I have had Trigeminal-Neuralgia since 2005. It started small. Which it came on short shocks. Then it increased in my face longer and longer. My 1st neuro DX me in July 2006 MS and TN. I thought I went in denial and in 2008 I had a facial shock over an half hour. My face was like the art the scream. Luckily my neuro put me on carbamazepine which took a half hour to work . My shocks started on The right side of my face. Which over time it went to my left side. Now it's on both sides . And of course my carbamazepine stopped working in 2022 at 1200mg. Spent 3 months not eating or drinking or talking. And then a hospital visit for fluids and second neuro tried oxcarbazepine. Which I am on 1200mg. Neuro said I will have to Try procedures next. I saw a neurosurgeon and he said it will come back. I hope this medication works
For a long time.
I wish I had a answer. I know over time I see medications and procedures work differently on people . I don't even have a answer for myself.
I have had Trigeminal-Neuralgia since 2005. It started small. Which it came on short shocks. Then it increased in my face longer and longer. My 1st neuro DX me in July 2006 MS and TN. I thought I went in denial and in 2008 I had a facial shock over an half hour. My face was like the art the scream. Luckily my neuro put me on carbamazepine which took a half hour to work . My shocks started on The right side of my face. Which over time it went to my left side. Now it's on both sides . And of course my carbamazepine stopped working in 2022 at 1200mg. Spent 3 months not eating or drinking or talking. And then a hospital visit for fluids and second neuro tried oxcarbazepine. Which I am on 1200mg. Neuro said I will have to Try procedures next. I saw a neurosurgeon and he said it will come back. I hope this medication works
For a long time.
I wish I had a answer. I know over time I see medications and procedures work differently on people . I don't even have a answer for myself.
I am so sorry for all the pain you are suffering. I am new to this subject, but I started out with a bang. Like you I suddenly had this terrible pain in my left jaw. I could not open my mouth, or eat. If my cheek touched my jaw, there was immediate pain, so could not talk. Worst of all I could not get a Doctor Appointment for one month. My G.P. tried a number of medications, but for one reason or another I could not take them. I was on Codene and Tylenol. Very little help. Finally saw a Neurologist, and he started me on Pregabalin 75 mg, three times a day. Miracle, of miracles it worked. We have had to try and reduce the amount, because I gained 10 lbs. the first month. I am now on 50 mg twice a day. Works well, but I still have minor problems when it is time to eat. I paint the gum area with Ambe sol (baby teething medication) and this temporarily solves the problem . I don't know if any of this is a help to you, but I will pray that it might.
Gina5009
I have Multiple Sclerosis, don't know why peope with MS are prone to that, no myelin protecting the facial nerve, I guess. I was given carbamezine (sp?) in the ER and oral prednisone for some reason, I threw up about an hour later, threw up nothing bc hadn't eaten...
Awful pain yes. My neurologist back then prescribed Gabapentin (Neurontin). The dosages recommended are never high enough. The older I get the the longer the episodes seem to last. I pretty much triple the dosage to stop the pain.
I eat baby food and soup and frozen banana that's got peanuts in it, nothing crunch little cups, like ice cream, without cream, ices. made of bananas, with peanut. ()And though it sounds awful, cottage cheese, sardines and or V-7, for vitamins. Blend it, its actually pretty good.)
The gabapentin makes my already poor balance even worse, its worst side effect, so I csn't shower, am awaiting shower chair, but think I am going to ask my aide to help me get in snd out of a bath today. It's been 18 days now, longest ever. Wet wipes and dry shampoo are not the same. Hate asking for help but that's what she's here for, I guess.
Anyway, try gabapentin. It worked for me before just after a few days. Best of luck to you.
I have Multiple Sclerosis, don't know why peope with MS are prone to that, no myelin protecting the facial nerve, I guess. I was given carbamezine (sp?) in the ER and oral prednisone for some reason, I threw up about an hour later, threw up nothing bc hadn't eaten...
Awful pain yes. My neurologist back then prescribed Gabapentin (Neurontin). The dosages recommended are never high enough. The older I get the the longer the episodes seem to last. I pretty much triple the dosage to stop the pain.
I eat baby food and soup and frozen banana that's got peanuts in it, nothing crunch little cups, like ice cream, without cream, ices. made of bananas, with peanut. ()And though it sounds awful, cottage cheese, sardines and or V-7, for vitamins. Blend it, its actually pretty good.)
