I know exactly what you are saying. I would hate to see what he says about my daughter. Lily has had TN since she was 18 months old. Doctors just need to be educated that it is not just a geriatric disorder. Request to have a thin slice fiesta MRI. It tells more than just a MRI and MRA. Lily is having the thin slice fiesta MRI done in a week because of continuing issues with TN.
i also have been told by several neurologists and one neurosurgeon i did not have TN. my age was a factor as well, as i am in my early thirties. this is a diagnostic pitfall we as patients (and women) can fall into with misinformed doctors who are practicing with outdated notions. TN can affect anyone at any age. it is important we educate ourselves so that we do not end up misdiagnosed and mistreated.
get a new neurologist, and quickly.
the researcher.
Enriqueta,
The words, “too you to have TN”, make me sick to this day. If any doctors tell you that, please either think of my daughter or mention it to him. She began with TN at 18 months old. She has it bilaterally. She is the youngest diagnosed and treated with an MVD by Dr Ben Carson. It was only in Dec 2009 that I diagnosed her myself and presented all the information I could find to her neurologists. Everyone else couldn’t or said she was too young. Nothing should be limited to an age. My child is proof. Good luck and God Bless!
I totally understand what you are all saying, i also diagnosed myself after researching the internet. And prior to this the maxillo facial unit just told me that it was usually over 50’s who got this and that the pain was so extreme it made their heads jerk… well just because my head didnt jerk they didnt want to diagnose me with it!
Ive suffered for 4 years now and have yet to see a neurologist, however my aptmt is in 2 weeks! At last!
Also, one of my doctors who I have only seen a couple of times mentioned within a conversation of this subject, and me talking about cutting out Aspartame and caffeine, that the medical books will have to be re-written as she has seen many diseases, including TN and types of cancer, occurring in younger people whereby it was unheard of say 40 years ago. She thinks that diet must be a big causation factor due to all the ‘fast’ meals now consumed compared to previously… food for thought (no pun intended!!!). Also what a nice change to find a doctor willing to listen and with common sense 
ooopppssss!!! Meant to say “you are too young”. 
Suzanne Mitchell said:
I totally understand what you are all saying, i also diagnosed myself after researching the internet. And prior to this the maxillo facial unit just told me that it was usually over 50’s who got this and that the pain was so extreme it made their heads jerk… well just because my head didnt jerk they didnt want to diagnose me with it!
Ive suffered for 4 years now and have yet to see a neurologist, however my aptmt is in 2 weeks! At last!
Also, one of my doctors who I have only seen a couple of times mentioned within a conversation of this subject, and me talking about cutting out Aspartame and caffeine, that the medical books will have to be re-written as she has seen many diseases, including TN and types of cancer, occurring in younger people whereby it was unheard of say 40 years ago. She thinks that diet must be a big causation factor due to all the ‘fast’ meals now consumed compared to previously… food for thought (no pun intended!!!). Also what a nice change to find a doctor willing to listen and with common sense
Lily’s Mommy said:
ooopppssss!!! Meant to say “you are too young”.
Suzanne Mitchell said:I totally understand what you are all saying, i also diagnosed myself after researching the internet. And prior to this the maxillo facial unit just told me that it was usually over 50’s who got this and that the pain was so extreme it made their heads jerk… well just because my head didnt jerk they didnt want to diagnose me with it!
Ive suffered for 4 years now and have yet to see a neurologist, however my aptmt is in 2 weeks! At last!
Also, one of my doctors who I have only seen a couple of times mentioned within a conversation of this subject, and me talking about cutting out Aspartame and caffeine, that the medical books will have to be re-written as she has seen many diseases, including TN and types of cancer, occurring in younger people whereby it was unheard of say 40 years ago. She thinks that diet must be a big causation factor due to all the ‘fast’ meals now consumed compared to previously… food for thought (no pun intended!!!). Also what a nice change to find a doctor willing to listen and with common sense
I can totally relate to this. I had severe pain and went to several well trained oral surgeons who told me that might have a sinus infection. I’m in my 30’s and told I look to nice and young to be in pain. All I know is the pain is real. I finally did find a doctor who said I probably have neuralgia. I have not started any treatments yet, I have basically spent the last several months going from one doctor to another.
