No official Diagnosis-Is this really TN??? PLEASE HELP

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I apologize in advance for the long story...this has been a nightmare. In May of this year, I had 6 fillings done on one side of my mouth. I work for a dentist as a medical insurance coordinator and up until starting this job in August, I've never been able to afford to go to the dentist in my adult life. I am 28. So, I had the fillings done since he said that he could do all of them in one go(he even offered me sedation, but I declined) and had pain pretty much as soon as the aneasthetic wore off. I continued to have a low-grade stabby pain for some time. I was hesistant to tell him about it because I am prideful and I thought maybe it would go away, but it didn't. So I told him about it and he told me that I may have pulpitis because we did so many fillings at one time. I decided to let it be and just ate my weight in ibuprofen for several more weeks. The pain was manageable, occasionally it would get worse but then it would subside. In late June, I had a routine cleaning at the office and the hygienist asking me if I was having any issues, I told her about the right side pain that I had been having. My boss, the dentist who had originally done the fillings was not there that day but the other doctor in the practice was. He did an exam and told me that 3 of the fillings did not look like they had been done properly. He told me that this happens occasionally, sometimes the material doesn't dry properly and the margin of the filling is off. He scheduled me to have the fillings redone and prescribed me a course of steroids and atibiotics, just in case I had an infection that he couldn't see. I took the steroids and antibiotics as prescribed and I did feel a slight improvement, which I attributed to the steroids. Unfortunately, the daily pain( I would say it's a 2-4) came back and I just really didn't want to say anything about it. Partially, I was afraid I might need a root canal and I really can't afford any extra expenses right now and they don't do root canals on molars in their office and told me that if I needed to have a root canal done then I would be referred out to an endodontist and partially because I didn't want to complain. I endured the pain for about 6 weeks, even went on a vacation, it was bothersome, but manageable. I continued to take 4 ibuprofen probably at least 3 times per day. Then, on Sunday, August 4th, I woke up with much more severe pain. I took ibuprofen(even though, I don't think its ever done much) and tried to ignore it but as the day progressed, the pain became more and more severe. By 8:00PM that night, I thought I might die, it hurt so bad. Normally, the pain is just focused on either my upper or lower right side of jaw including the teeth but this was different. All of the teeth on the right side of my jaw were SCREAMING and I could feel pain in my ear, cheek, lips, chin, nose and eye, all the way up to my right eyebrow. I don't know how to describe it, it was unreal! I couldn't move, talk, eat, sleep, or even lie down and found myself just sitting upright in bed rocking back and forth and grunting from the pain. I wanted to call in sick to work because of how awful it was, I was dizzy and nauseated from how bad it hurt but I decided to go to work in the hopes that the dentist could look at me and maybe I did need a root canal and the pain would be gone once that was taken care of. I asked him to take a look at me that morning and he did do an exam later that day, it was very difficult for me to focus on anything with how bad it hurt. He took a bunch of x-rays and did some tests with hot and cold and percussion and all of my responses were negative for any kind of dental issue. There was no swelling, no signs of infection, and nothing abnormal on my x-rays. He told me that he wanted me to go to the endodontist to rule out a tooth issue because he is not a specialist and she may be able to see something/find something that he didn't. I made an appointment with the endodontist. I went back to my desk and continued to try and work until about 3:00PM when I told him that I needed to go home, this pain was unbearable and I was really not functional. He wrote me a script for Norco(hydrocodone) and told me to go home and try to get some rest. I had not slept at all the night before and was completely drained and exhausted. I took the Norco as soon as the prescription was ready and had already taken 2 doses of ibuprofen 800mg that day. The pain continued and did not seem to be helped at all by the Norco. My appointment with the endodontist was at 8:00AM the next day and I only slept maybe 2 hours from shear exhaustion on Monday night. She did pretty much the same tests as my boss/dentist and could not find anything wrong either. She was very kind and told me that she knows I am hurting, I was sobbing in her chair, and that she is going to help me find some relief. She called my dentist/boss and they agreed that she would prescribe me flexeril in addition to the Norco for the pain. She told me that while she doesn't feel that this is a tooth issue, she thinks maybe it could be TMJ. My dentist/boss's wife is also a dentist and she specializes in treating TMJ/facial pain/migraines, etc. with a program of massage, cold laser, jaw deprogrammers, and a bunch of other stuff so they made me an appointment with her that day. She did a cold laser treatment but didn't want to do anything else that day for fear that it might make things worse. At the end of my treatment, she told me that she thinks that I may have Trigeminal Neuralgia and I need to see a neurologist because she cannot treat or diagnose me for this kind of condition. I did not go to work that day, I stayed home and took pain meds round the clock and tried not to come unglued. The pain was still very bad but it seemed like it would come and go and was not as constant as the initial, unrelenting death pain of Sunday and Monday. I slept just under 4 hours that night, waking up every 2 hours or so. I went to work on Wednesday because I cannot afford to miss this much work, I need my pay to survive. I was in pain most of Wednesday, but it was more of the low grade with probably 5 or 6 really bad "attacks" that brought me to my knees. Today is Thursday, August 10th and I was able to sleep for probably 12 hours yesterday/this morning and I only woke up twice during the night and took more pain meds. I went to work and only felt a bad twinge once on the way to work(as the wind from the car window blowing on my face was irritating me) and then at lunch time when I tried to eat some chips and salsa that were left over from a staff meeting the day before. Otherwise, I have been completely pain free today. The only thing is that when I bite down, there is one tooth that emits a sharp pain...and now I am back to wondering again if there really is something wrong with my teeth. I talked to my mom on the way home from work today(I've told her all about what is going on) and I told her that I feel like I am crazy! I don't understand what is going on!? How could it be so terrible that I felt like my head was going to explode, that I would rather die than continue to feel like this and then it's gone?! Like nothing ever happened?! Am I crazy?! Am I going to feel this pain again?! I'm terrified of it coming back. I have my neurologist appointment this coming Monday but now I feel like a fool for keeping the appointment because I am no longer in pain. Is this Normal? Has this ever happened to anyone else? I'm so confused and scared and exhausted from all of this and I just want answers.

