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Old 12-06-2012, 11:01 PM   #1
snarlingcoyote
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Anyone Have Trigemenial Neuralgia?

I do; I'd never even heard of it before I found out I had it, and I've never met anyone else who had it. Well, I haven't met them when I've known they had it. Apparently there was a doctor's wife in my small hometown who had it, but, while she was a dear friend of my mother's, by the time I knew her she was an (understandably) reclusive person, so I only met her a few times.

I've been on the TNA boards, but I feel so guilty afterwards - mine is pretty managable. I've discovered that if I eat ketogenically, I don't have pain problems unless one of two specific triggers for pain is involved. (I thought about talking to my doctor about seizure meds, which I hear can work - if this diet works, the meds would likely work, but as DH has pointed out, my diet doesn't have any side effects other than me whining about not being able to eat a donut or a yeast roll.)

Anyway, I'm feeling very alone and very sorry for myself right now because I am going to have all my wisdom teeth out and I know I will be in for a week or two of horrible pain afterwards, even if I'm so far into ketosis that I have to watch that I'm not going into ketoacidosis. I'd just like to have some normal person say "yeah, I have it too and I manage, and yeah, it SUCKS big time."

Anyone?

Bueller?
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Old 12-12-2012, 12:27 AM   #2
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I deal with this as well. When I first developed it, it was excruciating. I get why they call it a suicide disease. Thankfully mine subsided but it still rears it's ugly head every now and then, but never as severe as when it first developed. I don't have an tips or tricks to share, it's just something I deal with, like so many other issues I have. I do take neurontin and that does seem to help keep it bay some. I think it's been about 5 years now since it has hit.

Hope all goes well with the wisdom teeth.
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Old 12-27-2012, 10:02 PM   #3
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I too have it...my mother also had it.....i notice that if the pain starts sometimes if i take an Allegra that helps...
i have also taken Nuerontin and that works well and i have no side effects from the meds.
It is suppose to be the most severe of any pain..i have read there is surgery to deaden the nerve but it is quite extensive ....
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Old 02-03-2013, 04:11 PM   #4
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Hi ya'll! I'm sorry this is so late. . .I thought my thread had fallen off the face of the map and didn't check back again :-).

My dentist has several patients with TN, so he sent me to an oral surgeon who's operated on many people with TN. Oral surgeon said he would numb my face from nose to neck - which he did - and would be exceedingly careful when working to avoid touching any nerves.

I had an easy time, pretty much. Today is the first day the TN has kicked up and bothered me, but I ate carbs Friday and Saturday night, so it's my own fault.

People kept asking me didn't I hurt and telling me their horror stories at work all week. . .I'm like, yeah, it hurts, but not bad enough to cry or take enough hydrocodone to knock myself out, sooooo. . .here I am at work, big deal. I think my pain threshold is completely different than what it used to be and different from most people's now!

Do ya'll have the face heating pads? I have two; one has the digital display, so I have to reset it every so often. The other has the thumb switch - I used duck tape so I don't have to hold it. I didn't know they existed until recently, but I love mine. The surgeon also gave me a face ice pack wrap, which I had never seen. OH MY! I am in love. Wrap that sucker around my face and good times!
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Old 02-04-2013, 09:11 AM   #5
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My sister AND my husband have just recently been diagnosed with it. Both were given the anti-seizure meds right away.
My dh is doing so much better, no pain, but the meds make him sleepy. I told him to tell his boss, so that he doesn't get in trouble if the boss walks in his office and finds him asleep!
My sister ended up in the hospital due to side effects with the meds, dehydration, and to get her pain under control. She is doing better, but still not back to normal yet.
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Old 02-04-2013, 06:26 PM   #6
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Quote:
Originally Posted by Earstou View Post
My sister AND my husband have just recently been diagnosed with it. Both were given the anti-seizure meds right away.
My dh is doing so much better, no pain, but the meds make him sleepy. I told him to tell his boss, so that he doesn't get in trouble if the boss walks in his office and finds him asleep!
My sister ended up in the hospital due to side effects with the meds, dehydration, and to get her pain under control. She is doing better, but still not back to normal yet.
You can also file for FMLA on Trigeminal Neuralgia. You don't have to take FMLA consecutively or use it all every year, but it's good to know if necessary you can take time off (without pay, but still).

My DF has a neuropathy condition and was given seizure meds a few weeks ago. He told me he understands now why I won't use them - he won't either now! He's thinking about trying my keto diet to see if it helps.

And to have 2 people in your immediate family with it. Wow. G'Luck to all of you!
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Old 03-01-2013, 06:22 PM   #7
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Hi! I don't have TN, but my best friend does. There's a really good Facebook group for TN sufferers. Here's the link if you'd like to check it out. My friend suffers with hers something awful, but she has found some comfort in connecting with other people that understands what she goes through. Please let me know if my link doesn't work!

http://www.facebook.com/groups/184086478397607/
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Old 10-24-2013, 03:41 PM   #8
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Quote:
Originally Posted by snarlingcoyote View Post
I do; I'd never even heard of it before I found out I had it, and I've never met anyone else who had it. Well, I haven't met them when I've known they had it. Apparently there was a doctor's wife in my small hometown who had it, but, while she was a dear friend of my mother's, by the time I knew her she was an (understandably) reclusive person, so I only met her a few times.

I've been on the TNA boards, but I feel so guilty afterwards - mine is pretty managable. I've discovered that if I eat ketogenically, I don't have pain problems unless one of two specific triggers for pain is involved. (I thought about talking to my doctor about seizure meds, which I hear can work - if this diet works, the meds would likely work, but as DH has pointed out, my diet doesn't have any side effects other than me whining about not being able to eat a donut or a yeast roll.)

Anyway, I'm feeling very alone and very sorry for myself right now because I am going to have all my wisdom teeth out and I know I will be in for a week or two of horrible pain afterwards, even if I'm so far into ketosis that I have to watch that I'm not going into ketoacidosis. I'd just like to have some normal person say "yeah, I have it too and I manage, and yeah, it SUCKS big time."

Anyone?

Bueller?
Sorry to hear you are going through this. The two people I know that had it took fibromyalgia medication such as Lyrica. It seemed to help. One eventually had surgery to help it.
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