The first few times the pain hit me was just that once or twice. It didn’t start out the way I live today. It was only on the right side of my face and was only in my jaw. Making me believe it was my teeth. I would have months without any pain after that first few times. Then it progressed every time it came back. Until what I deal with now. Since that time I’ve seen 2 dentist, 5 gp’s, er doc, 3 neurologist and a load of test and drugs. I was sent to another (4) neurologist who told me because I had it on both sides it could not be tn. He said alot of other stuff as well which proved he didn’t know enough to be giving an opinion. I was in alot of pain that day and my bp was off the charts and this man allowed me to leave his office in that condition. It’s a wonder I didn’t have a stroke getting to my gp. On my way out of his office he stated I would have to go to another state to seek help. Needless to say my gp was furious. I don’t have “trigger points” per say. I can’t sleep with a fan blowing on me and can’t allow anyone to touch my face. But, as far as one thing that gets me every time. No. I hope for your sake it is something other than tn and it will be a easy fix. Because this is no way to live. I hope this helped some.
Laura
Hi,
I am also 33 yrs old and have TN. I was told all along by every dr that I had it. however, I was told I was too young to have it and that I prob. have MS and the root cause of it. I have been scanned like crazy and no signs of MS.
I was also told I was too young to have Osteoarthritis. Sure enough- OA showed up on a bone scan and it’s a very bad case esp for my age. So, never let any Dr say you are too young for anything!
I take Gabapentin like you. It took a few weeks to really begin working and then a few months after that It seemed to take care of it completely. There are still a few break-thru moments. I cannot seem to find a Neuro that will prescribe the needed pain medication. My last Dr called my husband saying he didnt want my husband mad at him if I became addicted. so, I moved on to look for a new Neuro and never found one. It has been 8 months though since I have had a major attack. Praying that I didn’t just jinx it. LOL!
I hope you find the help you need! Best wishes,
julie
Hi Enriqueta,
I live in Newhall also and I went to Dr Brian Gantwerker with Neurosurgery Associates in Valencia. They treated me very well and I did undergo MVD May 14.
I’ve been diagnosed for 6 years. I would recommend MVD in general. I can also recommend a local support group if you wish.
Please feel free to contact me anytime. This affliction is tough and I’d recommend seeking out as much support as you can.
Best,
Andy
Enriqueta Trejo said:
Hi Liz, I appreciate your response. Thank you for your good wishes. I will let you know, I have the exams next week.
Hi Enriqueta,
I live in Newhall also and I went to Dr Brian Gantwerker with Neurosurgery Associates in Valencia. They treated me very well and I did undergo MVD May 14.
I’ve been diagnosed for 6 years. I would recommend MVD in general. I can also recommend a local support group if you wish.
Please feel free to contact me anytime. This affliction is tough and I’d recommend seeking out as much support as you can.
Best,
Andy
Enriqueta Trejo said:
Hi Liz, I appreciate your response. Thank you for your good wishes. I will let you know, I have the exams next week.
hi Enriqueta,
I am 35 and have recently been diagnosed with TN. I too suffer on my right-side facial pain. FYI, 35 is considered young as well but it is not impossible for someone within our age region to have it. fyi, my trigger points are chewing and talking … and when it strikes, it gets really bad and i’ll end with tears and even scream if the pain is excruciating unbearable.
i am not saying our symptoms are similar. but i would definitely get a second-opinion. it is good to know what you are really suffering so you can treat it properly. All that said, I honestly do hope you are not suffering from TN.
Hi Lindsey,
I was reading your message and it sounds kind of like what I’m going through. I believe mine started with dental work and then having a tooth extracted. I had the facial burning sensation also. It was probably one of the worst pains I’ve felt. I finally had an endontist tell me that I have neuralgia and that I should see a neurologist. I’m wondering if you have had any luck with your treatment?
- Ingrid
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?