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13 Replies

  • Posted

    Hi Amy, 

    I'm so sorry you are feeling this waysad! I completely get it. I feel the exact same way, in such pain I can't handle it then 2 days later I feel like a pretty normal human being with very minor pain. I had those exact same feelings, and told the Johns Hopkins doctor the same thing. His response was that TN is episodicand that is typicsl TN. However I would definitely see the neurologist to rule out anything else. They should do an MRI & blood work, they will be looking for something pushing on the Nerve. Hang in there!

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    • Posted

      Hi Patricia,

      Thanks so much for your response. Was there a trigger for you when you realized something was going on air did it just appear out of nowhere? Are you able to manage your attacks/pain? I'm really scared, I've been rationing the pain meds that were prescribed to me because I'm petrified of the thought of being in pain again without any meds but I'm also afraid of becoming dependent on any addictive medication. How often do you have them? How long do they last? Thanks again for your response.

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    • Posted

      I actually had Bell's Palsy back in 09/2015 and my pain started a couple months of being diagnosed with that. I didn't understand it for a while & just thought I was have huge monumental migraines that radiated to my face. I am the second person I know that has been diagnosed with TN after Bell's Palsy. 

      So it was either from that, or coincidental. I take gabapentin at night, and that helps me calm my nerves so to speak but I don't think t truly does much. However I'm on a much smaller dosage due to me getting weird "down like feelings" as a side effect. My biggest trigger seems to be emotional stress, stress or even alcohol oddly enough. 

      What helps: some how, ice helps me. I don't know if it's just the temp / feeling change on my face but it seems to help. The chiropractor also helps tremendously. It is probably the biggest pain relief I've had. I am prescribed Tramadol, and I don't see too much of an impact from that. I just take more gabapentin when I feel more pain or attacks coming on. My episodes last about 3 days then 2 days of lighter but still bad pains. The 3 days are debilitating. I get them anywhere from every 2 weeks to every 4 weeks. So I can go 3 weeks without major, 8 level, pain but I'll have tinges & 4/5 level pain up in my eyebrow cheek region ... as well as above my ear. But I'm lucky that I can sometimes go 2-4 weeks with out a major debilitating attack. 

      I am going back 9/05 to get an MRI with Johns Hopkins in Baltimore, MD (I'm lucky enough to live in the areA) and I go back to the surgeon on 9/21 to make my decision for the surgery as well. I'm terrified they won't see anything, because I too feel crazy that I feel relatively fine some days but then like I'm dying a week later. 

