Locked jaw

laurabeau
laurabeau Member Posts: 40
in Head and Neck Cancer #1

Has anyone experienced a seizure after their jaw has locked up?  Husband drinks a lot of water and drinking ensure after his jaw lockec up but sodium level dropped and caused a seizure. 

 

laurabeau

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    No....Just wanted to say sorry.

    I haven't heard of that but just wanted to say I am sory to hear that. My sister-in-law had her jaw lock from laughing and it was pritty painful.

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi laurabeau

     

    I have very bad spasms in the Jaw and right under the jaw in the neck and tongue. It makes everything lock up and gives me very bad pain, when it stops I am not able to talk for a while. Hurts like hell and not able to find any doctor or ENT that can help or do anything about it.

     

    Hondo   

  • Sailor123
    Sailor123 Member Posts: 97
    #4
    Did you know an ounce of

    Did you know an ounce of pickle juice a day for one week will bring sodium levels to normal with no side effects?

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    lauren, no, but i'm so sorry

    lauren, no, but i'm so sorry your hubby is facing this.  how awful.  I am certainly praying it doesn't happen any more and that the jaw lock-ups stop as well.  did you ask his doc about this?  did he know if this has happened in other patients?  do he have any idea why this happened?  I sure hope you get some answers.

    God bless you both,

    dj

  • laurabeau
    laurabeau Member Posts: 40
    #6
    debbiejeanne said:

    lauren, no, but i'm so sorry

    lauren, no, but i'm so sorry your hubby is facing this.  how awful.  I am certainly praying it doesn't happen any more and that the jaw lock-ups stop as well.  did you ask his doc about this?  did he know if this has happened in other patients?  do he have any idea why this happened?  I sure hope you get some answers.

    God bless you both,

    dj

    Lock jaw reason

    We do know why it locked up. It was due to the 6 weeks of radiation and three surgeries caused scar tissue to lock it. 

    There is no surgery that can fix it, just mild stretching 30 minutes a day three times a day. The pain is intense at times. 

    laurabeau

  • laurabeau
    laurabeau Member Posts: 40
    #7
    Sailor123 said:

    Did you know an ounce of

    Did you know an ounce of pickle juice a day for one week will bring sodium levels to normal with no side effects?

    Hard headed

     

    My husband despises pickles or pickle juice so he will continue to sprinkle salt lol. Thank u for your suggestion! 

    laurabeau

  • laurabeau
    laurabeau Member Posts: 40
    #8
    Hondo said:

    Hi laurabeau

     

    I have very bad spasms in the Jaw and right under the jaw in the neck and tongue. It makes everything lock up and gives me very bad pain, when it stops I am not able to talk for a while. Hurts like hell and not able to find any doctor or ENT that can help or do anything about it.

     

    Hondo   

    Jaw spasms

    Yes, my husband knows all too well about the haw spasms as well as opening the mouth too wide when trying to eat even soup!

    i did get the name of a relatively new NSAIDs with a buffer for the stomach . It helps when you don't want to go the Narco way! Picked up samples today. It is called Duexis(famotidine/ibupropen) 800 mg. it might help u with the inflmmation and pain. It may not help at all if the price is too much when we get the prescription!

    we go to ENT next month. If they have come up with something new I will pass it along. Really isn't many answers out there on that subject just explanation of what Trismus is!

     

    laurabeau

  • IAmStrong
    IAmStrong Member Posts: 58
    #9
    Hondo said:

    Hi laurabeau

     

    I have very bad spasms in the Jaw and right under the jaw in the neck and tongue. It makes everything lock up and gives me very bad pain, when it stops I am not able to talk for a while. Hurts like hell and not able to find any doctor or ENT that can help or do anything about it.

     

    Hondo   

    Hondo...I have suggestions

    Hondo...I have suggestions that might help you as I have the same symptomology.  First, I have many, too many adverse reactions to medications.  Lyrica I cannot take, nor other meds they tried.  Some snowed me.  I am and have been taking Baclofen 10 mg a day for the trigeminal pain, and spasms/lockjaw sensation and cramping that threw me to my knees under my jaw.  I have been informed this is actually the floor of my mouth.  I also take 1 mg of Clonazepam at bedtime.  It helps so much.  I was told initially to massage my neck, throat and shoulders  Frequently.  I will feel tight in this area and I put coconut oil all over and massage it in.  It makes such a difference to the pliability of my skin and movement.  Or find a moisturizing creme that works for you.  I do this twice a day.

     

    An oldtimer who can barely open her mouth after 30 years tells me to open my mouth as far as I can daily.  Take a tongue blade and turn it in circles to keep the tissues moving.  Taking this to heart.  The Vit D is also crucial.  God Speed.

