I went to see a third doctor (neurologist) today and I was informed that I might not have TN. The last two doctors I saw (GP and neurologist) told me I did in fact have TN. I am seeing different doctors just to make sure I am diagnosed correctly. I am relatively new to this facial pain, maybe about 1 year. I have right sided facial pain. I have gotten pain attacks from eating, talking, brushing my teeth, and from cold wind hitting my face. Apparently today’s doctor didn’t feel that was enough. He says I’m too young, I’m 33. He said those attacks just happened once and that’s not enough to call it TN. He also said I don’t have a “trigger point” to set off my attacks. So he ordered more MRIs and an MRA. He said it was fine to continue with the Gabapentin for now.
Has this ever happened to anyone? I would appreciate any comments, advice, input.
Hi. Sounds like we’re in the same boat. I’ve been to see my dentist who thought it could be TN and then my GP who also agreed. I was then sent to a jaw specialist who told me as I was only 38 and the pain didn’t last for several minutes that I didn’t have TN and that it was due to me grinding my teeth. I have read so much literature on TN and find it difficult to believe that I don’t have it. Don’t get me wrong, I don’t want to have it but I want to be diagnosed correctly and early so I can be treated appropriately. I’m now having attacks every day and between 5 and 25 attacks.
I have the same triggers as you do, brushing my teetch, eating, talking, licking my lips and today it’s so bad that I can’t speak to my kids and have ended up in tears from the pain.
I’m going to try acupuncture this afternoon. I haven’t been prescribed any medication and I’d like to see if I can achieve pain management through natural therapy (even though I’m terrified of acupuncture!). Also, going to try a natural myelin sheath repair herb. I’ll let you know if I have any success. Keep well.
Hi Karina, Thank you for your reply. Sorry to hear you are having such a hard time with this. It’s even more difficult when you have children. I have a 3 year old so I know how you feel. I was also disappointed when I was told I did not have TN recently, because like you, I also want to be diagnosed so I can be treated. Yes, I know how you feel about doing all the research and hearing you don’t have TN. Someone also recommended acupuncture, but I am scared to try it. Let me know how it goes for you. I am getting more tests done to find out what the real problem is. The first and only MRI I had done did not focus on the trigeminal nerve, so I’m hoping this next one is more specific so I can find out if there is something pressuring the nerve. Good luck to you and hope you have a pain free day. Let me know how the acupuncture and myelin sheath repair herb goes.
If your doctor told you that 33 is too young to have TN, I don’t think he knows enough about this disease. It is most common in people over the age of 65, but even children can get it. I have been through two neurologists so far, neither were very helpful. They seem to have the attitude that I was just a complainer and I should be glad they ruled out any “real” problem and I should learn to live with it. Yes, I am very grateful that I don’t have a brain tumor or MS, but daily excruciating head pain is not something I should have to just live with. I am 48, and have had this since I was 42… I don’t want to spend the rest of my life like this! I didn’t have a “trigger point” at first, but after a few years it developed. If I try to wear sunglasses or apply makeup under my right eye or right side of my nose… OWWW! I’m glad they are doing an MRA. I haven’t had that test yet, but that might be able to show a blood vessel loop irritating the Trigeminal nerve which would confirm your diagnosis of TN. I have had 2 MRIs, but they didn’t show anything. I think the radiologist was only looking for tumors or lesions, not blood vessels gone wild (ha). Good Luck! (and your baby is adorable, by the way!)
Hi Suzanne, thank you for your reply. Sorry to hear you have been struggling with TN for 6 years. The “trigger point” sounds very painful. It can be frustrating when doctors don’t understand what we are feeling. I have heard that TN is progressive, I was diagnosed just recently and I am afraid of what the future might hold. I had never heard of an MRA, but I am glad I am getting it done. If you’ve had pain for so long, wouldn’t the doctors order an MRA for you to find something? I hope you are able to rest from your pain soon. Hope tomorrow is a better day for you.
