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Thread: trigeminal neuralgia?

  1. #1
    ~Seraphim ~
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    trigeminal neuralgia?

    So I went to the hospital at 2:30 AM. They gave me a 30mg shot of Toradol. That only reduced it a bit. They sent me home. I took 2 Tylenol 1 and got in bed at 5:45. I woke up before 7:30 screaming in pain. My husband took me back to the hospital. This time it was another dr. He said he is sure I have Trigeminal Neuralgia and gave me another shot of Toradol 60mg. He gave me 200 mg of carbamazepine . I have to take 400 mg a day. It is an anti seizure medication that will relax the nerve. And he have me hydromorhone 2 mg for pain. They have me lined up to see a specialist.

    Sorry I am not making much sense I am taking 2 medications which make you very very sleepy and confused.

  2. #2
    HeartGoesOn
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    That's extremely painful, Vic. Is the affected area in your jaw, or higher up?

    Take care, and I hope the meds help.

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    ~Seraphim ~
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    Quote Originally Posted by HeartGoesOn [Register to see the link]
    That's extremely painful, Vic. Is the affected area in your jaw, or higher up?

    Take care, and I hope the meds help.
    It is my lower jaw on my right side . The pain was so bad I wanted to bang my head on the floor until I was unconscious . I was absolutely bawling at the hospital which was really embarrassing because I mean I didn't bawl when I had a baby I didn't let out one tear.

    Right now they have me on anti-seizure medication which will block the nerve pain . And for the breakthrough pain until I can see the specialist they have given me a very heavy narcotic .

    I must say though I'm terrified to be this way for the rest of my life .

  5. #4
    sara-pezzini
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    Are they going to follow up and do more research?
    They usually do an mri with tn to exclude things.
    Like they did with me and found the cause was a tumor, but that's extremely rare.
    If this is it there are options, you need to find someone specialized in tn
    The gamma knife procedure that i had is one option
    Cutting the nerve is another
    Also a janetta surgery is the most common procedure that they typically like to try first
    You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

    You know i feel for you, i know what is like and tn is hell!
    Is not called the suicide disease for nothing!
    I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to
    So I'm no real help here haha
    You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

    You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.
    I wouldn't eat for days at first but you can't keep that up

    Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there
    Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it
    Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.
    Some benefit from cold or rather warmth, it's a bit try and see
    For me cold helps somewhat.

    I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

    Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

    Oh yeah, try to sleep obviously on the other side of your face!

    It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

    But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

    Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help
    But yes you want to bang your head until unconscious, i know

    Hugs, take care!

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    ParisPaulette
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    Oh Vic, super hugs. I'm so sorry you're going through this. My mother has it with her jaw on her right side thanks in part of a somewhat botched operation on one of her ears 20 years ago. Please yes, work with your doctor to find what works for you, what could be the cause etc. My mom went through a few different treatments before her neurologist finally found one, Nuerontin, that works and doesn't react with the other medicines she's taking. But I'm not sure what will work with you, so just time to explore the options.

    I'm so sorry, it's not a thing I would wish on anyone. And yes, my mother has a high pain tolerance and the only time I've ever seen her cry is during one of these episodes.

    All I can tell you is make sure you have a great neurologist in your corner who understands the issue. You're in my prayers, I hope you get this sorted out.

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  9. #6
    tiredofvampires
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    (((HUGS))) Vic...I'm so sorry you're dealing with this. I know this must feel like a nightmare.

    I really am interested to know why that came on suddenly (?) for you...what's the cause of it.

    I hope the meds will relieve you...

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  11. #7
    shellyf62
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    Sorry to hear you are in so much pain! I hope you feel better soon ...

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  13. #8
    ~Seraphim ~
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    Quote Originally Posted by sara-pezzini [Register to see the link]
    Are they going to follow up and do more research?
    They usually do an mri with tn to exclude things.
    Like they did with me and found the cause was a tumor, but that's extremely rare.
    If this is it there are options, you need to find someone specialized in tn
    The gamma knife procedure that i had is one option
    Cutting the nerve is another
    Also a janetta surgery is the most common procedure that they typically like to try first
    You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

    You know i feel for you, i know what is like and tn is hell!
    Is not called the suicide disease for nothing!
    I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to
    So I'm no real help here haha
    You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

    You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.
    I wouldn't eat for days at first but you can't keep that up

    Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there
    Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it
    Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.
    Some benefit from cold or rather warmth, it's a bit try and see
    For me cold helps somewhat.

    I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

    Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

    Oh yeah, try to sleep obviously on the other side of your face!

    It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

    But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

    Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help
    But yes you want to bang your head until unconscious, i know

    Hugs, take care!
    I am waiting for the specialist to call me, today or tomorrow. The second ER felt there was no need to make me suffer until I saw the specialist and just started me on the meds.