       

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  • Posted

    Hi,I feel so bad for all you are going through,the fact that the dentist did some of your teeth wrong,well,i wouldnt have been as understanding as you,and taking all the pain meds because you didnt want to complain,you have a right to complain,all those pain meds arent good for your stomach or liver. Anyway,I have a friend who believes her tn was caused by a dentist. Yes the pain can be mild to horrible,you need a diagnosis by a nuerologist so he can give you the right meds and explain treatments to get this under control for you. Stay strong and insist on fast apts and answers,Hugs!
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  • Posted

    Hi Amy - my dear, do not cancel your neurologist appointment.  I am now in my 11th year with TN and when it first began it was in my tooth area and would come and go,  I seen my dentist who took x-rays, clecked my teeth and said the pain was not from a dental issue.  I also seen 4 other professionals in the dental filed and they all ruled out TN.  Through time, the pain would increase more and more plis remain longer.  I then got to the point that the TN pain never left me.  For a few years now, I have had 24/7 pain.  Do not disregard your pain issue becauuse you are now in no pain.  It is very important you get to the bottom of this with a proper diagnosis.  If you have any questions, I would be pleased to answer them.  My very best wishes to you.  I should mention to you tht it was my family doctor who diagnosed me and I have seen many facial pain specialists.

     

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  • Posted

    Hey Amy!

    I am so sorry you're feeling like this. This is a great website to come to for support. TN can actually be brought on by a dental procedure so it's still very possible that you may have TN. I would in no way cancel your neurologist appointment. If you do have TN they can give you the right medication and it'll actually help more than any pain pill ever will. I've never gotten relief from pain medicine for this. She will probably give you carbamazepine (tegretol) to start you off with. It's a miracle drug. I've been on it for 5 years. I've just now become medication resistant to all of my medications and I'm having surgery on the 22nd. I truly hope you don't have TN because I wouldn't wish this on m worst enemy. However if you do have it, there are a lot of ways to control your pain. I've gone as long as 8 months with no attacks. It's all about the right medication. Good luck at your appointment! I truly do hope you find some relief soon. No one should be in constant pain 24/7. I also hope you get some sleep. It's awful when it wake you up at night. 

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  • Posted

    Hi AMY. I'm sorry that you are suffering so much, but I hope you are not going to have TN. I have TN for 21 years and I've got that over dental procedure. As our friends in this group told you to have an appointment with Neurologist. Also, if I were you have one consultation with another Endodontist that has more experience, might be is not really TN. Unfortunately, TN's pain is getting worse over the time but do not worry and do not be scared, with right Doctor and the RIGHT medication, is going to be controlled. (somehow and hopefully).

    Take care

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  • Posted

    Hello Amy, I had a root filling and the dentist failed to measure the depth she was drilling and went to far. She seemed to get very anxious about it. I thought nothing of it at the time and was just glad to get out. Then a few days later wham!! I had all the same as you! I was perfectly fine before the the root filling! There is nothing you can do to blame the dentist because they deny that your problem can be caused by dentistry. I feel for you as it is a terrible pain that you would not wish on anyone. Hugs xx

     

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    • Posted

      Thanks for everyone's responses. I do feel like this may have been caused by the dental work but it is very complicated since I work for him and he did all of the work for free. I do feel fortunate that I haven't been encouraged to get any more unnecessary root canals done or anything like that. Hopefully, the neurologist will be able to help me figure out what's going on.

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  • Posted

    Hi Amy - my best wishes to you.  When you have your appointment you should have yur questions answered.  If you feel that the appointment was not to your satisfaction, you can always have a second opinion - you are entitled to it.
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  • Posted

    GO no RUN to the nuerologist!!!. The only way to tell for sure is to have a MRI to see if an artery or blood vessel has moved out of place and is pressing on the trigeminal nerve. If that turns out to be true you should be elgible for a micro decompression surgery on the offending nerve!
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    • Posted

      HI MALLORY I promised to myself do not do any surgery because I had very bad experience but you know I came to this site and reading the stories, now I saw your Note, can you explain please what the decompression surgery is, please? I really appreciated. 
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    • Posted

      It is what is referenced many times on this Blog.......MVD. My MRI clearly showed what was causing the horrific electrocution down one side of my face. All I can say is that my surgery was successful so far and it has been 10 months! I think I would have let them cut my head off and reattache it.  it to avoid that pain again. I had faith that God would take care of me and so far ll is proven true . If it comes back I will get on my knees again until I feel God will be with me through it all, and see what I need to do with his guidance!  Good luck and GODSPEED!!!
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