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Old 09-18-2016, 10:27 AM #1
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Default Trigeminal Neuralgia

I'm going to have the entire alphabet soon with all the "letter diseases" I'm dealing with.

TN is not something I'd wish on my worst enemy.

This is my second round with it. I don't know if it ever really goes away but the symptoms of it have come back and this time it seems worse.

It feels like an electric shock being sent through my right eye. And this time it's involving the right side of my nose and my teeth on the upper right side of my mouth. After the electric shock there's the ice pick being plunged into my face around my nose and mouth area. Not fun.

I jumped so hard this morning when it struck that I dropped the spoon I was fixing my coffee with and nearly knocked over the cup. The pain is unbelievable. I can't rub my right eye, scratch my nose, wash that side of my face, brush my teeth on the right side of my mouth (I've improvised by using my finger as a toothbrush on the upper right side but it still triggers the pain), or stand facing the shower stream as those little sprays of water hitting my face are enough to make me collapse.

I had Bells Palsy a few months after my dx of MS in 2005 and it lasted about 6 months. My Neuro at that time said there was no relation to MS....it was just coincidental that I got it at the same time. Looking back I don't believe that was true. I have no paralysis this time (yet) but at this time nothing would really surprise me.

Has anyone else dealt with TN along with MS?
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Old 09-18-2016, 11:44 AM #2
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I'm so sorry, TN really sucks!!

Yes, I have dealt with it. In fact, mine has started mild this time, but it's definitely coming back!

Does your neurologist put you on any medication for it or do you just have to deal with it?

My neurologist puts me on carbamazepine, it really helps. I am going to call my neurologist on Monday if this keeps up and ask for a new prescription.

There is no way I could cope with the pain at it's worst without medication. It gets so bad all I can do is curl up in the fetal position and cry.

I hope you find relief very soon, this one is hard to deal with! Gentle
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Old 09-18-2016, 11:50 AM #3
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I have an appointment on Wednesday to see the Neuro. I know it's just three days away but it seems like forever with this pain!

I hope he will give me something. Right now I'm taking Advil and also Baclofen. It seems to have quieted it for a bit. I need to take a shower but I'm scared to!!
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Old 09-18-2016, 12:44 PM #4
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Three days is a long time to wait in that kind of pain. Could you call and ask them to do something for you before the appointment?

Yeah, I need to shower as well, but I just don't have the strength.
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Old 09-18-2016, 06:24 PM #5
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Quote:
Originally Posted by nemsmom View Post
Three days is a long time to wait in that kind of pain. Could you call and ask them to do something for you before the appointment?

Yeah, I need to shower as well, but I just don't have the strength.
I called the after hours number for my Neuro. Just couldn't take the pain any longer. For any men reading this......I will birth a baby with no meds before having this again!

The doctor that called me back was so sweet. I could tell she was sympathetic and she called in a prescription for Tegretol for me. My DIL is picking it up right now.

I tried so hard not to cry because I can't blow my nose (my head might explode or at least it will feel like) or wipe my eyes. I look a sight!

I hope you feel better!
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Old 09-18-2016, 07:12 PM #6
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I had mild TN back before I knew it was a symptom of anything. I thought I was having the worst toothache ever, but the dentist couldn't find anything and suggested it could be something medical. I remember thinking if that was "mild", I wouldn't survive the regular kind. You're in my prayers.
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Old 09-19-2016, 10:05 AM #7
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Quote:
Originally Posted by Blessings2You View Post
I had mild TN back before I knew it was a symptom of anything. I thought I was having the worst toothache ever, but the dentist couldn't find anything and suggested it could be something medical. I remember thinking if that was "mild", I wouldn't survive the regular kind. You're in my prayers.
Thanks.

This Tegretol is a miracle drug. Anyone tries to come between me and it will be surprised at what I can still do!!

Chewing and talking still cause the zaps to occur so I'm very quietly fasting.

Heck of a way to lose weight but if I do then at least something positive will come from this.
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Old 09-19-2016, 11:06 AM #8
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I've only had it a couple of times and both times were mild compared to what you and others have experienced. I still get shooting nerve pain from time to time, but, again, nothing compared to what you are experiencing. What you describe though is exactly what I get when I have the hug. So, instead of the face, it's my rib cage as well as the muscle spasms in my ribs.

I am glad that you called the on-call doctor and got something to help with the pain. I am also glad that what she prescribed is working well for you. It's funny how seizure meds can work for nerve pain. I hope you start feeling better soon.
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Old 09-19-2016, 11:39 AM #9
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I tried to reply last night bot every time I tried to click reply it just wanted to copy it, grr.

I'm glad you got the meds and they're helping! TN is no joke, so happy for some relief, but if it's not enough they can up your dose to get you all the way out of pain.

I don't know about you, but for me pureed foods were okay when I hurt so bad, because I didn't have to chew.

Hopefully you can get even more relief very soon.
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Old 09-20-2016, 06:14 PM #10
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my sister had gamma knife surgery done at the Cleveland clinic (ohio] done nearly 20 yrs ago for her trigeminal neuralgia, and it hasn't returned as of today ........ this was after several years of taking tegretol which also lessened the pain.....I am sorry for your pain, my sister told me how horrible it is.......by the way my sister doesn't have ms
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