He’s now up to 1.5 tabs of carbamazepine 2x/day(he’ll go up to 2 tabs 2x/day on Saturday), and his symptoms are definitely lessening, thank God! The “shocks” are now very few and far between, and today he said he actually had his car window opened and felt the wind blowing through his hair without much difficulty! But he does have some mild toungue and now throat pain, which is new. He says it’s hard to pinpoint, but it feels like his throat hurts when he blinks.
Does anyone else have pain in the tongue and/or throat with TN?
The progression of pain for him since this all started back in June has been strange. First it was only in his temple, then the scalp kicked in, then the eye, then the ear, and now tongue and throat. The ear pain has been troublesome, and more like a dull throb inside his ear. He wondered if he had an ear infection, but we held off on gettin it looked at, figuring it was most likely related to his TN.
Anyways.
As far as side affects from the meds, he is feeling some nausea these past three days, and he did have some major itchiness on his upper thighs, but I looked at it, and it didn't look too bad, but will keep my eye on it. He tends to have sensitive skin, and that may or may not have been random.
We're hoping he will continue to progress and control this by the time school starts next week (he's a 4th grade teacher). He said he could not even imagine working when his pain was so bad, and this came from a guy who in his 20 year teaching career has only missed 4 days of work, and those were because of the birth of one of our children, my dad's funeral, his nephew's funeral, and an extra day for our honeymoon! So when he said that, I knew he must have really been suffering.
The tongue pain… I know all too well. Before I knew what was going on with me, I used a tube of Orajel per day on my tongue… it helped for about 10 seconds. Seemed the tip of my tongue and right side were affected the most. Then it would calm down. …but soon came back.
I’ve also had throat pain, but it calmed down after relaxing. Mostly, I believe it was muscle pain from stress. Once the pain in my nerves settled, the throat pain went away, though it took a day or two.
Hopefully the meds he’s on will really help him. I was forced to work before I was dx’d. It was terrible trying to be nice and talkative when I was in horrible pain.
Hi CJ,
I hope the pain is getting better and he will improve. I have tongue pain but it is minor in comparison to my upper lip and nose. and cheek. I’ve had eye pain also and some strange feelings in the front of my ear that are probably related. One can have the pain in any area. How is he feeling now and has he started back to school?
Mine started with the worst headache I’ve ever had - in the temporal area. I also noticed that my scalp was extremely tender on 1/2 of my head. I was convinced that I was getting Shingles. (even though I’ve had the vaccine) I now nearly always have a dull ache in my ear and the right side of my head and frequently have what I call 1/2 of a sore throat. No tongue involvement or sore teeth or gums. Last night I experienced the stuffy nose one one side that several folks have talked about. That is weird! I feel fortunate to have been diagnosed so rapidly. I saw a P.A. for what I thought was an ear infection and early Shingles the day before the “shocks” started. The next morning, when I felt as if I was being zapped every four to five seconds I saw my primary MD who made the diagnosis. Had the MRI…just waiting for the neurologist to visit our tiny town - which will be in September.
Unless I eat before I take the Tegretol my stomach flip flops all day. Keep an eye on the rash…these meds have such side effects but I would do anything to keep that pain away.
I have to say i also had the tongue pain and also the Throat pain.Now i only have a dry mouth which i know is from the meds.I also noticed that i get pain in my teeth…About the last week and a half i have been having a throbbing in my ear (which is the same side of my TN)
I hope ur hubby is getting some relief…
Thanks for the repiles, everyone! He started feeling bad again late yesterday afternoon, and the shocks started coming back. By the time bedtime rolled around he was extremely irritable (thus in a lot of pain, I guess) and asked for a percocet before bed. He has only resorted to the percocet one other time since the doc prescribed it last week, so I knew he must have felt rotten. Sigh. He’s still sleeping (it’s 8:40 am here) and I am praying he wakes up feeling better. I started keeping a journal of his “days” as I’m curious to see if there’s a pattern.
I hope that he ended up having a good day…sorry he’s in so much pain.
CJ Bethke said:
Thanks for the repiles, everyone! He started feeling bad again late yesterday afternoon, and the shocks started coming back. By the time bedtime rolled around he was extremely irritable (thus in a lot of pain, I guess) and asked for a percocet before bed. He has only resorted to the percocet one other time since the doc prescribed it last week, so I knew he must have felt rotten. Sigh. He’s still sleeping (it’s 8:40 am here) and I am praying he wakes up feeling better. I started keeping a journal of his “days” as I’m curious to see if there’s a pattern.
CJ.
I’m sorry he is still having a rough time. Is he considering any treatment and has he had a MRI? It must be very hard to have only missed 4 days of work and then this.
Liz
He had a contrast MRI in the ER (at a mjor metro trauma center) four days before his TN was diagnosed by a neurologist. He’s been on Tegretol, and was titrated up to the max dose yesterday. He’s feeling better today, so far, though the ear pain is constant. It’s a really windy day, which is a nice break from the humidity we’ve had in Mpls. for the past 2 weeks, and he’s afraid to go outside!
Liz K. said:
CJ. I’m sorry he is still having a rough time. Is he considering any treatment and has he had a MRI? It must be very hard to have only missed 4 days of work and then this.
I’m sorry your husband is suffering, but he sure is lucky to have a caring wife like you!
I am also a teacher and am hoping and praying I can do my job this year. I was off for about two months last year. I hope he has a good year with little side effects from tegretol. Just a heads up though…I was on tegretol and all I could do was barely make it through the school day only to come home and crash for the night. I ended up having MVD surgery. It helped but I still have pain. Luckily no meds so far though. I wish you guys the best!