Hi Enriqueta,
I hope you are doing better. Those same activities triggered my pain. Keep us posted on the results of your MRIs and how you are feeling.
Liz K.
Hi Liz, I appreciate your response. Thank you for your good wishes. I will let you know, I have the exams next week.
Oh Enriqueta, this must be so frustrating for you. I pray you get a doctor willing to diagnose your symptoms. Little story… I have had MS for 20 years. I was diagnosed by Cleveland Clinic before MRI’s were the diagnosis darlings they are now. When I had my first MRI in 1998 or so, they said, according to the MRI, I did not have MS. Fortunately, my neurologist was comfortable with the diagnosis. Every subsequent MRI report states that “patient does not show signs of MS.” Guess what? When Dr. Bowles was in my brain, looking at my trigeminal nerve, he found tons and tons of MS plaque (MS scarring). He saw it with his naked eye. All that to say, your symptoms are very much like TN. Keep being persistant, even though I know it is exhausting until you get the help you need.
My TN didn’t always feel as if it had a trigger either! I think sometimes it is triggered without us really knowing why.
Hang in there, honey!!
Thank you, Melodye! I am hoping on this next MRI and MRA (getting it done on Tuesday), they are able to see something. I know I am not making up anything, the pain is very real! Hope you are feeling much better! I do wish you have a wonderful day!
UMMMM have the MRIs and stuff but sounds like TN to me! It took me seeing many different doctors to finally get diagnosed correctly! The dentist and eye doctor were first b/c of the location of my pain. They found nothing. Pain subsided for a while so I mentioned it to GP. He thought maybe I had a bad sinus/ear infection. Pain returned and a min clinic doctor said I was having a TN attack and to go straight to an urgent care facility to get a steroid shot and pain meds asap. Keep in mind I had never heard of TN before this. When I got there the doctor said there was NO way I had TN. That if I did I would have SHINGLES or MS. She also said that only old women get TN not young women etc etc. She was basically laughing at me b/c I thought this what I had. She refused to give me a pain killer so she gave me an anti-inflammatory saying I could have slept on my face wrong!!! I was in so much pain I felt like kicking her. After 24 hours of pain I went to a different urgent care facility and the doctor there was 100% convinced I had TN and ordered an MRI. I took the results to a neuro that had dealt with TN before and they confirmed I had TN. Like you I have it only on my right side. I have been told that most doctors will NEVER see a case of this disorder in their lives therefore it goes mis diagnosed all the time. I suggest asking any doctor’s office you make an appt with if they have treated TN before. If not find a new one. My TN pain isn’t text book. I do get the zaps and zings from time to time but mostly I have hours of throbbing stabbing constant pain that starts in my teeth and settles in my temple eye area. The worst attack I had the entire right side of my face felt like it was on fire. I live in fear of that happening again. Wind, brushing hair or teeth, cold and kissing has triggered my attacks in the past. I’m no doctor but it sounds like you may have TN. Have you had your sinuses x-rayed? I’ve heard of people with extreme sinus pressure/infection have a similar pain to TN. Is the medicine you’re on working?
I am going to Cleveland Clinic in FL for my test!
Melodye Olsavsky said:
Oh Enriqueta, this must be so frustrating for you. I pray you get a doctor willing to diagnose your symptoms. Little story… I have had MS for 20 years. I was diagnosed by Cleveland Clinic before MRI’s were the diagnosis darlings they are now. When I had my first MRI in 1998 or so, they said, according to the MRI, I did not have MS. Fortunately, my neurologist was comfortable with the diagnosis. Every subsequent MRI report states that “patient does not show signs of MS.” Guess what? When Dr. Bowles was in my brain, looking at my trigeminal nerve, he found tons and tons of MS plaque (MS scarring). He saw it with his naked eye. All that to say, your symptoms are very much like TN. Keep being persistant, even though I know it is exhausting until you get the help you need.
My TN didn’t always feel as if it had a trigger either! I think sometimes it is triggered without us really knowing why.