The gabapentin makes my already poor balance even worse, its worst side effect, so I csn't shower, am awaiting shower chair, but think I am going to ask my aide to help me get in snd out of a bath today. It's been 18 days now, longest ever. Wet wipes and dry shampoo are not the same. Hate asking for help but that's what she's here for, I guess.
Anyway, try gabapentin. It worked for me before just after a few days. Best of luck to you.
Thank you for your suggestion, but unfortunately gabapentin was the first drug I tried and it did absolutely nothing for me except to make me very tired. Gabapentin has been the miracle drug so far. Pain was gone almost completely with this drug. It is strange how each of us seems to be so different with regard to this illness.
Gina 5009
everyone has a different set of symptoms with ms and a different reaction to drugs. right now i don't think the gabapentin is working, it's been 3 weeks already. otoh, it hasn't spread all the way up the left side of my face, it's stayed in my mouth, left top where it's always started, very weird, but maybe that means it is working, keeping it from spreading. I'm going to ask my neurologist about Pregablin when in her in April.
Thank you for your suggestion, but unfortunately gabapentin was the first drug I tried and it did absolutely nothing for me except to make me very tired. Gabapentin has been the miracle drug so far. Pain was gone almost completely with this drug. It is strange how each of us seems to be so different with regard to this illness.
Gina 5009
i have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
I have tried almost everything for head pain stem cell therapy is expensive and their is no real studies about neuropathy and it’s effect. But look into everything , go see another neurologist get a new prospective.
All across my face and forehead has a continuous burning sensation. Also dull pain at back of nose. I have had all sinus tests done and they all have been clear. Does anyone else have this problem and any treatment solutions would be most welcome. It rules my life. Thank you.
All across my face and forehead has a continuous burning sensation. Also dull pain at back of nose. I have had all sinus tests done and they all have been clear. Does anyone else have this problem and any treatment solutions would be most welcome. It rules my life. Thank you.
Have you ever been examined for Trigeminal Neuralgia? Members such as @rozmuhr@gina5009@ekelks and @hanna4 may be able to come in and share their experiences with you to see if this aligns with your experience.
Thank you for your concern. I have been experiencing the pain for about a year. My physcian knew immediately what my problem was as soon as I described the type of pain I was having, and my dentist agreed with this diagnosis. I have been seeing a neurologist since then, and it has been found that I apparently have the "M" factor which can be a factor for MCUS or maybe nothing. Just another "Wait and See" . They have me seeing a Hematologist 4 times a year for this. My pain is in my lower left jaw directly under my teeth into the jaw joint. It was so severe I could not open my mouth, talk, or eat. Gabapentin was no help, but thank God after going through at least 3 other drugs, Pregabolin was like a Miracle. It relieives most of the pain, and then I paint my jaw with Ambesol (baby teething medication) and that solves the problem. I am 92 so this maybe the problem. I am told our nerves are coated and as we get older this coating wears out and if the nerve is near a blood vessel it rubs against this vessel, and thus we feel the pain.
Hope tis information maybe of some help to you.
Gina5009
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I have had Trigeminal-Neuralgia since 2005. It started small. Which it came on short shocks. Then it increased in my face longer and longer. My 1st neuro DX me in July 2006 MS and TN. I thought I went in denial and in 2008 I had a facial shock over an half hour. My face was like the art the scream. Luckily my neuro put me on carbamazepine which took a half hour to work . My shocks started on The right side of my face. Which over time it went to my left side. Now it's on both sides . And of course my carbamazepine stopped working in 2022 at 1200mg. Spent 3 months not eating or drinking or talking. And then a hospital visit for fluids and second neuro tried oxcarbazepine. Which I am on 1200mg. Neuro said I will have to Try procedures next. I saw a neurosurgeon and he said it will come back. I hope this medication works
For a long time.
I wish I had a answer. I know over time I see medications and procedures work differently on people . I don't even have a answer for myself.
