Hello, New with possitlbe TN

General General TN & GPN (Old Site)
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I apologize in advance for this long post. It is my first post here and I am lost and looking for answers. First off 39 year old male here.

Where to start? 3 years ago, I started with a tiny patch of tingling near my jaw/cheek area. It was weird but nothing that really concerned me too much at the time. I sort of ignored it. Flash forward to today and the tingling is now on the left side of my face for most days and in addition I now get what I would describe as "temple aches" and sometimes "ear aches" but not deep within the ear, it feels more cranial pain. Lastly, I sometimes get an intense stabbing pain on my tongue when I am just drifting off into sleep.

So I went to the doctor finally after 3 years and told him that I've had tingling and numbness along with ear pain/temple pain at times. I forgot to tell him about the stabbing tongue pain. He told me that it's likely Trigeminal Neuralgia. He did not refer me to any specialists at this time because I told him my symptoms were not severe. He said basically to let him know if I get worse and he will refer me.

So my question is, it doesn't seem like from what I'm reading that I have TN, though I could just be in denial. The reason being is that the pain on my temple/jaw is not stabbing/burning and from what I've read it is often pretty intense. Though I must admit that maybe I am just in the beginning stages of this disease. It's a little worrisome if it's going to get worse.

Lately, the right cheek has been also going tingly on me. From what I read, it's mostly one side that usually goes tingly/painful. The right side started acting up about 2 weeks ago which is what prompted me to see my general practice doctor.

So, I know you all are not doctors probably, but does it sound like I do have Trigeminal Neuralgia? I keep wondering how I got it. I did get slapped really hard in the face about 4 years ago that caused a concussion (sister was drunk and combative and I was trying to help her get to her house safely). I have been wondering if that strike to my temple so many years ago could have caused such damage to my facial nerves?

I've also read that certain drugs like Statins, Ciproflaxin, Benzodiazapeines, etc. can cause nerve problems/tingling and numbness either by taking them or by not taking them. So could it be drugs causing this? Lastly, my blood pressure seems to affect this feeling. I feel like when my blood pressure is high, the tingling is worse. When I am at a good level, it feels normal.

So many questions and I'm sure I will be told to see a specialist, which I will. I just am reaching out I guess. Thanks all for listening even if you dont respond.

J

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Sorry, I must add. Some days I don't feel anything at all. Which is baffling to me. I go between feeling completely normal some days, to feeling intense tingling on left side, my lip feels like it's quivering even though it's not, temple pain going down my face and even down to my neck. Just don't get it.

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Hi, mine started about three years ago as well. And it started out as a burning sensation in my gums and the side of my tongue on the right side of my face. I did have some jaw pain as well but the most noticeable irritation was the gums. I went to my dentist and was referred to an oral surgeon. I do have a hardened preauricular lumph node on that side as well which was actually why my dentist referred me. I actually thought that was what was causing the jaw pain. It's still there and I'm still not 100% convinced that that has nothing to do with it but I did have an MRI and the surgeon says it's not related so I just need to trust that. Anyway, he didn't have any answers as far as the gum/tongue pain so he gave me a cortisone mouth wash and viscous lidocaine and I stopped pursuing it. It did eventually go away. Well it came back with a vengeance this spring. My gums burn and my jaw hurts but now my teeth hurt and when it gets really bad my cheek, ear and temple hurt. It is still only on the right side but it is constant. This time it is truly interfering with my life. I can't chew on that side, I can't pull my hair up, it hurts to wear my sunglasses, sometimes even talking aggravates it. I've noticed also that cold hurts it like when the AC in my car hits my face. I went to my PCP and first she thought it was just lack of sleep because my overall health hasn't been great since spring. We fixed the insomnia but my face kept getting worse so I went back again and she finally took the face pain seriously and told me about trigeminal neuralgia. My symptoms are consistent with type 2 but from what I've noticed from reading here is that is seems that it affects everyone differently and sometimes a cause can be determined like dental problems or facial trauma or it can just happen out of nowhere like me. I've come to the conclusion that even if it's not trigeminal neuralgia exactly that I have I do suffer from chronic facial pain and it is real and many more people than I ever imagined suffer from this as well. I'm in the process of trying to figure out how I want to move forward with this. I was prescribed an anti-seizure med called Gabapentin and I'm sure this or another like this will be what you are offered. I'm scared to take it but I'm probably being on the crazy side of that. I do think you have some sort of nerve issue and it's worth pursuing at this stage since I know that it can get worse. I'm still learning about this since I got my diagnosis just a few months ago but I wanted to respond to you because I had times before I knew about this that I thought I was losing my mind. It just didn't make sense to have pain like this that never goes away for no reason. To be honest it still doesn't make sense but at least I know I'm not crazy or alone. I hope this helps and good luck.

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Thank you Bells. It helps not to feel alone. And yes I also thought I was going crazy for the past 3 years. I really did my best to just ignore it, thinking it would go away. And it does go away some days, but other days it's just there.

Sorry to hear about your story and hope you find some relief.

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Best advice… Go to GOOGLE IMAGES and spell out TN .

Then go to GOOGLE IMAGES and spell out atypical face pain

That might be a clue…sometimes helps…print off best one if any…let us know what you think

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I do get tingling sensation at my temple, around the corner of my eye area, and on the scalp behind my ear..it's not the same horrible pain i get in my face/mouth..but it does seem to be related.

I agree with KC that you should have a look at that stuff she pointed you to.

Also, as i'm sure you've noticed if you've read much on here, everyone is different...some of us have symptoms that other don't..and to various degrees. I'd definately keep in touch with that doc and keep them informed.

It helps me a lot to keep a daily journal about my pain/tingle/etc...and what helped and/or didn't ..and use that to talk w/doc.

I truly hope you don't have TN, but if it turns out you do...stay here and keep posting, and know that you are not alone.

~Mistee