Looking for stories of early symtoms before diagnosis

I am here because I would like to know if any members experienced "pre-trigeminal neuralgia" This is defined in an articles by A. M. Kaufmann & M. Patel for the Centre for Cranial Nerve Disorders, as follows:

" Days to years before the first attack of TN pain, some sufferers
experience odd sensations in the trigeminal distributions destined to become
affected by TN. These odd sensations of pain, (such as a toothache) or
discomfort (like "pins and needles", parasthesia), may be symptoms of
pre-trigeminal neuralgia. Pre-TN is most effectively treated with medical therapy used for typical
TN
. When the first attack of true TN occurs, it is very distinct from pre-TN
symptoms."

Can any of you relate to this description?

My doctors are currently investigating the cause of my facial parasthesia (a skin sensation, such as burning, prickling, itching, or tingling, with no apparent physical cause). They are exploring the possibility of Multiple Sclerosis, but I have no other symptoms associated with that disease. My MRI and blood work show no sign of anything out of the ordinary. I have had facial parathesia for over a year first between my eyes, then all throughout my nose, cheeks and upper lip (bi-laterally). The feeling is with me most of the day every day. The neurologist I'm seeing said that it may be just an irritation of the trigeminal nerve similar to a headache, but he can't pinpoint the cause.

I certainly hope that I never develope TN and my heart goes out to all of you who have it. You all must be the most courageous people on earth.

Hi Jess

I'll be interested to hear what other people say about this. I didn't have that but I did have crazy burning itching on the left side of my scalp from the front to the top of my head. I still have this 5 years later but it flares with the pain.

I went through years trying to find out what it was, finally put it down to stress. Once I started getting the pain I saw the connection.

I really hope you don't have pre TN, good luck!

I hope TN is NOT what you have ..or are leading up to..but...

Yeah, i did have odd tingling/tightness sensations on that side for years. I always just wrote it off as a cold chill or just a muscle spasm from stress or something. Nowadays, i still get these sensations...usually before a TN attack. Meds have helped tremendously though...

I'm really hoping it's not what you are having; wishing some other condition on you! (isn't that sad? lol)

~Mistee

Yes, I had quick little stabs of pain localized to one "tooth" (or so I thought) for MONTHS. I had been to the dentist and he didn't see anything wrong. It got worse several months later so I went back. He still didn't see anything except a TINY little crack in a tooth. He prepped me for a crown and put a temp on it. By the next night, I was crying and on my knees in pain. He called me in pain meds and antibiotics and told me to come in Monday. Monday, he decided to send me for a root canal. The endo couldn't find anything wrong, but did a root canal anyway. The pains were still there and burning a lot afterwards. Went back to the endo and he said it sounded more neurologic to him now. A few days later I saw my nurse practitioner and she immediately diagnosed me with TN and put me on tegretol and sent me for an MRI.

I had a persistent (though intermittent) toothache in my back upper teeth for two years before I had my first attack. No sign of any tooth decay, but I had a molar removed anyway. I was desperate to stop the mounting pain. The pain got MUCH WORSE after the extraction.

For me the only thing I had before my GN was moments of pain that caused me to black out.
This happened three times before my diagnosis, and I have yet to have another.

Ive had tingling pain that travels across my scalp from my affected ear to the center of my head. I couldnt explain it except to say its like putting your tongue on a 9v battery. Of course when I say that, the Dr says "why would you put your tongue on a 9v battery"
That makes me laugh… I guess it is something not everyone did as a kid lol.

Before being diagnosed I couldnt explain the pain, except to say I have a pain deep deep in my ear. I cannot get to it no matter how hard I push into my ear area.

Smash

Jess, I'm glad to see that you've gotten some patient feedback. You may also run into some useful information by running the term "tingling" through our search box in the upper right. I've been talking with TN patients for 18 years (my wife is one of them). I'd have to say that precursor tingling or numbness or both are seen in quite a number of cases that later develop into full blown TN of either type (typical or atypical).

However, shindig's point is well taken that other neurological disorders can sometimes present with overlapping symptoms. Be advised that MRI is not always conclusive in finding vascular compressions. Sub-millimeter MRA (angiogram) in the FIESTA procedure is considered to be the gold standard for imaging of the cranial nerves near the brain stem.

The initial bilateral nature of your paresthesia is unusual but not unheard of. Your doctors should also investigate carefully to eliminate small benign tumor or sinus infection as potential causes.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

Mine started years ago with the sensation of a toothache that wouldn't let up. I think this is pretty common as many of us spend years going to the dentist with no relief.

I just wanted to say thank you to all who replied to my initial question three months ago. Thankfully, my tingling has not developed into intense pain sensations that would indicate TN. I never knew what TN was until my face started tingling which lead me to internet research and it's been eye opening. Best wishes to all of you and thanks again for your input!! P.S. for anyone who is interested, as of now my diagnosis is "headache syndrom." There's no known cause, but it's supposedly harmless so I'm just medicating with a very low dose of amitriptyline which does help.

I started as an odd numb feeling , that eventually changed to pain. I want the NUMB back!!!

I had tingling in a front tooth initially and over about 6 months it spread to a few other teeth on the right side of my mouth and included the lip and the side of the nose. I nearly drove my dentist insane because I kep insisting it was a tooth issue and he couldn’t find anything wrong.

Eventually the tingling increased to pain and involved the roof of my mouth. After about nine months from the first symptoms the pain became excruciating and the electric shocks started.

I hope the neuro can help you and ill keep my fingers crossed you dont have TN?

Hugs
Trish

I honestly can't remember anything before my first episode which was July 2009. All i could remember is that i woke up with excrutiating pain on my right eye. and as i got up to take a shower, I screamed too loud that my husband thought i had an accident. It was because I can't touch my right face w/o a shooting pain that hurts so much , a pain i never felt before. This pain was continous for a week and a half, in the range of every 15 minutes interval (worst than my first labor pain i have experienced). My Family doctor diagnosed it as TN right away due to the answers i gave him, not only that he happens to have an Aunt who went thru this. All symptoms are there

Same thing happen this Feb 22,2013, Woke up, this time brushed my teeth and felt that shooting pain started from the upper gum to my nose and stopped on my eyes for few seconds felling like being stab before pain starts subsiding down. My episode is still going on, but only hurts when I eat,brush my teeth, wash my face and when i talk fast especially when i have to explain something to my clients.

Praying for you that it will not turn into TN.

I've always had sinusitis, so sinus pain was pretty much the only pain I had in my face. Then one day last year the odd tingling started and what seemed to be like a sharp pain in one of my teeth on the upper right jaw each time I tried to eat. Since I also had a bad sinus episode at the time I didn't think much of it. I went to see a doctor who attributed the tingling and pain to sinusitis gave me Xyzall, nasal spray and regular pain killers and sent me home. This was about July 2012. The pain and tingling went away, but came back mid October 2012 worse than ever. It was baaddd. I had to do a bunch of tests - bloodwork, CT scan, but everything was normal... was referred from doctor to doctor until they confirmed I had TN in November. And here I am 6 months later. I really really hope you don't have TN. Best of luck and hope you get better soon.

I get tingling and burning when I'm due an attack, and sometimes I can feel the vein pulsing in my temple when an attack is coming - but these symptoms have occurred alongside suffering TN