-
Like -
Helpful -
Hug
2 ReactionsI am so sorry for all the pain you are suffering. I am new to this subject, but I started out with a bang. Like you I suddenly had this terrible pain in my left jaw. I could not open my mouth, or eat. If my cheek touched my jaw, there was immediate pain, so could not talk. Worst of all I could not get a Doctor Appointment for one month. My G.P. tried a number of medications, but for one reason or another I could not take them. I was on Codene and Tylenol. Very little help. Finally saw a Neurologist, and he started me on Pregabalin 75 mg, three times a day. Miracle, of miracles it worked. We have had to try and reduce the amount, because I gained 10 lbs. the first month. I am now on 50 mg twice a day. Works well, but I still have minor problems when it is time to eat. I paint the gum area with Ambe sol (baby teething medication) and this temporarily solves the problem . I don't know if any of this is a help to you, but I will pray that it might.
Gina5009
-
Like -
Helpful -
Hug
2 ReactionsI have Multiple Sclerosis, don't know why peope with MS are prone to that, no myelin protecting the facial nerve, I guess. I was given carbamezine (sp?) in the ER and oral prednisone for some reason, I threw up about an hour later, threw up nothing bc hadn't eaten...
Awful pain yes. My neurologist back then prescribed Gabapentin (Neurontin). The dosages recommended are never high enough. The older I get the the longer the episodes seem to last. I pretty much triple the dosage to stop the pain.
I eat baby food and soup and frozen banana that's got peanuts in it, nothing crunch little cups, like ice cream, without cream, ices. made of bananas, with peanut. ()And though it sounds awful, cottage cheese, sardines and or V-7, for vitamins. Blend it, its actually pretty good.)
The gabapentin makes my already poor balance even worse, its worst side effect, so I csn't shower, am awaiting shower chair, but think I am going to ask my aide to help me get in snd out of a bath today. It's been 18 days now, longest ever. Wet wipes and dry shampoo are not the same. Hate asking for help but that's what she's here for, I guess.
Anyway, try gabapentin. It worked for me before just after a few days. Best of luck to you.
-
Like -
Helpful -
Hug
1 ReactionThank you for your suggestion, but unfortunately gabapentin was the first drug I tried and it did absolutely nothing for me except to make me very tired. Gabapentin has been the miracle drug so far. Pain was gone almost completely with this drug. It is strange how each of us seems to be so different with regard to this illness.
Gina 5009
-
Like -
Helpful -
Hug
2 Reactionseveryone has a different set of symptoms with ms and a different reaction to drugs. right now i don't think the gabapentin is working, it's been 3 weeks already. otoh, it hasn't spread all the way up the left side of my face, it's stayed in my mouth, left top where it's always started, very weird, but maybe that means it is working, keeping it from spreading. I'm going to ask my neurologist about Pregablin when in her in April.
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Like -
Helpful -
Hug
1 ReactionSorry, wrong medication listed, I take Pregabalin not Gabapentin.
Gina5009
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2 ReactionsI have tried almost everything for head pain stem cell therapy is expensive and their is no real studies about neuropathy and it’s effect. But look into everything , go see another neurologist get a new prospective.
-
Like -
Helpful -
Hug
1 ReactionAll across my face and forehead has a continuous burning sensation. Also dull pain at back of nose. I have had all sinus tests done and they all have been clear. Does anyone else have this problem and any treatment solutions would be most welcome. It rules my life. Thank you.
Hello @mattey741. You will notice I have moved your post into this discussion:
- Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
Have you ever been examined for Trigeminal Neuralgia? Members such as @rozmuhr @gina5009 @ekelks and @hanna4 may be able to come in and share their experiences with you to see if this aligns with your experience.
How long have you been experiencing this?
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Helpful -
Hug
1 ReactionThank you for your concern. I have been experiencing the pain for about a year. My physcian knew immediately what my problem was as soon as I described the type of pain I was having, and my dentist agreed with this diagnosis. I have been seeing a neurologist since then, and it has been found that I apparently have the "M" factor which can be a factor for MCUS or maybe nothing. Just another "Wait and See" . They have me seeing a Hematologist 4 times a year for this. My pain is in my lower left jaw directly under my teeth into the jaw joint. It was so severe I could not open my mouth, talk, or eat. Gabapentin was no help, but thank God after going through at least 3 other drugs, Pregabolin was like a Miracle. It relieives most of the pain, and then I paint my jaw with Ambesol (baby teething medication) and that solves the problem. I am 92 so this maybe the problem. I am told our nerves are coated and as we get older this coating wears out and if the nerve is near a blood vessel it rubs against this vessel, and thus we feel the pain.
Hope tis information maybe of some help to you.
Gina5009