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  • Still waiting full dx. Is this a familiar beginning?

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    Old 12-20-2016, 03:02 AM   #1
    PixiePainter
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    Unhappy Still waiting full dx. Is this a familiar beginning?

    Hi all. This is the best, most active board i've found for TN. I am so glad I found you! Wondering if my story is close to anyone else's?

    This is my first experience with what I'm told is TN. I'm a fairly fit, fairly healthy 28 year old gal (with some other weird symptoms that started about 3 years ago).
    In October I started getting more sensitive teeth on the right upper side of face. Mainly the last three. The second one in was the worst. A few years ago I had a rather large filling done in that tooth, which never made the cavity feeling go away, but sometimes that takes time so I thought nothing of it. My gums by that tooth on the inside side on my mouth also felt tingly/scrapey all of a sudden on and off, but I chalked it up to the dentist getting too close to my gum line. The scrapey/tingly feeling would come and go and i'd brush it off.
    Until I started getting really bad mouth pain in my whole right side, intermittently. Mainly it was my gums. After a few months of this happening, it got worse. I thought for sure I had an abscess in that one bad tooth. I ended up seeing two dentists in 2 days at the same office who couldn't find anything but a "tiny cavity" that they said they wouldn't otherwise fill, it was so small. Part of me wonders if they didn't really find a cavity at all, but didn't know what else to say. They did tell me that if it didn't go away to call my doctor.
    I was already having attacks at this point, and they just kept getting worse. The pain spread into my lower cheek above those 3 teeth and up into my temple, and above the front right tooth then up my nose, One time, the worst time, it went into the left temple as well and I actually thought I was having an aneurysm or something, the pressure and pain was so intense. Went to the ER. At this point I had already seen one doc who gave me 5 seconds of her time, told me I had TN and sent me home with Tregatol. The pain was still bad. Ended up seeing 2 more docs. for a total of 4 counting my GP. All said TN, but none really pushed an MRI, as i'm young and "healthy". I still got a referral and hoping to get answers. The Tregatol worked I think (or it just went away?) but it incapacitated me. Took Baclofen instead for a few weeks.

    I now have no attacks or any of the extreme pain I had before, but my one tooth does feel weird and sensitive, along with a few other weird things.. It almost feels like there is something pushing my tooth out. Like I can FEEL every bit of that tooth. It is the weirdest feeling. When this happens I don't want to eat on that side. I still feel like there is a cavity but i'm hesitant to go back to a dentist right now. I also get this weird sensation on my tongue that I can't really describe. My right eye sometimes feeling like it's squinting, like I need to open it more. I find myself rubbing the corner of that eye a lot. my upper cheek right under that feels funny sometimes too. But these are only very slight feelings. I feel as if i'm losing my mind a bit. I don't think the people I work with even believe what is happening to me, because i'm fine for the most part now, if not just still feeling a little odd from all of this. It's really isolating and discouraging. I really hope this appointment goes well, whatever that means in this stage. Also, one of the doctors said that it could have just been shingles and it could go away? If that's possible would I still have these sensations? I've had shingles before, if that makes a difference. It's just all so confusing as it started in my tooth, and i don't want to let something bad go if it is the tooth. This has been an annoying obsession for the past two months trying to figure this out and not be anxious.

     
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    Old 12-29-2016, 11:08 PM   #2
    ScarlettA
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    Re: Still waiting full dx. Is this a familiar beginning?

    No, it doesn't sound weird to me, because I have similar symptoms. I have pain in my gums and cheek, as well as tingling feeling in my teeth on one side. The pain or strange feeling, seems to move around my mouth on both sides. It's so hard to explain. Dentists are hopeless, and look at you like you're crazy, or blame it on TMJ. I went to a ENT doctor before Christmas, on the 21st, and he sent me for a CT scan of my face, neck, and head. He told me if there was anything worrisome on the scan, he would call me to come in. So far he hasn't called me, and tomorrow will be the 30th! I hope that's a good thing? Either way, I have a regular appointment with him on Jan. 12. I could sit here all night, trying to explain this feeling in my face, but there are no words to describe it, so I'm going to go to bed, and hope I get a decent nights sleep.
    I hope you're feeling better?

     
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    Old 01-12-2017, 01:04 AM   #3
    Voldo
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    Re: Still waiting full dx. Is this a familiar beginning?

    I'm currently also battling a weird issue that is either trigeminal neuralgia or a dental thing or TMJ. My doctors can't seem to agree. At any rate, I can relate to a lot of what you're saying in terms of pain and weird sensations, as well as the isolating/discouraging part. I've just been sitting in my kitchen alone crying because it hurts too much to sleep and I don't know what to do. You're not alone though and I hope you find your answers. Please keep us posted.

     
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    Old 02-21-2017, 05:01 PM   #4
    PixiePainter
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    Re: Still waiting full dx. Is this a familiar beginning?

    Hi guys! I hope you are all doing well. I'm sorry it took so long to reply, i just had my MRI last night and waiting for results. I have been doing better, or possibly I have just found my new "normal". I haven't had any tingling in my mouth for about a month (Hallelujah), sometimes I still get a squinty feeling just under my eye. Still lots of things I have a hard time describing, but i've been doing better about not worrying too much about them. The worst is still just that really odd feeling in that one tooth, still drives me nuts and makes me feel like I should go to the dentist. Almost feels like the filling in that tooth is coming out but the dentist didnt seem to see anything. I never know when it will happen and the feeling comes and goes. It could be completely uncomfortable for a little while and i'll be convinced i need to see the dentist because it feels SO WEIRD and almost SORE but I can't tell where in the tooth it's happening, and then POOF, gone like it never happened. I will probably still go back and get it checked again if this MRI is clear, just to ease my mind. One thing that seems to not be going away is the pressure in my head when I wake up. I feels like i'm sleeping on a hill with my head on the bottom. Like i've been sleeping tipped upside down. Very exhausting waking up like that which still makes me think TMJ although I don't have pain in TMJ areas or really pain at all, just a fullness in my head. I really hope you guys are feeling better or have gotten some answers!! Please update me!! Thinking of all of you!

     
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    Old 02-21-2017, 05:06 PM   #5
    PixiePainter
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    Re: Still waiting full dx. Is this a familiar beginning?

    ScarletteA: How did your appointment go on the 12th of January? Sending you love and hugs!

    Voldo: I hope you're doing okay. I know the pain is so so bad. I do hope you were able to find a doctor who could give you something to help!! Please let me know! It's so much harder to deal with this alone!

    Last edited by PixiePainter; 02-21-2017 at 05:08 PM.

     
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    tooth pain, tooth sensitivity pain, trigeminal neuralgia



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