I have never been examined for Trigeminal Neuralgia. From what I have read about it I don't seem to have the symptoms. My face feels as if it's burning like as if I had my face close to a hot fire. I do not have a temperature and my face is quite cool to touch. I don't have sharp searing pain. My face feels burning all day long no let up. Thank you for your interest.
Hi @mattey741
When I was first diagnosed with Trigeminal Neuralgia, I was given Trileptal, it worked, however; the ensuing brain fog was debilitating for me. So, I stopped and searched for alternative ways to reduce the effect of the outside world increasing my pain. My TGN started at the dentist, which mamy neurologists will argue is not possible, but I walked in the door and could barely crawl out the same door an hour later with my new crown. (With TGN the first problem is the diagnosis, the second is doctors believing the cause, and the third is living with the devastating pain, I now have neuropathy, so I have pins and needles head to toe.)
Hi @mattey741
When I was first diagnosed with Trigeminal Neuralgia, I was given Trileptal, it worked, however; the ensuing brain fog was debilitating for me. So, I stopped and searched for alternative ways to reduce the effect of the outside world increasing my pain. My TGN started at the dentist, which mamy neurologists will argue is not possible, but I walked in the door and could barely crawl out the same door an hour later with my new crown. (With TGN the first problem is the diagnosis, the second is doctors believing the cause, and the third is living with the devastating pain, I now have neuropathy, so I have pins and needles head to toe.)
My mouth pain started after I used one of those little brushes for cleaning between the teeth. My teeth will trigger the Neuralgia as soon as I brush. Very hard to keep teeth clean.
Gina5009
Strong electric surges throughout body when totally relaxed yet alert
You know those jumps when you’re falling asleep? Feels like you’re falling off a cliff? Imagine that but with intense electricity….. Not as bad as a taser (I know what that’s like, I have Trigeminal Neuralgia) but so intense it invokes an uncontrollable sense of fear/panic. It usually runs right up my spine. It occurs when I’m completely alert. If I’m in bed, laying on my left side, my right arm will fling itself away from my body (and vice versa on my right side). It gets so severe, I usually tuck my hands between my knees (but it can be so forceful sometimes that even this isn’t foolproof!).
For my personal health background and that of my family’s (that might be of any relevance), I have a sister with MS but my symptoms are different than what she’s experiencing. I have Trigeminal Neuralgia but it’s a rare form due to its severity. I even have simulated electrical pain in my head (w/o diagnosis) in addition to the TN. I’ve had more than 10 concussions and I had tbi as well (and possible “Boxer’s Brain”).
I know I’m a mess and it might just be nerve damage like the TN but I’d reeeeeally like to get someone’s input on this bc it’s driving me crazy. It’s affecting my sleep too!
Thanxx so much for taking the time to read this and respond, if you choose to do so. I appreciate it so much!
Strong electric surges throughout body when totally relaxed yet alert
You know those jumps when you’re falling asleep? Feels like you’re falling off a cliff? Imagine that but with intense electricity….. Not as bad as a taser (I know what that’s like, I have Trigeminal Neuralgia) but so intense it invokes an uncontrollable sense of fear/panic. It usually runs right up my spine. It occurs when I’m completely alert. If I’m in bed, laying on my left side, my right arm will fling itself away from my body (and vice versa on my right side). It gets so severe, I usually tuck my hands between my knees (but it can be so forceful sometimes that even this isn’t foolproof!).
For my personal health background and that of my family’s (that might be of any relevance), I have a sister with MS but my symptoms are different than what she’s experiencing. I have Trigeminal Neuralgia but it’s a rare form due to its severity. I even have simulated electrical pain in my head (w/o diagnosis) in addition to the TN. I’ve had more than 10 concussions and I had tbi as well (and possible “Boxer’s Brain”).
I know I’m a mess and it might just be nerve damage like the TN but I’d reeeeeally like to get someone’s input on this bc it’s driving me crazy. It’s affecting my sleep too!
Thanxx so much for taking the time to read this and respond, if you choose to do so. I appreciate it so much!
Have you tried tizanidine to calm the twitching? It has really worked for me! I take 2 mg in the morning and 2 mg at night. I feel so much calmer and the electrical jolts are gone. Best wishes! I hope this works for you too!
Strong electric surges throughout body when totally relaxed yet alert
You know those jumps when you’re falling asleep? Feels like you’re falling off a cliff? Imagine that but with intense electricity….. Not as bad as a taser (I know what that’s like, I have Trigeminal Neuralgia) but so intense it invokes an uncontrollable sense of fear/panic. It usually runs right up my spine. It occurs when I’m completely alert. If I’m in bed, laying on my left side, my right arm will fling itself away from my body (and vice versa on my right side). It gets so severe, I usually tuck my hands between my knees (but it can be so forceful sometimes that even this isn’t foolproof!).
For my personal health background and that of my family’s (that might be of any relevance), I have a sister with MS but my symptoms are different than what she’s experiencing. I have Trigeminal Neuralgia but it’s a rare form due to its severity. I even have simulated electrical pain in my head (w/o diagnosis) in addition to the TN. I’ve had more than 10 concussions and I had tbi as well (and possible “Boxer’s Brain”).
I know I’m a mess and it might just be nerve damage like the TN but I’d reeeeeally like to get someone’s input on this bc it’s driving me crazy. It’s affecting my sleep too!
Thanxx so much for taking the time to read this and respond, if you choose to do so. I appreciate it so much!
Hello @yayakiss and welcome to Mayo Clinic Connect. You are not alone, which is why you will notice I have moved your post into an existing discussion which you can now find here:
- Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
I did this to help connect you with other members, like @vickiekay, who has already joined you to share something she is doing and feels is working for her symptoms. Other members, such as @aderaw97@jfn and @mattey741 have all recently shared in this discussion.
