New to group/site and newly diagnosed with TN!

General General TN & GPN (Old Site)
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Hi everyone! My name is Jenna! I’m new to the group and was newly diagnosed with TN (October)… Looking for support, questions and friends…

My story is below…

Current Pain Symptoms:
Typically 15-20 minute sporadic “attacks”, starts as ‘creepy-crawly’ around my lower left jaw area to my lower left teeth to my upper left teeth… Starts to increase in dull, boring heavy pressure like pain in upper and lower left teeth from molar all the way to front teeth. sometimes tingles during the end of the attack, Pain severe usually between pain scale 7-9. Not constant, it can go all the way to jaw, can’t open mouth or bite when “attack” happens,

Known Triggers:
Eating hot food, drinking hot liquids, Cold Wind hitting Face, (sometimes) biting hard … (attacks happen every night- usually around 9pm -12am without triggers)

History:
2005 i had a bunch of dental work in my upper left tooth near my molar.
2006 while enlisted in the military, they re-did my root canal. I’m not sure if this is the cause of any nerve damage or compression on to the nerve but abt 1 year later around 2007 I felt alot of pain and thought it was the toothache
Early 2007, I went to a dentist thinking it was my tooth and he took x-rays and did some exams and couldn’t find anything wrong but he prescribed my Vicodin ES which seemed to work. No symptoms or episodes for about 6-8 months. The pain felt like pressure like pain that lasted about 10-15mintues and would fade to pain that felt like alot of tingling sensations and a dull ache. I felt this same pain throughout the end of the year in sporadic attacks.
2008 Pain came and go…sometimes 3 times a week, sometimes every 3 months. It comes and goes. Sometimes 3 times a day.

June 2009 I was in severe pain for 3 weeks and finally went to a dentist and they thought i had to redo my root canal, after many xrays, evaluation and medications, and after seeing an endodontist as well…they confirmed that it was NOT my tooth and it was not TMJ either. The pain i felt also had alot of pain in my left jaw and cheekbone. They referred me to a medical doctor to be evaluated for TN.

October 2009 My regular doctor diagnosed me with TN and started me on Tegretol at 200mg/day. didn’t seem to work, slowly increased to 400mg/day. Couldn’t handle the side effects. Too much… I was then referred to a neurologist

December 2009… Finally saw a neurologist who formally diagnosed me with TN. He changed my meds to Topomax 25mg/day and Ultram for pain…eventually wasn’t working, increased to Topomax at 50mg/day and Vicodin for pain

January 2010 Saw neurologist again… apparently Topomax is giving me horrible side effects (headaches, horrible nightmares, sleep disturbances) he changed my medications to Neurontin 300mg/day and Vicodin for pain…

My question is… does anyone here, have similar symptoms as I do? Because I’ve been reading around, seems like TN patients have “electric shocks”, ATN patients have constant dull aches… i have neither. I have short sporadic dull aches. It’s kind of in between. But all my pain is in my teeth (as i feel)… I want to be sure about my symptoms and that i’ve completely ruled out that it’s not a dental problem…

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Hi Jenna,

I started with the typical electric shock like pains for a period of almost 4 years. I was under control with a minimum amount of tegretol then switched to neurontin (also a minimal amount) and did well for the almost 4 years. During that time I would occasionally have an increase in pain but it was controlled fairly quickly with an increase in meds and then I backed down. Then one day I started with increasing pain that was not controlled and approx 6 mths later I had MVD. But about 2 mths after the severe pain continued with no breaks I started having the dull aching in between the electric shocks. I didn’t start having the aching until the week after I had my first injection. But the injections didn’t help and I continued with the aching. After the MVD most of my pain is the aching but some minor shocks. But I do have the twitching and tingling but not with pain usually. I was fortunate not to initially have the teeth pain (but did when the severe pain started) so therefore, I did not seek dental advice or have unneeded dental work. My worst pain was also at night. But cold weather and wind affect me and this week is one of those unusual weeks in Alabama. We are down to single digits.

As Ro said, you will find people with all types and some with both.

I hope you will be able to find something that will relieve your pain.

Liz K.

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I have very similar symptoms...no electical shocking pain either. Mine was also brought oninitially by a root canal.

Dentists could not find problem. I have since had 6 teeth taken out and sinus surgery. I am just starting on the path to find relief...other than more unnecessary dental work.

I have been reluctant to take neurontin which was recommneded by the neurologist. My doctor had alocal pharmacy make a cream with neurontin in it. I just started it today. I also am going to try cranial work and acupuncture.

Spring allergies are causing the pressure in my face to aggravate the" dull" often trobbing pain to escalate.

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YES MA'M I HURT JUST LIKE THAT SWEETIE YOUR NOT ALONE

I BEEN LIKE THIS 5 YRS IS AWFUL!! BUT, AM TAKING EPTOL200MG

TWICE DAILY YOU CANT BRUSH YOUR TEETH CANT BLOW YOUR NOSE

CANT EAT NO MAKEUP CANT TOUCH YOUR FACE CANT EVEN KISS YOUR

HUBBY ALL WE HAVE TO DO IS PRAY!! SOMETIME MY LEFT EYE WATER

THEN SOMETIME I GET MY LEFT ARM GET A REAL BAD SHAPE PAIN HIT

BUT, AM DOING OK TIL IT SNEAK UP AGAIN GOD BLESS!!!