Progression of "Disorder"

General General TN & GPN (Old Site)
1

In November, before diagnosis of ATN, I only had pressure in my face. I've had SO MANY more things happen, only in 4 months. Is this true of any other people? It seems to have gone from zero to sixty in .5 seconds.

Went from pressure, to pain, to dizziness. The pain started in maxiliary sinus area, now it is around eye, forehead, maxiliary sinus, top teeth, and sometimes even lower teeth.

And now, I am getting temple pain, sensitive teeth, it hurts to put on make-up. Smiling even is an issue sometimes. I also have long hair. Only past my shoulders, but long and thick and heavy. My hair is starting to affect my TN. Pony tail (high or low), straight, french twist, anything seems to affect my TN. I hate short hair, but I hate TN worse. I cried tonight about my hair... not just because of having to possibly cut it (going to try thinning it first), but because of the TN changing my life so much, so fast.

My cognition impairment has increased too. Before medicine of ANY kind, I would sometimes momentarily forget things. Now, that too, has become more frequent. I used to be good in math, spelling, typing, grammar, and lots of other useless stuff. Now, I almost feel like a dumbass (excuse my language).

I am now on Neurontin though. I seems to decrease the intensity of the pain surges, but makes me pretty tired at times in the day (at 300mg, 3x day). And... not just the drowsy tired. It is a "I haven't been to bed in 2 days" tired.

And the weather, OMG. The drastic changes in the weather... are awful! Whether it is going from rainy to sunny or sunny to rainy... the change in the barometric pressure HURTS! The meds don't seems to help at all with the nutty weather. I live in Nebraska... and if you know Nebraska, you know the weather changes ALL the time. We now are graced with an early Spring with lots of weather changes. High winds, tornadoes, rain, etc. Ought to be good!! NOT!

I haven't been at work for a month. I work for a super company and haven't gotten fired yet. Applied for short term disability until I can (hopefully) get this under some control (if not, Long Term Dis). I need to exercise at least a little... but I don't.

My neurologist wants me to go to a massage therapist for my face. Uh, sometimes just brushing against or slightly scratching my face hurts... what's a massage going to do?? I know my own limits, so we'll have to see.

Sorry about venting... just want to know about how fast all of your symptoms may have occurred.

~S

2

Your TN pain can get worse sometimes. During such time , all meds seen useless . Your face will be very sensitive to touch , so a massage will ‘kill’ you. All these symptoms appear within six months after a pain in my lower gum was felt .The pain level goes down to a bearable state after about two to three months. After that the pain level will go up and down in cycles.
TN definitely affects our lives . There are months that I do not wash my hair, apply face cream and make up .
Feel free to vent your frustration . Take care.

3

Although TN is a progressive disorder for many people, one of the confounding aspects of that disorder is that thre is no single course of events. Each patient is an individual. That said, I would advise you to ask your neurologist whether he would send a relative who has TN to a facial massage therapist, considering that you have multiple pain triggers in your face.

Regards

4

I agree about the massage thing, I cant even imagine it! I found at times even the slightest touch of one minute hair on my cheek to send everything over the edge. All of the areas of pain you describe are pretty much the same as I had, especially the lips for me and right sinus. I couldnt put moisturizer on or even blow my nose without and explosion of pain so I cant imagiine getting it massaged. I have also always had very long hair, and it is the one thing I actually like about my appearance. But I never cut it, just kept it out of my face. Although, as I work outside all day, even the slightest breeze would trigger, or if a few wisps of hair blew against my cheek it would trigger as well. You choose for yourself what you can endure and what makes you happy. Over seven years of struggling with TN, I found it was always a war between the TN and myself ( I mentally seperated the TN as my enemy, focussed on the fact that the pain is just a message not actual injury) and I used my own stubborn will to not let it take away from me, unless I decided to let it go. We need to always remember that this is OUR life and the TN , although very good at making our days agonizing, cannot take away from who we are inside nor take away our right to feel love and happiness. Its a constant battle, and sometimes I've lost , but I keep fighting. I wish you much strength and love in your battle. Never give up, we all are getting through this together. Love and light :)