Ask For Advice
Page 1 of 37 1234 ... LastLast
Results 1 to 10 of 363

Thread: trigeminal neuralgia?

  1. #1
    ~Seraphim ~
    Forum Supporter ~Seraphim ~'s Avatar
    Join Date
    Jul 2006
    Location
    Out of suffering have emerged the strongest souls; the most massive characters are seared
    Age
    50
    Posts
    31,632
    Gender
    Female
    Thanked
    5269

    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
    Super Moderator HeartGoesOn's Avatar
    Join Date
    Jan 2007
    Location
    Massachusetts
    Posts
    15,439
    Gender
    Female
    Thanked
    3699
    That's extremely painful, Vic. Is the affected area in your jaw, or higher up?

    Take care, and I hope the meds help.

  3. Thanks ~Seraphim ~ thanked for this post
  4. #3
    ~Seraphim ~
    Forum Supporter ~Seraphim ~'s Avatar
    Join Date
    Jul 2006
    Location
    Out of suffering have emerged the strongest souls; the most massive characters are seared
    Age
    50
    Posts
    31,632
    Gender
    Female
    Thanked
    5269
    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
    Platinum Member sara-pezzini's Avatar
    Join Date
    May 2005
    Location
    europe
    Age
    44
    Posts
    3,284
    Gender
    Female
    Thanked
    882
    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!

  6. Thanks ~Seraphim ~, chitown9 thanked for this post
  7. #5
    ParisPaulette
    Platinum Member
    Join Date
    Jun 2011
    Posts
    12,083
    Thanked
    6783
    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.

  8. Thanks ~Seraphim ~ thanked for this post
  9. #6
    tiredofvampires
    Forum Supporter tiredofvampires's Avatar
    Join Date
    Apr 2007
    Location
    In this world but not of it
    Age
    49
    Posts
    7,900
    Gender
    Female
    Thanked
    1014
    (((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...

  10. Thanks ~Seraphim ~ thanked for this post
  11. #7
    shellyf62
    Platinum Member shellyf62's Avatar
    Join Date
    Oct 2012
    Location
    Sydney Australia
    Posts
    2,678
    Gender
    Female
    Thanked
    820
    Sorry to hear you are in so much pain! I hope you feel better soon ...

  12. Thanks ~Seraphim ~ thanked for this post
  13. #8
    ~Seraphim ~
    Forum Supporter ~Seraphim ~'s Avatar
    Join Date
    Jul 2006
    Location
    Out of suffering have emerged the strongest souls; the most massive characters are seared
    Age
    50
    Posts
    31,632
    Gender
    Female
    Thanked
    5269
    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 ~
    Forum Supporter ~Seraphim ~'s Avatar
    Join Date
    Jul 2006
    Location
    Out of suffering have emerged the strongest souls; the most massive characters are seared
    Age
    50
    Posts
    31,632
    Gender
    Female
    Thanked
    5269
    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 ~
    Forum Supporter ~Seraphim ~'s Avatar
    Join Date
    Jul 2006
    Location
    Out of suffering have emerged the strongest souls; the most massive characters are seared
    Age
    50
    Posts
    31,632
    Gender
    Female
    Thanked
    5269
    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.

  16.  

Page 1 of 37 1234 ... LastLast
Top Threads
Feeling conflicted about this man
So there's this guy I used to talk to. Long story short it did not end well. The last thing he told me was "we do not need to speak" (which I thought
Mirena coil / "womb cancer"
I've had a Mirena coil fitted for 2 years and have suffered negative side effects ever since day 1. It just never really settled. I then had
Day after neck disc replacement
Yesterday I had surgery or a herniated disc in my neck. I was up and walking right afterward.. Meaning I walked to the bathroom. So this is my
Knee problems
I've never had this occur before but for the past couple days my knee hurts something awful when I try to bend it. It's pretty stiff at other times
T2 Diabetes
I am a T2 diabetic and am looking for others who are also T2 diabetics to chat with with and exchange tips with.
Hypopituitarism
I was wondering if there is anyone out there with this condition. I have been diagnosed four years ago and would like to communicate with someone

Expert Advice
Featured Threads
I love you, but I'm not in love with you.
So my fiancÚ of 7.5 years has decided she isn't in love with me anymore so has broken up with me. Our situation is very complicated we have a 2.5
How far should I go with unfriending/blocking on social media?
Hi all, I'm going hard no contact. She originally unfriended me on Snap and Twitter. I recently unfriended her on FB and IG. I also went a step
missing atm
I think what I miss at the moment is having a friend to talk to like we used to. She became the only person I really talked to for the better part
Mum boyfriend inapropriate
Hi everyone, thought i would share an update on whats happened so far. Thankyou all for helping me out yesterday, everything you all said was really
Girlfriend always mad at me
Me and my girlfriend have been togetehr for almost a year. I love her more than anything and i know shes not cheating on me or anything like that
I [F/26] found underwear in my boyfriend's [M/30] pocket.
I've been with my boyfriend for over a year. Recently, my boyfriend asked me to look for some money, so I looked everywhere and I couldn't find it. I
Ex gf text me out of the blue
I guess I just want some feedback and honest replies as my head is completely gone again. Me and my ex gf have been in no contact for a few months
Ask For Advice

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •