Trigeminal Neuralgia
 

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

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. :rolleyes:

Has anyone else dealt with TN along with MS?

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 :hug:

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!! :o

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.:rolleyes:

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!

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.

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.:hug::hug:

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.

response to tn
 

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

My neuro says my TN is not typical but to keep taking the Tegretol as needed.

It's gotten worse this past week and I've been taking the maximum dose. Makes me tired and even more off balance than I already am but I'll take it over the electric shock pain.

I have to eat only on the left side of my mouth and make sure my teeth on the right side don't touch. Makes for l-o-n-g mealtimes. :rolleyes:

And forget using a straw. Any pulling I do with the muscles around my mouth sets it off big time. I have to drink very slowly on the left corner of my mouth.

Can't rub the right side of my nose or the right corner of my mouth without setting off fireworks of shocks that literally bring me to my knees. I am just soooo tired of all this.

And now I have another issue.....plantar fasciatis in my right foot. The whole right side of my body is messed up! Yet I just had an MRI and it was unchanged from the last one I had and no new lesions!! Wish I could be a little more excited about that. :Sigh:

Kitty,
I'm so sorry you are dealing with so much without even a break. I hope these upcoming appointments will resolve these issues and give you relief.

Gerry

Thank you, Gerry. It's been consistently one thing after another since the first of August. I'm tired.............

I have an old friend with MS and TN. She has had the surgery twice in the past but I think hers is still pretty bad. She no longer posts online though. She took Tegretol for hers too. Sometimes she would stop taking it because of the side effects but would start again when it flared up again. I hope this will subside for you soon. :hug:

Thanks, Wiz. I called my neuro and he increased the Tegretol to 3 pills (150 mg) twice a day. I hope it works.

It hurts to eat now even on the left side. Sometimes when I talk it hurts.

Wish I knew what causes it to flare up.