  • laurabeau
    laurabeau Member Posts: 40
    #10
    debbiejeanne said:

    lauren, no, but i'm so sorry

    lauren, no, but i'm so sorry your hubby is facing this.  how awful.  I am certainly praying it doesn't happen any more and that the jaw lock-ups stop as well.  did you ask his doc about this?  did he know if this has happened in other patients?  do he have any idea why this happened?  I sure hope you get some answers.

    God bless you both,

    dj

    Seizure med

    We do not know why my husband has seizure but with all head and neck radiation/chemo he was cleared from Cancer but the ct flipped into the lung and showed lung cancer. They say between chemo for it and the Cancer itself , it creates an imbalance in harmone level thus driving sodium levell down. He is on a drug that is used for bacterial infections as well as SIAD (sodium deficiency ) and it is working. 

    Laurabeau

  • laurabeau
    laurabeau Member Posts: 40
    #11
    IAmStrong said:

    Hondo...I have suggestions

    Hondo...I have suggestions that might help you as I have the same symptomology.  First, I have many, too many adverse reactions to medications.  Lyrica I cannot take, nor other meds they tried.  Some snowed me.  I am and have been taking Baclofen 10 mg a day for the trigeminal pain, and spasms/lockjaw sensation and cramping that threw me to my knees under my jaw.  I have been informed this is actually the floor of my mouth.  I also take 1 mg of Clonazepam at bedtime.  It helps so much.  I was told initially to massage my neck, throat and shoulders  Frequently.  I will feel tight in this area and I put coconut oil all over and massage it in.  It makes such a difference to the pliability of my skin and movement.  Or find a moisturizing creme that works for you.  I do this twice a day.

     

    An oldtimer who can barely open her mouth after 30 years tells me to open my mouth as far as I can daily.  Take a tongue blade and turn it in circles to keep the tissues moving.  Taking this to heart.  The Vit D is also crucial.  God Speed.

    Jaw issues

    we are going back for yet another check to MDA. We went January 20th and all cts were clean. my husband has had tremendous pain, swelling and just general weakness since the jaw issue 3 months ago. He hasn't faired well with the narco they have prescribed. Fentanyl  patch (25 mg) worked for a while but then wasn't strong enough so we switched to 50 mg. He dud well first day but drugged and faint feeling the next day so ge had me remove it. So he is back to plain ibupropen and just can't shake weakness. This is maddening. I wrote down the meds you are on to mention them to Head of Head and neck at MDA. There gas to be some answers to this.

    Laurabeau

  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    IAmStrong said:

    Hondo...I have suggestions

    Hondo...I have suggestions that might help you as I have the same symptomology.  First, I have many, too many adverse reactions to medications.  Lyrica I cannot take, nor other meds they tried.  Some snowed me.  I am and have been taking Baclofen 10 mg a day for the trigeminal pain, and spasms/lockjaw sensation and cramping that threw me to my knees under my jaw.  I have been informed this is actually the floor of my mouth.  I also take 1 mg of Clonazepam at bedtime.  It helps so much.  I was told initially to massage my neck, throat and shoulders  Frequently.  I will feel tight in this area and I put coconut oil all over and massage it in.  It makes such a difference to the pliability of my skin and movement.  Or find a moisturizing creme that works for you.  I do this twice a day.

     

    An oldtimer who can barely open her mouth after 30 years tells me to open my mouth as far as I can daily.  Take a tongue blade and turn it in circles to keep the tissues moving.  Taking this to heart.  The Vit D is also crucial.  God Speed.

    Baclofen

    I am still taking Lyrica but not as much as before because of the side effects it gave me with the muscles in my legs. I never heard of Baclofen but will ask my ENT next time I see her

     

    Tim Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    laurabeau said:

    Seizure med

    We do not know why my husband has seizure but with all head and neck radiation/chemo he was cleared from Cancer but the ct flipped into the lung and showed lung cancer. They say between chemo for it and the Cancer itself , it creates an imbalance in harmone level thus driving sodium levell down. He is on a drug that is used for bacterial infections as well as SIAD (sodium deficiency ) and it is working. 

    Laurabeau

    Seizure

    I was talking to my ENT last week and she told me that my problems are with Nerve 5 the Trigeminal Nerve and 7 the Cranial Nerve. She also explained why I am having spasms in the neck under the jaw but it was way over my head and I can remember what all she told me now.  But like to said sometimes it hurts so bad it will drop me to the floor for almost 5 minuets, I guess it is like having a baby in the mouth.

     

    Tim

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