Quote:
Originally Posted by EE03
I hesitated to reply, but I see no one else has. I have both TN1 & 2(atypical). I have felt most of what you describe except that I do get fleeting pains in the tongue and in the throat, in the area of the sinus cavity(I can't explain where that is well enough, but if you google it, you should find it). Anway, some theorize that there is a pre-TN period which is the beginning of the demylination of the nerves. My TN started this way, with bouts of unrelenting pain which would go on for months at a time. Sometimes the pain felt like I was being stabbed repeatedly in various parts of my face. Then I noticed sensations of things moving on my face, when nothing was there. Then came the feelings of pressure on parts of my face, as though someone stuck a vice on my temple and kept increasing it, minute by minute, and then just left it there. And there are the drilling, boring pains that feel just like that, and my teeth feeling as though they are on fire, burning to no end. And, before and during all of this, all the tooth pain to teeth which had root canals done to them, but still I was encountering excrutiating pain. Those are some examples, but this @%&(%#@ condition continues to present new scenarios to me all the time. I should also add that I have it bilaterally although one side is a lot more active than the other.
It took a long time for me to get diagnosed. I had conflicting opinions from a couple of doctors and was constantly being told I had sinus infections, when it was actually TN. I hope my description helps you.
Take care, ellena
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I am SO glad you replied Ellena
I have the dentist EMG saying "Trigeminal Neuralgia" from a year ago. The additional sensations you described "I have felt most of what you describe except that I do get fleeting pains in the tongue and in the throat, in the area of the sinus cavity(I can't explain where that is well enough, but if you google it, you should find it)." <~~~ EXACTLY what I experience as well.
I also have Multiple Sclerosis. I know that 1. TN with MS is not unheard of, but not 'common', and 2. A diagnosis of ATN with MS is even more unheard of, as you can imagine. But I do believe this is what I'm facing.
When my mouth 'pain' went away (I thought BMS - burning mouth syndrome) after I quit smoking, it was probably due to quitting sure... i was irritating the heck out of my mouth! But then out of nowhere, I begin Depo Provera, and BAM, comes the return of TN/ATN sensations and pains. Plus the mouth began to burn again, in the area of the cheeks (mostly little lightning bolt stabs off and on), and in the tongue and throat.
Mine is bilateral as well. Left side is MUCH more active than the right side for me. Which side is it for you?
Should make for an interesting conversation with my neurologist on Monday when I see him. I am considering Nortriptyline (low dose) as a possible preventative. What medications have you found that have helped you? Or are you medication free or natural?
Edit: my first 'meeting' with TN was type 1 I'm pretty sure. It was episodes that lasted for a few hours (till I could pass out from the pain and exhaustion basically) of stabbing pain that made me curl into a ball on the floor. This happened when I was on Depo Provera years ago... I'd say 4 or 5 now. Possibly however this could have been my onset MS 'attack' or symptom, since in a % of MS cases, TN attacks (type 1 I believe more so) are seen as the first symptom. I had almost a type 1 incident the other day, but thankfully, while it stabbed in the left side a few times, it didn't bring me to my knees. I find a hot soak when I get terrible head pain really helps to calm it down in severity though.