Trigeminal Neuralgia

[Day]

:DHello to all,

This is my first time to ask a question. I sure hope someone has some encouragement for me out there in cyberspace.

I have been recovering at a fast pace since my two surgeries this summer. However, high levels of anxiety, positional vertigo, and as of today a new diagnosis "Trigeminal Neuralgia" keep me wondering how much a person can go through and maintain their sanity . Trigeminal Neuralgis or TN is a fancy word for unbelievable pain on the right side of my skull, ear, and gum line. You could draw a line right down the middle of my face and that is exactly where the battle line is drawn !

I still struggle with gait, nureopathy in lower legs with some swelling, pain and weakness in shoulder and lower neck (incision site), and of course don't forget the unexpected wicked muscle spasms that can run from my shoulders down to my calf on the right side. OK I'm finished whining.

Back to question. Has anyone else out there been diagnosed with trigeminal neuralgia? If so what has worked for you.
I've just been started on 100mg tegretol 2x a day for neuro pain in face, and .25mg xanax 3x a day for axiety (which could be causing or agrivating the TN). Doc couldn't say for sure whether my changing spinal cord was to blame for this new diagnosis or not.

Any one ?
Praying for a speedy recovery for all of you!
Day

[cindylee]

Hi Day..glad to hear that your surgeries went well and you are recovering nicely from them.

As for the TM, well that is a pain I would not want even my enemies to have. My Mom got this on my birthday one year. Off we went to the ER because the pain was so bad it shot her blood pressure up and they thought she was having a heart attack...you know that severe jaw pain. They only gave her xanax to keep her calm and vicodin for the pain. Neither one did much good. We suffered throughout the weekend with this. All they could tell us was that some people get this and have to have surgery to cut the nerve endings. Some people are able to live with it if it lasts for awhile by taking meds. And some people only have sporadic epidsodes of it. The very lucky ones have it once and it goes away. They thought maybe my Mom's arthritis in her spine had caused some nerves somehow to be pinched up into her neck or head. Or maybe it was part of a migraine. Or it could have been related somehow to her legs because of the arthritis there. Well, my Mom being from the old school remembered that when kids in her family were little,and had a toothache, her parents would get a dish towel, pour some salt in it, tie the towel into a small ball, take out a pan and heat it on the stove and heat the salt ball up. Then they would place it on the tootache area. Well Mom tried this on her nerve hot spots and it worked. Not right away, but it took most of a Saturday night to calm it down. The only thing we could think of is that maybe she had an infection somewhere or a cold and it settled in her jaw. Salt is supposed to draw out infection no matter where it is according to all those old wives tales. Or maybe all that heat just calmed the nerves down. But I remember wincing with her pain because she would be fine one minute and the next a pain would just shoot through so severe it made her cry out. I don't know if this would work for you, but when you are in pain anything is worth trying. Please let us know how things are going for you with the TN. I send an extra hug your way, the kind of pain from this thing is just horrible. Cindy

[throeback]

Day...... first off, hang in there!!! It Is still VERY early in your recovery from this surgery of surgery's. You have lots of healing to do at the cellular level. You can do this thing! When you threw up the words TRIGEMAL NEURALGIA, my first impression was "THIS COULD NOT BE GOOD the name of the condition itself looks wicked!!!" I wish I could give you some advise on this one but I simply can't.... Hell I can barely pronounce it.

Try drinking tonic water with quinine for the muscle spasms..... this worked great for me. I know sounds too simple...." just do it "as Nike says. The healing process from this surgery is no cake walk, it takes a person with guts and fortitude to prevail. Never give up!

How long after your tumor resection did it take for these symptoms to set in? Is the pain constant? Have you tried chopping your head off and carrying it around...... you know Halloween is right around the corner.... it could be a good look for you..... one hand holding your cane one hand holding your head. Or I know.... what if you just replace it with a pumpkin? You could change your smile and everything with a new pumpkin head. Think of the endless tooth possibilities. I like pointed teeth, you may like square ones across the bottom only look. You know slightly offset teeth with a touch of comical whimsy. Let us know. Be well Day.