Hang in there, honey!!
I hope all goes well with this doctor you have. I am sooo sick of doctors and explaining thing to them. When I first got the TN it would come and go by itself, years later I notice trigger points. I think mine changes as time goes by. On this site we are so much the same but very different at the same time.
Lindsey, your reply sounded so so familiar to me, the suggestion of sinus and then shingles for instance, being given anti-inflams, being told I was too young to have TN, And yes, re a lot of the doctors who have never seen a case of TN, well they just don’t seem to want to go there. So much money was wasted on me before my diagnosis. However the relief of a diagnosis, even tho its not exactly good news for you, at least you and your medics can jump onto it and help. Its the knowing.
Lyn
Lindsey said:
UMMMM have the MRIs and stuff but sounds like TN to me! It took me seeing many different doctors to finally get diagnosed correctly! The dentist and eye doctor were first b/c of the location of my pain. They found nothing. Pain subsided for a while so I mentioned it to GP. He thought maybe I had a bad sinus/ear infection. Pain returned and a min clinic doctor said I was having a TN attack and to go straight to an urgent care facility to get a steroid shot and pain meds asap. Keep in mind I had never heard of TN before this. When I got there the doctor said there was NO way I had TN. That if I did I would have SHINGLES or MS. She also said that only old women get TN not young women etc etc. She was basically laughing at me b/c I thought this what I had. She refused to give me a pain killer so she gave me an anti-inflammatory saying I could have slept on my face wrong!!! I was in so much pain I felt like kicking her. After 24 hours of pain I went to a different urgent care facility and the doctor there was 100% convinced I had TN and ordered an MRI. I took the results to a neuro that had dealt with TN before and they confirmed I had TN. Like you I have it only on my right side. I have been told that most doctors will NEVER see a case of this disorder in their lives therefore it goes mis diagnosed all the time. I suggest asking any doctor’s office you make an appt with if they have treated TN before. If not find a new one. My TN pain isn’t text book. I do get the zaps and zings from time to time but mostly I have hours of throbbing stabbing constant pain that starts in my teeth and settles in my temple eye area. The worst attack I had the entire right side of my face felt like it was on fire. I live in fear of that happening again. Wind, brushing hair or teeth, cold and kissing has triggered my attacks in the past. I’m no doctor but it sounds like you may have TN. Have you had your sinuses x-rayed? I’ve heard of people with extreme sinus pressure/infection have a similar pain to TN. Is the medicine you’re on working?
wow how young is to young im 24 and have tn on both sides,the nuro i am seeing thinks i have MS as i have nothing showing in MRIs. I was put in the stroke ward last year at my local hospital coz i couldnt walk my legs were weak.i had many tests and still nothing my doctor said there was nothing he could do maybe it was all in my head so that made me mad and very upset,so then when i was in pain i would sit and cry cause i had lost trust in my doctor and vowed never to go to a doctor again untill the pain was that bad i couldnt talk think and when i tryd to talk my words were all over the place they didnt evan fit to what i was trying to say like the wrong words would come out,lol so i went to the hospital and was told to stay on my tegratol and see my nuro again.Its so sad that when a doctor or nuro can not find anything its all in our head,so im trying hard to trust in doctors i feel let down alltho i have being told i def have tn its hard day to day as all we have to turn to is our doctors or nuros,lets hope that they learn to understand tn and not throw there hands in the air and let us down,i hope ur pain goes away and u find out a straight answer to what is going on with u xxx mina hehe sorry bout the spelling lol to many meds … =-S
Hi Linsey, thank you for your advice! It seems so frustrating that you had to go through different doctors as well to get diagnosed. I have also gotten the hours of pain. My last attack laster 22 hours! Very, very painful! Hope you are feeling better these days! take care.