    Thanks for the good tips.

    I thought it was my teeth too but I do take good care of them and see the dentist regularly. So I doubt it is that. The pain is entirely too much for that . And it originates in the back of my skull and around the face . They say it usually starts from a misplaced blood vessel which presses on the nerve and eventually wears out the protective coating on the nerve and damages it. And it usually happens in middle age.

    I just took my first carbamazepine for today when I woke up in hopes I can eat today. Today is my second day of the medication. I got three mouthfuls of my dinner down last night which made me bawl in agony . But you can't not eat. And they tell you not to take these pills without food. L ol what? Everything that I'm going to drink I use a straw with and get it in the far left side of my mouth.

    A hot bath seems to help. I rest my face in the super hot water.

    I can handle the 400 mg without the hydromorhone . I could probably handle an increase too but no narcotics. I just want a life where I can have fun and work and do the things I do. I can't not work.

  14. #9
    ~Seraphim ~
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    Quote Originally Posted by sara-pezzini [Register to see the link]
    Are they going to follow up and do more research?
    They usually do an mri with tn to exclude things.
    Like they did with me and found the cause was a tumor, but that's extremely rare.
    If this is it there are options, you need to find someone specialized in tn
    The gamma knife procedure that i had is one option
    Cutting the nerve is another
    Also a janetta surgery is the most common procedure that they typically like to try first
    You now started on carbamazepine, that dosage can go way up, the side effects are no fun but it does help, or at least it should!

    You know i feel for you, i know what is like and tn is hell!
    Is not called the suicide disease for nothing!
    I'm in the same boat with you with all the uncertainties, if i have this the rest of my life i don't want to
    So I'm no real help here haha
    You know there are also creams that tired of vampires suggested to me, i tried one and it did zero but that's always an avenue to explore.

    You get creative, i couldn't eat at all, people don't realize that it's impossible to eat soup from a spoon since it requires a movement from your mouth that it can't, so i found that drinking porridge and soup from a glass works and helps you get something down.
    I wouldn't eat for days at first but you can't keep that up

    Get a good mouthwash, one a dentist can recommend, for when it's too painful to brush, in order to keep things clean there
    Can you sleep? Take naps as much as you can, try to avoid stress cause that aggravates it
    Put a shawl on when you go outside cause wind can cause an attack, with me it doesn't, but it happens a lot.
    Some benefit from cold or rather warmth, it's a bit try and see
    For me cold helps somewhat.

    I assume talking is hell as well, so avoid doing that too much as well, just wait till the carbamazepine kicks in, you'll feel great then!

    Don't panic too much just yet, there are a lot of meds they can try, and when you take them for a while you're body gets used to the side effects.

    Oh yeah, try to sleep obviously on the other side of your face!

    It's hell, i know it is, and it's scary and you can always talk to me, if you want to, in private or simply on here.

    But first try to get all the facts, get a follow up, do an mri, if they don't plan to, insist please! And find a tn specialist, he can tell you much more.

    Btw the banging with your head is familiar, i used to brush my teeth banging my hand against a wall so that i would feel that and not that pain in my mouth. Didn't help
    But yes you want to bang your head until unconscious, i know

    Hugs, take care!
    You are right yesterday I was panicked . I cried most of the day. I had 2 really bad panic attacks. Both the dr and the pharmacist said I could take my Klonopin as well. The dose is so small and if it controls my anxiety take it. This morning is already 1 billion times better than yesterday morning.

  15. #10
    ~Seraphim ~
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    Quote Originally Posted by ParisPaulette [Register to see the link]
    Oh Vic, super hugs. I'm so sorry you're going through this. My mother has it with her jaw on her right side thanks in part of a somewhat botched operation on one of her ears 20 years ago. Please yes, work with your doctor to find what works for you, what could be the cause etc. My mom went through a few different treatments before her neurologist finally found one, Nuerontin, that works and doesn't react with the other medicines she's taking. But I'm not sure what will work with you, so just time to explore the options.

    I'm so sorry, it's not a thing I would wish on anyone. And yes, my mother has a high pain tolerance and the only time I've ever seen her cry is during one of these episodes.

    All I can tell you is make sure you have a great neurologist in your corner who understands the issue. You're in my prayers, I hope you get this sorted out.
    Yes, I hope I can find a great neurologist a might have to go to another city to do that . Right now I can't drive a tricycle let alone my car. Lol. Today my husband took the day off because my son needs help with something and I can't take him. I took this week off work.

    I am sorry about your mom.
    Last edited by ~Seraphim ~; 04-25-2016 at 07:51 AM.

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