleep it off. I totally feel like I have a hangover without any of the drinking.
Anyway, sorry for the digression on my own pain. I hope you get your pain under control and can speak to your doctor tomorrow and get out to pick up the meds. I hope you can find something that will help. A note for your colleagues will help them understand. And kids can understand too with the right level of explanation.
Hi Nannie, So so sorry for the return of your pain. When I was in a similar situation my first task was to make sure I kept my hydration up. I would use a straw carefully positioned in my mouth where the swallowing was almost automatic. Not sure you can find a way to situate the straw. I ate liquid foods for 8 days straight, no talking and took 45 minutes to brush my teeth each night at least tried to very very carefully. KC Dancer has recommended lidocaine patches and mouthwash that your doctor can prescribe. Also lidocaine cream can be found on Amazon at lower doses. I have not used this myself yet but have it in my emergency kit. I learned to make some yummy smoothies but they went down some days better than others. Maybe there is some medication that your doctor can call in for you. Tina
Tina, which lidocaine cream do you have experience with? Also curious what % I should look for. I tried a piece of a patch a few weeks ago and it worked almost immediately.
I just retrieved my rx for Lidocane mouthwash. It was only a 2% concentration, but I thought instead of swishing it, I would simply dab a Q-tip and rub in on the areas of my mouth where I get the jolts and burning. It seemed to help almost immediately. Thank you dear Lord. I'll update again soon. I know it's only a temporary quick fix, but I'll take that for now.
Sorry Nannie. Maybe swishing might work better. I personally have never used it. I use the lidocaine 5% ointment. I was told by my doc and pharmacy that is what is available here in US. There is also something called EMLA(?) with lidocaine in it like a cream that I haven’t tried. I don’t have patches because I can’t work with them on my temple and cheek (at least I would feel like I would have too much explaining to strangers to do). I haven’t used the tramadol or tegretol either. I am on gabapentin. I still have problems with breakthrough pain but the lidocaine is helping to a small degree. But I don’t usually have problems with my mouth like you do. I hope you find some relief soon. I’m praying for you.
Thank you Momof3. I realize that I actually have been getting more numbing relief from the Oragel than I did the Lidocaine. I can see if my dr can get me the 5% cream. Do you have any word if the schools in Denton are closed tomorrow?
Have you taken your tegretol?Chase it with a couple of tylenol and a hydrocodone if you have it.Wife Tammy sewed me a little pillow type of thing filled with dried rice.I would heat it in the microwave and use the heat of it to somewhat sometimes help the pain.Possibly sooth the nerve.Be still and avoid triggers as possible.Be calm as possible.
Don, the Tegretol and the hydrocodone make me so dizzy I can hardly walk a boatload of nausea. However, I will do and try at least a half tablet of the Tegretol and see if that will help stop the nerve spasm. Not sure what more I can do at this point. Feeling very defeated right now. Thanks for the prayers and kind thoughts.
Nannie, keep the faith. The pain can be calmed down with the right combination of drugs. I have lidocaine 5% ointment. They couldn’t locate a cream. I think amazon has a cream without rx but I am leary and I think some reviews said they got the wrong percentage. I don’t know if it makes a difference ointment vs cream.
No word if the schools are going to be closed. My husband has been out for about 3 hours over the last few days shoveling to get us out of the driveway. He finally got out around 4:00. He made it to the elementary school and back so I think it might be ok. As long as the shoveled and melted areas don’t refreeze into a mess. My family is stir crazy after 72 hours without leaving the house. I will be glad to get out tomorrow.
Just take the tegretol and Tylenol or your favorite otc pain reliever.The thing I found with tegratol is you get somewhat accustomed to the weird feeling.Also for dizzy,you can get meclizine otc.It works good,but increases the tiredness im afraid.It always helped me.Hang in there,you will get past this rough patch.
if you go through your Doc you can get higher dosage. I got it just to be prepared and have not had a pain event to need it. Knock on wood!
shadow2 said:
Tina, which lidocaine cream do you have experience with? Also curious what % I should look for. I tried a piece of a patch a few weeks ago and it worked almost immediately.