Hi @mattey741
When I was first diagnosed with Trigeminal Neuralgia, I was given Trileptal, it worked, however; the ensuing brain fog was debilitating for me. So, I stopped and searched for alternative ways to reduce the effect of the outside world increasing my pain. My TGN started at the dentist, which mamy neurologists will argue is not possible, but I walked in the door and could barely crawl out the same door an hour later with my new crown. (With TGN the first problem is the diagnosis, the second is doctors believing the cause, and the third is living with the devastating pain, I now have neuropathy, so I have pins and needles head to toe.)
Pretty sure this is a dumb question, but did you try having that crown replaced? I had years of occipital neuralgia, and the only thing that helped the pain was ice, until I was given Depo Medrol injections, which cured it.
Pretty sure this is a dumb question, but did you try having that crown replaced? I had years of occipital neuralgia, and the only thing that helped the pain was ice, until I was given Depo Medrol injections, which cured it.
It was a new crown that was toooooooooooo big! Dentists etc... would not
remove it, even though you could see my teeth moved as a result. It took 4
years to find a dentist to work with me, it turned out to be a very
expensive nightmare, (I can explain later if you wish, teeth related to
tgn) that just did not go away. My Trigeminal Neuralgia decreased about 95%
after seeing the cranial sacral therapist. What a difference in my life. I
am still not fond of bright flashing lights, music with a heavy base,
cleaning detergent smells, and cheap perfume. I know it will not take me 3
agonizing weeks to recover from my TGN being triggered, and that alone is
priceless.
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I have never been examined for Trigeminal Neuralgia. From what I have read about it I don't seem to have the symptoms. My face feels as if it's burning like as if I had my face close to a hot fire. I do not have a temperature and my face is quite cool to touch. I don't have sharp searing pain. My face feels burning all day long no let up. Thank you for your interest.
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Like -
Helpful -
Hug
1 ReactionHi @mattey741
When I was first diagnosed with Trigeminal Neuralgia, I was given Trileptal, it worked, however; the ensuing brain fog was debilitating for me. So, I stopped and searched for alternative ways to reduce the effect of the outside world increasing my pain. My TGN started at the dentist, which mamy neurologists will argue is not possible, but I walked in the door and could barely crawl out the same door an hour later with my new crown. (With TGN the first problem is the diagnosis, the second is doctors believing the cause, and the third is living with the devastating pain, I now have neuropathy, so I have pins and needles head to toe.)
Pups need out, I will be back.
It's been 4+ yrs with TN, now Taking Tegretol with Lyrica help greatly. 1200 & 450 mg respectively.
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4 ReactionsFor some reason I never thought of the dentist. Maybe something triggered it there. You just never know!
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2 ReactionsMy mouth pain started after I used one of those little brushes for cleaning between the teeth. My teeth will trigger the Neuralgia as soon as I brush. Very hard to keep teeth clean.
Gina5009
-
Like -
Helpful -
Hug
2 ReactionsStrong electric surges throughout body when totally relaxed yet alert
You know those jumps when you’re falling asleep? Feels like you’re falling off a cliff? Imagine that but with intense electricity….. Not as bad as a taser (I know what that’s like, I have Trigeminal Neuralgia) but so intense it invokes an uncontrollable sense of fear/panic. It usually runs right up my spine. It occurs when I’m completely alert. If I’m in bed, laying on my left side, my right arm will fling itself away from my body (and vice versa on my right side). It gets so severe, I usually tuck my hands between my knees (but it can be so forceful sometimes that even this isn’t foolproof!).
For my personal health background and that of my family’s (that might be of any relevance), I have a sister with MS but my symptoms are different than what she’s experiencing. I have Trigeminal Neuralgia but it’s a rare form due to its severity. I even have simulated electrical pain in my head (w/o diagnosis) in addition to the TN. I’ve had more than 10 concussions and I had tbi as well (and possible “Boxer’s Brain”).
I know I’m a mess and it might just be nerve damage like the TN but I’d reeeeeally like to get someone’s input on this bc it’s driving me crazy. It’s affecting my sleep too!
Thanxx so much for taking the time to read this and respond, if you choose to do so. I appreciate it so much!
Have you tried tizanidine to calm the twitching? It has really worked for me! I take 2 mg in the morning and 2 mg at night. I feel so much calmer and the electrical jolts are gone. Best wishes! I hope this works for you too!
-
Like -
Helpful -
Hug
1 ReactionHello @yayakiss and welcome to Mayo Clinic Connect. You are not alone, which is why you will notice I have moved your post into an existing discussion which you can now find here:
- Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
I did this to help connect you with other members, like @vickiekay, who has already joined you to share something she is doing and feels is working for her symptoms. Other members, such as @aderaw97 @jfn and @mattey741 have all recently shared in this discussion.
What, if anything, have you already tried?
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Hug
2 ReactionsPretty sure this is a dumb question, but did you try having that crown replaced? I had years of occipital neuralgia, and the only thing that helped the pain was ice, until I was given Depo Medrol injections, which cured it.
-
Like -
Helpful -
Hug
1 ReactionHi @misu,
It was a new crown that was toooooooooooo big! Dentists etc... would not
remove it, even though you could see my teeth moved as a result. It took 4
years to find a dentist to work with me, it turned out to be a very
expensive nightmare, (I can explain later if you wish, teeth related to
tgn) that just did not go away. My Trigeminal Neuralgia decreased about 95%
after seeing the cranial sacral therapist. What a difference in my life. I
am still not fond of bright flashing lights, music with a heavy base,
cleaning detergent smells, and cheap perfume. I know it will not take me 3
agonizing weeks to recover from my TGN being triggered, and that alone is
priceless.
Jill