Lindsey said:
UMMMM have the MRIs and stuff but sounds like TN to me! It took me seeing many different doctors to finally get diagnosed correctly! The dentist and eye doctor were first b/c of the location of my pain. They found nothing. Pain subsided for a while so I mentioned it to GP. He thought maybe I had a bad sinus/ear infection. Pain returned and a min clinic doctor said I was having a TN attack and to go straight to an urgent care facility to get a steroid shot and pain meds asap. Keep in mind I had never heard of TN before this. When I got there the doctor said there was NO way I had TN. That if I did I would have SHINGLES or MS. She also said that only old women get TN not young women etc etc. She was basically laughing at me b/c I thought this what I had. She refused to give me a pain killer so she gave me an anti-inflammatory saying I could have slept on my face wrong!!! I was in so much pain I felt like kicking her. After 24 hours of pain I went to a different urgent care facility and the doctor there was 100% convinced I had TN and ordered an MRI. I took the results to a neuro that had dealt with TN before and they confirmed I had TN. Like you I have it only on my right side. I have been told that most doctors will NEVER see a case of this disorder in their lives therefore it goes mis diagnosed all the time. I suggest asking any doctor’s office you make an appt with if they have treated TN before. If not find a new one. My TN pain isn’t text book. I do get the zaps and zings from time to time but mostly I have hours of throbbing stabbing constant pain that starts in my teeth and settles in my temple eye area. The worst attack I had the entire right side of my face felt like it was on fire. I live in fear of that happening again. Wind, brushing hair or teeth, cold and kissing has triggered my attacks in the past. I’m no doctor but it sounds like you may have TN. Have you had your sinuses x-rayed? I’ve heard of people with extreme sinus pressure/infection have a similar pain to TN. Is the medicine you’re on working?
Hi Diana, it can be frustrating. I hope you found a doctor who knows what TN is and can treat you correctly. It does seem that for some people, the trigger points come years later. I am new to TN and don’t have them, but they sound very painful! Good luck to you.
Diana Parker said:
I hope all goes well with this doctor you have. I am sooo sick of doctors and explaining thing to them. When I first got the TN it would come and go by itself, years later I notice trigger points. I think mine changes as time goes by. On this site we are so much the same but very different at the same time.
Hi Tamina, sorry to hear about your bad experience with doctors. At times they can be quite cold. I hope you are feeling better and hope you found a doctor you can trust to help you. 24 is a very young age to be experiencing something like TN. Hang in there and hope things are better for you.
tamina stewart said:
wow how young is to young im 24 and have tn on both sides,the nuro i am seeing thinks i have MS as i have nothing showing in MRIs. I was put in the stroke ward last year at my local hospital coz i couldnt walk my legs were weak.i had many tests and still nothing my doctor said there was nothing he could do maybe it was all in my head so that made me mad and very upset,so then when i was in pain i would sit and cry cause i had lost trust in my doctor and vowed never to go to a doctor again untill the pain was that bad i couldnt talk think and when i tryd to talk my words were all over the place they didnt evan fit to what i was trying to say like the wrong words would come out,lol so i went to the hospital and was told to stay on my tegratol and see my nuro again.Its so sad that when a doctor or nuro can not find anything its all in our head,so im trying hard to trust in doctors i feel let down alltho i have being told i def have tn its hard day to day as all we have to turn to is our doctors or nuros,lets hope that they learn to understand tn and not throw there hands in the air and let us down,i hope ur pain goes away and u find out a straight answer to what is going on with u xxx mina hehe sorry bout the spelling lol to many meds … =-S
Hi Enriqueta,
I hope you are doing better. And I hope you don’t have MS.
When will you return for the results of your tests? I think you said the MRI did not show anything. My MRI was negative but the neurosurgeon found a compression. And that is not uncommon. But if the doctor thinks you have MS, then maybe your treatment/meds will be different. And about the trigger points, mine came later. And at my worst, I couldn’t tell you all the trigger points because I hurt almost continuously. So it seemed like even breathing hurt. But after MVD and my pain decreased, then I could identify the triggers more easily.
