New here and lots of questions

General General TN & GPN (Old Site)
1

Hello, all.

I'm not sure if I am in the "right place" or not, but maybe somebody out there has experienced what I am going through and can tell me what is going on.

I'm not sure it is all connected, but I will give you some background info. Several years back, every three or four months, I would get a "hot poker" in my right eye. For a day or two before the worst of the pain would start, I would have a strange feeling on that side of my head. Then I'd have several days of the hot poker and then it would go away. I had no typical migraine auras, lying down made it worse. Eventually those stopped happening.

FFWD to this year. The beginning of the year, I started having facial twitching. First in my eye lids, (top and bottom), beside my nose, etc. Then that stopped.

In April I had a spot froze off the side of the bridge of my nose. By end of May, I started having nasal pain..inside on one side. If I wiped my nose, I would have the most intense pain shoot up my septum. Since then, for about the last 6 weeks, I get the weirdest sensations on the inside and outside of my nose. I can't wear glasses because it makes my nose just ache and throb. If I am in an air conditioned room, it makes it even worse. You know how your nose throbs when you come in from being out in the cold, winter air? it feels like that. It does not affect the tip of my nose, just down both sides of my nose. The twitch on the side of my nose comes and goes all day now. I feel like I have a headache "about to happen" most days. The roof of my mouth on one side right behind my front teeth always feels scalded. Sometimes I will wake up and my upper lip will feel swollen, but when I look it isn't. But it starts the throbbing in my upper gum and bottom of my nose. Sometimes I get these real intense pains all over my scalp or behind my ear.

Does anyone out there have any ideas? My GP mentioned TN, but when I looked at the websites about it, I couldn't make heads or tails. If it is, it sounds to me if it is, it is ATN. The pain is not intense, just constant, dull and achey.

Sorry for such a long post, but I am desperately looking for answers!

Thank you!

Deanna

I have been to my GP and an ENT.

2

Hi Deanna! I can understand your frustration with your pain and your inability to track this down. I am new to TN and am not able to provide much advice. One thing I did learn from my doctor is to be careful in assuming all symptoms have a common source. I was describing things to her and she found different root causes which really surprised me. I wonder if you could get a MRI and if that could see if there are any neurological findings? From what little I know it does not sound like classical TN but maybe as your read the different forums you can get different hints. Maybe do a Google search and look at where the trigeminal nerve is located and what sensations emanate from this. Good Luck Deanna!

3

TY. Definitely have been doing lots of research on it. That is how I came across bilateral atypical TN. I don't have much faith in our doctors around here. I've been dealing with things physical issues for over two years and they don't want to find the root cause of anything, they just throw pills at it and say "let's see if this helps."

4

I would go to Google Images and put in atypical face pain

See if any of those visuals pull at you.

I would see an ENT if you haven't already.

I would look at our list on our doctors tab above and see if there is a neurologist recommended near you.

Or find one in your area, or wherever you can drive --- might be next state over.... to find neuro who has more than a handful of TN/facial pain patients

Also look at the TNA website --- http://www.fpa-support.org/

Keep searching!

5

Hi there, as you know I am not qualified to diagnose you, but I have read thousands of TN stories and yours has similarities to many I have read. That does not mean that it is TN of course. We can be hard on Dr’s, but we have to try to remember that Dr’s do struggle with rare illnesses, simply because they are rare. I wish you a speedy diagnosis and that you can gain help soon.

6

Thank you all for your replies. Oddly enough, today I had the one sided pain..down the side of my nose and deep in my ear. I will definitely look at the websites suggested. Oh and ,yes, I did see an ENT...four times already in the last six weeks. All I got out of that was four more bills.