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 Ima Non Controversial Girl
Posts: 4168
  
Location: where the wind blows | Anyone else have this? I had my first bout in 2000, took 6 months to get diagnosed as I was apparently too you young to have it (according to dr at the time - I was 35). Anyway went into remission, then had an episode in 2005 that lasted about 2 months and I've been in remission since. Until Sunday that is. Was driving home from a horse show and it hit me like a lightning bolt. Back on dilantin since Monday and still having bouts of pain and feeling loopy from the drugs. Any one else suffer from this? Would just like to know I'm not all alone dealing with this nasty condition.
Edited by jkrm 2014-10-29 10:32 PM
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  Rebel Without a Cause
Posts: 2758
Location: Adopt a homeless pet - www.petfinder.com! | Bumping up for you. I don't have it, but do have a horse that is a headshaker which vets feel is probably from trigeminal neuralgia. He's absolutely miserable when affected. Hope you are able to find some relief and maybe someone on the board can help. |
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Blessed 
Location: Here | Yes hubby did I am so sorry this is happening Very very painful Have you talked with a neurologist? Done a food diary? Seen an oral surgeon? |
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Ima Non Controversial Girl
Posts: 4168
Location: where the wind blows | SG. - 2014-10-29 9:12 PM Yes hubby did I am so sorry this is happening Very very painful Have you talked with a neurologist? Done a food diary? Seen an oral surgeon?
Thanks. Yes it is horribly painful. I've never heard of food being a trigger other than hot and cold. That's interesting. So far my gp is trying to get it under control with meds and hopefully back into remission. If not then I will have to look at other surgical options. But it is awful. No riding these days and I could be off work for a bit as I find if I exert too much it flares up. I fully understand why it's often called suicide disease. |
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 Elite Veteran
Posts: 1035
Location: TN | The book keeper at my school just recently had surgery to correct her trigeminal neuralgia. It was brain surgery - so pretty intense - but she said she is much better and the pain/shocks are gone. The neuro-surgeon she used was in Nashville and had done hundreds of similar surgeries with good success. |
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Location: Friendswood, Texas | I have to say first that I cried just seeing the post title. I suffer from it too. On top of the brain tumor I've had two surgeries for, my neurosurgeon diagnosed me with it four years ago. I've never used the term remission because between the nerve damage from the tumor and the Trigeminal Neuralgia, I live in constant pain. I've tried Lyrica, Depakote, Gabapentin, and a myriad of other meds that usually work on others. To say, "I feel your pain" is not a flippant understatement. My best advice is to find a good neurologist. GP's are great for general medicine but you need a specialist. I pray you have relief soon. And yes, it is called the suicide disease. Living in pain is maddening. God bless you. |
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Blessed
Location: Here | jkrm - 2014-10-29 10:38 PM SG. - 2014-10-29 9:12 PM Yes hubby did I am so sorry this is happening Very very painful Have you talked with a neurologist? Done a food diary? Seen an oral surgeon? Thanks. Yes it is horribly painful. I've never heard of food being a trigger other than hot and cold. That's interesting. So far my gp is trying to get it under control with meds and hopefully back into remission. If not then I will have to look at other surgical options. But it is awful. No riding these days and I could be off work for a bit as I find if I exert too much it flares up. I fully understand why it's often called suicide disease.
There are lots of foods that can trigger nerve pain. there are meds that target nerve pain specifically. Also voltaren gel helps him |
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 Accident Prone
Posts: 22277
Location: 100 miles from Nowhere, AR | Can acupuncture help? I had the opposite problem, my trigeminal nerve was squished by a tumor so I had facial numbness. After surgery, the numbness went away, but everything tasted metallic or too salty until I started acupuncture for my facial nerve issues. I don't have pain, but I still have weird muscle spasms that feel like little electric shocks and synkenesis. Way better than it was tho. |
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 Ima Fickle Fan
Posts: 3547
Location: Texas | The lady who grooms my dog has this. She has been on Lyrica and a bunch of others. She is looking into surgery, but just from what she's described, this is a horrible condition. I am SO SORRY you are suffering from it.
If I can remember what injections she has been taking, I will pass that along. But the name is escaping me at the moment. |
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 Balance Beam and more...
Posts: 11511
Location: 31 lengths farms | I too have a head shaker horse and this was what they likened her condition to also. Prayers going out to you  |
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Ima Non Controversial Girl
Posts: 4168
Location: where the wind blows | FriendswoodKat - 2014-10-30 5:38 AM I have to say first that I cried just seeing the post title. I suffer from it too. On top of the brain tumor I've had two surgeries for, my neurosurgeon diagnosed me with it four years ago. I've never used the term remission because between the nerve damage from the tumor and the Trigeminal Neuralgia, I live in constant pain. I've tried Lyrica, Depakote, Gabapentin, and a myriad of other meds that usually work on others. To say, "I feel your pain" is not a flippant understatement. My best advice is to find a good neurologist. GP's are great for general medicine but you need a specialist. I pray you have relief soon. And yes, it is called the suicide disease. Living in pain is maddening. God bless you.
Wow, sounds like you have things really bad if you are dealing with a tumour as well. I won't hesitate to try surgery if it comes to that as living with constant pain isn't fun. The most frustrating is at times I'm thinking I'm crazy or wimpy and maybe it's just a tooth, but then I remind myself I have had wisdom teeth pulled, molar pulled and a root canal in another all trying to fix this pain. The pain then just moves on to the next tooth. I'm on Dilantin (400mg/day) right now. The pain is tolerable the last couple days but that is provided I don't do a lot. I can't go outside as cool air bothers me and I can't exert too much. So just hanging out in the house bored to tears. I should be doing farm books but find my brain is too foggy to concentrate on that. If things don't get better by Monday I'll head back to the Dr..
I have tried accupuncture last time I had this and found it didn't help. Sorry just bored and venting. |
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