Liz K
Enriqueta Trejo said:
Hi Tamina, sorry to hear about your bad experience with doctors. At times they can be quite cold. I hope you are feeling better and hope you found a doctor you can trust to help you. 24 is a very young age to be experiencing something like TN. Hang in there and hope things are better for you.
tamina stewart said:wow how young is to young im 24 and have tn on both sides,the nuro i am seeing thinks i have MS as i have nothing showing in MRIs. I was put in the stroke ward last year at my local hospital coz i couldnt walk my legs were weak.i had many tests and still nothing my doctor said there was nothing he could do maybe it was all in my head so that made me mad and very upset,so then when i was in pain i would sit and cry cause i had lost trust in my doctor and vowed never to go to a doctor again untill the pain was that bad i couldnt talk think and when i tryd to talk my words were all over the place they didnt evan fit to what i was trying to say like the wrong words would come out,lol so i went to the hospital and was told to stay on my tegratol and see my nuro again.Its so sad that when a doctor or nuro can not find anything its all in our head,so im trying hard to trust in doctors i feel let down alltho i have being told i def have tn its hard day to day as all we have to turn to is our doctors or nuros,lets hope that they learn to understand tn and not throw there hands in the air and let us down,i hope ur pain goes away and u find out a straight answer to what is going on with u xxx mina hehe sorry bout the spelling lol to many meds … =-S
Hi Liz, I think it was Tamina who said she might have MS. I had my MRI and MRA last Tuesday and I don’t see my doctor for another 2 weeks. I tried asking for a copy of the report but the imaging center does not release it and my doctor will not either until I see him first. Other people have also mentioned the trigger points coming later. Does everyone eventually get trigger points?
Liz K. said:
Hi Enriqueta,
I hope you are doing better. And I hope you don’t have MS.
When will you return for the results of your tests? I think you said the MRI did not show anything. My MRI was negative but the neurosurgeon found a compression. And that is not uncommon. But if the doctor thinks you have MS, then maybe your treatment/meds will be different. And about the trigger points, mine came later. And at my worst, I couldn’t tell you all the trigger points because I hurt almost continuously. So it seemed like even breathing hurt. But after MVD and my pain decreased, then I could identify the triggers more easily.
Liz K
Enriqueta Trejo said:Hi Tamina, sorry to hear about your bad experience with doctors. At times they can be quite cold. I hope you are feeling better and hope you found a doctor you can trust to help you. 24 is a very young age to be experiencing something like TN. Hang in there and hope things are better for you.
tamina stewart said:wow how young is to young im 24 and have tn on both sides,the nuro i am seeing thinks i have MS as i have nothing showing in MRIs. I was put in the stroke ward last year at my local hospital coz i couldnt walk my legs were weak.i had many tests and still nothing my doctor said there was nothing he could do maybe it was all in my head so that made me mad and very upset,so then when i was in pain i would sit and cry cause i had lost trust in my doctor and vowed never to go to a doctor again untill the pain was that bad i couldnt talk think and when i tryd to talk my words were all over the place they didnt evan fit to what i was trying to say like the wrong words would come out,lol so i went to the hospital and was told to stay on my tegratol and see my nuro again.Its so sad that when a doctor or nuro can not find anything its all in our head,so im trying hard to trust in doctors i feel let down alltho i have being told i def have tn its hard day to day as all we have to turn to is our doctors or nuros,lets hope that they learn to understand tn and not throw there hands in the air and let us down,i hope ur pain goes away and u find out a straight answer to what is going on with u xxx mina hehe sorry bout the spelling lol to many meds … =-S
I’m 37 and it seems that everyone is put to prove that I don’t have TN. Every dr, dentist, everyone! All I know is that the medication is helping. Nothing else has. Done let people be condescending to you. You know what hurts. You know the signs. I had an oral surgeon tell me that I had to have one specific trigger point. I don’t. Sometimes there is a place under my eye that does it for me, sometimes it is along my jaw, sometimes it is a place next to my nose. All I know is that when it hurts, I can’t function