No set diagnosis of TN but experiencing the pain of TN...anyone else like this?

Posted , 6 users are following.

I’m 26 years old and first expeirenced pain in my face/teeth almost 7 years ago. I see a neurologist regularly and have had 7 MRIs however some of symptoms are spot on for TN and others aren’t so my neurologist is struggling to fully make a diagnosis. 

I take 75mg of pregabalin and 40mg of amitriptyline every night which helped initially but since I’m now having flare ups pretty regularly I’m worried that they are no longer working. 

The pain I get is tooth ache like pain in one tooth which then spreads up my face into my eye and ear and stays there for at least 45 minutes (not normal for TN) the pain is very intense and I find myself not being able to do anything whilst having a flare up. 

Has anyone else experienced similar in the fact they haven’t been given the official TN diagnosis?  My Neurologist always comments on my age and how ‘young’ I am to experience pain in this way. 

Hoping to get some response as I can’t find anything else like this online. 

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9 Replies

  • Posted

    It's not typical to have TN at your age,according to a top Neurologist in NY. You mentioned you had 7 MRIs. What did they find exactly?

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  • Posted

    I was 19 years old when I was first diagnosed with TN. I am 25 now. I had the MVD surgery done in August 2017 and have been pain free ever since. I had an extremely hard time finding a doctor that took my pain seriously. It was hard getting diagnosed with TN because I was so young. The neurologist I was going to had many TN patients and I was the youngest she had ever diagnosed. I was on medication for years and took everything you can imagine. Your body eventually becomes used to the medication and it won’t be as effective which is why I had the surgery. Find a doctor who takes you seriously. I went to several! Also, I had 2 MRI’s done and 1 MRA done. All came back completely normal. When i had my surgery, the neurosurgeon said that 2 blood vessels were on the trigeminal nerve. They were so small the MRI didn’t catch it. Just because the MRI’s are normal and because you’re young doesn't rule out this diagnosis.  I hope you don’t have this. But if you do there are plenty of options. Good luck!!

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    • Posted

      Because I haven’t had a set diagnosis I feel like it’s not going anywhere. I cant get definite answers because we don’t fully know what it is so I’m just taking pain killers and having tests that aren’t showing anything. My neurologist doesn’t want to say it’s TN because I don’t have all the symptoms, it’s like I have multiple cross overs with different conditions. 
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  • Posted

    Hi does your tn stay or go away I’m tempted to have Surgery now because my medicine seems to lose strength and always  have to  up it but my Neurosurgeon says I have two veins on top of  my nerves but is unsure and I’m unsure if I want to do it. it’s 50-50 not a  guarantee it will work an my atypical pain is constant pain never ending 
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  • Posted

    I understand. It can be very complicated to deal with. Trust me I know... I've had T.N for over 23yrs. Have you tried taking Magnesium Glycinate? You can do 400mg 3 times a day. It seems to work pretty good for me. I would get some accupuncture done with the electro-stimulator that clips on to the needles for more impact to the nerves. Try that before you try gamma-knife. I wouldn't jump to surgery right away, although that is a last resort wink 

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  • Posted

    Chloe...my husband has suffered from TN for about 10 years.  He was put on prescription after prescription...the only help he ever got was from prednisone ( which is a steroid) but as soon as he stopped it as that can not be taken very long.  His pain was atrocious and it interfered with his entire life as sometimes he would have four flare ups a day- other times he would have one.  Some were hours long- others 2o minutes.  Out of desperation, as nothing was working, I started looking up natural substitutes for these medications.  I found DONG QUAI ( sold at a health food store) was a substitute for prednisone and CURAMIN helps to control pain and inflammation and pain.  After some trial and tribulations with experimenting with a salve called comfrey cream ( a great muscle rub- but did not help the pain of the TN- but still not a wasted purchase so that is good), then we tried spraying on magnesium flakes and letting that set on his legs, arms, and stomach one hour every morning to absorb into his system, then we tried a mixture of Organic cayenne pepper and coconut oil mix to rub on the painful area ( you can tell we were desperate) he tried these two pills three times a day....Dung Quai and Curimin (extra strength).  Well lets see, he took them three times a day and I would say within 5 to 7 days he stopped experiencing flare ups.  We proceeded cautiously as, really, who would believe this would help...so not to tell anyone he was getting relief- they would think we are crazy.  But one week went by, two weeks, three weeks...I know I started to relax a little bit.  It has probably been since February or March....no flare ups.  He has cut the pills back to two a day.  He has had blood work two times as he told his doctor what he was taking.  His blood work is coming back fine...actually great.  I hope this will help you and others.  I know one thing can help one person and not another but I know he was suffering and myself right along with him.  Our entire life was controlled by this disease.  If you or five or ten or one hundred people, or more tried this and it helped them as it has my husband, it would be wonderful.  It is a horrible debilitating disease.  No One should suffer and go through what I watched my husband experience.  Good Luck!   
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  • Posted

    Hello! I have been having this same sort of thing if you are meaning a throbbing kind of toothache! It started as jaw pain or tooth pain on the right side that would come and go. It is not sharp. It is more of a pressure, digging, throbbing pain. Sometimes it is not pain and more of just a pressure or a "feeling". I also regularly feel it on the roof of my mouth on the right side or almost like it is behind my nose. I also sometimes feel a tickling feeling in my right ear canal (I do not know if that is related or not but it seems to be). It is now occurring behind my right eye and behind my right cheek. Another way to describe it is that my face is almost being pulled. It comes on randomly. It is definitely annoying to me and distracting, but I wouldn't say it is unbearable yet (however, I am scared that it could progress to that). I have seen a neurologist (about 2 years ago) and had an MRI and other things done. In the beginning, I was terrified of a tumor or MS, all the more well known things people might usually worry about with these types of symptoms. I never even considered that this could possibly be an atypical form of trigeminal neuralgia. I am currently waiting to get a CT scan of my sinuses from an ENT. I had recently considered that maybe it is my sinuses because my right nostril randomly closes up. When I go back, I will ask about whether this could be trigeminal neuralgia and if I should go back to my neurologist to investigate further. 

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    • Posted

      Just to clarify, while the pain/pressure/feeling does jump around, I am currently experiencing it intermittently in all areas I described. My jaw pain and tooth pain has not stopped. It is still occurring.
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