Have a great weekend, peace out peps.................Throeback...............

[bethann]

Day,

I am sorry to hear you are in such pain. Trigeminal Neuralgia sounds like such a hard thing to deal with. I hope you are able to find relief!

Throeback, I did not know about Tonic water being used for muscle spasims.... I do find it helps me when I add Gin and a little Roses Lime Juice

Beth

[Day]

Evidently...one of the side effects of being a SCT survivor is crazy humor! Thanks for the laughs...I needed it....even though it hurts to laugh!

Fortunate for me this new facial pain comes and goes (sort of). First started happening while I was still in Physical Rehab soooo about 3 wks after surgery. It didn't start really kicking into gear until about the third month after surgery. Last night thru the tears I was able to Google some info on it....first I tried an ice pack (wrong)....then I tried nuking a wet wash cloth ( too hot, then to cold)....then finally I filled a clean sock with uncooked pinto beans, tied the end, nuked for about 50 seconds and RELIEF! My "Bean Bag" is my new best friend. I was able to get some sleep, and keep symptoms to a minimum today!

Thanks so much for all the advice.
Cindylee, I didn't try the salt thing...out of salt...but the heat really was soothing even though it's not a quick fix.

Throeback...what a name...I'm glad I didn't read your post earlier....I just might have tried that headless rider thing...I by the way I prefer straight missing teeth and a smile on my pumpkins!

Bethann thanks for the sympathy!

Thank to all for listening!
Day

[throeback]

Day, I tell you what..... If the punkin and total gross resection of your head is not enough go the route of Joseph Conrad's HEART OF DARKNESS and just skewer your noggin to the end of your walking cane. Ya baby thats the ticket. ONE LAST THING..... consider this as fair warning I had better not see ANY of these befuddled yet dazzling brilliant ideas come to life on the Jerry Springer show. If'n I do I'm gonna be looking you up DAY!!!! and I will find you DAY. (insert sarcastic tone here)So you best lay low and do what the docs tell you to, they've brought you this far have they NOT!

Chill and stay focused on that which is positive.......Throeback.......

[Anna]

Hi, I'm sorry to read you too suffer from TN. My daughter is 11 and was dx when she was 4 . Since before dx she would have these "prick" feelings near her mouth and nose and it got worse over time. A few years after dx I realized what she was suffering from and she as put on Neurontin. She been on Neurontin for 3 years and it has been a savior. It occassinally goes on vacation and for some reason doesn't work but fortunatley it's rare. We had to increase her dose a few times to get at a theurapeutic level. A dr can also go in and deaden the nerve but they told us since she's young and the Neurontin works they'd rather not do that. My daughter was dx with a brainstem(medulla)cervical cord tumor. Of all the procedures and treatments she's went thru (13 surgeries, 2 different chemotherapy protocols, and radiation) when she gets a TN attack it's the worse of all. Best of luck and I'm always praying for a cure.

[Ali-Brad]

Hi,

I'm not an expert on TN but I did watch an English program recently, conducted at the Bristol hospital. A young woman had suffered from TN for years. Her surgery worked immediately and she was pain free for the 1st time. When they did scans pre-op they found that her Trigeminal nerve had become too close to a blood vessel in the jaw. They didn't have to cut the nerve, simply 'shift it' a little and secure it. She was painfree after that. It was something to do with the nerve being aggrevated by the circulation in the blood vessel. They should scan you to see if there is anything rested against the nerve, trapping it.

It is an awful pain.

Alison

[Day]

Anna,

I can't imagine a child having to endure this. Wow.

Yes I have read about the surgery...guess I'm just a little gun shy after this summers fun. However, a few more weeks of this TN stuff and I just might change my mind!

Thanks and Blessings to everyone! ;D
Day