Symptom Questions

1

Hi everyone,

I am new to this group and hope those with experience won't answering some questions I have.

I have pain in my mouth that started after dental surgery 2 years ago. I have had TMJ ruled out by multiple dentists. I have recently been tentatively diagnosed with V2 neuralgia as a result of the surgery and am confused because none of the information I find about TN fits me very well.

I have pain in the roof of my mouth near my wisdom teeth gums, varying in intensity. If I press with my finger there, it is ALWAYS very sore there, like a bad bruise. Does neuralgia pain act like that, feel sore all the time and then more sore when pressed?

All the descriptions I see mention attacks and sharp, brief, electric-like shock type pain. That isn't how mine acts at all. If I talk for awhile, turn my head or flex my neck, or lay on my side, the pain in my palate gets worse and can spread to nearby areas and when that happens, some of the pain, especially in my tongue feels sort of prickly/tingly, which is what I think of as nerve pain. It doesn't happen from a breeze, touch to my face, brushing teeth, chewing, putting on makeup, washing face, or any of the usual triggers I see. My pain is not brief bursts but more like having a sore knee and the more you use it, the worse it feels.

Does this fit with atypical trigeminal neuralgia?

Elsie

2

Hi Elsie,

Have you looked up gloosophayngeal neuralgia? I am not a doctor, but read about it trying to understand my own odd symptoms. Some of your symptoms might fit. Here is an explanation: http://www.nlm.nih.gov/medlineplus/ency/article/001636.htm.

I have trigeminal neuralgia plus geniculate neuralgia evidently caused by an artery pressing on my seventh and eighth cranial nerves.

Aside from the typical trigeminal neuralgia symptoms, I have also had stabbing pain and aching pain in my palate, toothaches, and jaw aches.

Sorry you are in pain, and know here you will find many sympathetic friends and real help!

Blessings,

Sara

3



Eidelweiss said:

Hi Elsie,

Have you looked up glossopharyngeal neuralgia? I am not a doctor, but read about it trying to understand my own odd symptoms. Some of your symptoms might fit. Here is an explanation: http://www.nlm.nih.gov/medlineplus/ency/article/001636.htm.

I have trigeminal neuralgia plus geniculate neuralgia evidently caused by an artery pressing on my seventh and eighth cranial nerves.

Aside from the typical trigeminal neuralgia symptoms, I have also had stabbing pain and aching pain in my palate, toothaches, and jaw aches.

Sorry you are in pain, and know here you will find many sympathetic friends and real help!

Blessings,

Sara

4

burning mouth syndrome is another possibility. all these are variations of orofacial neuropathies, atypical TN (or TN 2) being a common variant experienced by many in the group on this site (Type 2 TN). I learned a lot by reading the book Striking Back, which I understand is kind of the ‘bible’ for sufferers of TN & related or similar nerve pain. I am not a physician, but based on description, it certainly sounds like nerve injury.

5

Thank you to everyone that replied. I really appreciate it.

6

Hi Elsie

Have a look at the following from wiki doc, your mouth and gum symptoms match very well with V2 and I don’t think you need to go hunting for another explanation.
I have similar sensations ( and a host of others) and don’t get the facial shocks, and mine did not start with dental procedure, it came clear out of the blue, but in the beginning got the lancinating volleys deep within my head. I am having MVD in Sept.

The ophthalmic, maxillary and mandibular branches leave the skull through three separate foramina: the superior orbital fissure, the foramen rotundum and the foramen ovale. The mnemonic standing room only can be used to remember that V1 passes through the superior orbital fissure, V2 through the foramen rotundum, and V3 through the foramen ovale. [4]
The ophthalmic nerve carries sensory information from the scalp and forehead, the upper eyelid, the conjunctiva and cornea of the eye, the nose (including the tip of the nose), the nasal mucosa, the frontal sinuses and parts of the meninges (the dura and blood vessels).

The maxillary nerve carries sensory information from the lower eyelid and cheek, the nares and upper lip, the upper teeth and gums, the nasal mucosa, the palate and roof of the pharynx, the maxillary, ethmoid and sphenoid sinuses, and parts of the meninges.

The mandibular nerve carries sensory information from the lower lip, the lower teeth and gums, the floor of the mouth, the anterior ⅔ of the tongue, the chin and jaw (except the angle of the jaw, which is supplied by C2-C3), parts of the external ear, and parts of the meninges.
The mandibular nerve carries touch/position and pain/temperature sensation from the mouth. It does not carry taste sensation, but one of its branches, the lingual nerve carries multiple types of nerve fibers that do not originate in the mandibular nerve. Taste fibers from the anterior 2/3 of the tongue are initially carried in the lingual nerve (which is anatomically a branch of V3) but then enter the chorda tympani, a branch of cranial nerve VII.

Hope this helps a little.
Bellalarke

7

Thank you Bellalarke. It helps to know that my symptoms are actually TN even though they don't act like classic TN.

I hope your MVD is successful and wish you the very best.

Elsie



Bellalarke said:

Hi Elsie

Have a look at the following from wiki doc, your mouth and gum symptoms match very well with V2 and I don't think you need to go hunting for another explanation.
I have similar sensations ( and a host of others) and don't get the facial shocks, and mine did not start with dental procedure, it came clear out of the blue, but in the beginning got the lancinating volleys deep within my head. I am having MVD in Sept.

The ophthalmic, maxillary and mandibular branches leave the skull through three separate foramina: the superior orbital fissure, the foramen rotundum and the foramen ovale. The mnemonic standing room only can be used to remember that V1 passes through the superior orbital fissure, V2 through the foramen rotundum, and V3 through the foramen ovale. [4]
The ophthalmic nerve carries sensory information from the scalp and forehead, the upper eyelid, the conjunctiva and cornea of the eye, the nose (including the tip of the nose), the nasal mucosa, the frontal sinuses and parts of the meninges (the dura and blood vessels).

The maxillary nerve carries sensory information from the lower eyelid and cheek, the nares and upper lip, the upper teeth and gums, the nasal mucosa, the palate and roof of the pharynx, the maxillary, ethmoid and sphenoid sinuses, and parts of the meninges.

The mandibular nerve carries sensory information from the lower lip, the lower teeth and gums, the floor of the mouth, the anterior ⅔ of the tongue, the chin and jaw (except the angle of the jaw, which is supplied by C2-C3), parts of the external ear, and parts of the meninges.
The mandibular nerve carries touch/position and pain/temperature sensation from the mouth. It does not carry taste sensation, but one of its branches, the lingual nerve carries multiple types of nerve fibers that do not originate in the mandibular nerve. Taste fibers from the anterior 2/3 of the tongue are initially carried in the lingual nerve (which is anatomically a branch of V3) but then enter the chorda tympani, a branch of cranial nerve VII.

Hope this helps a little.
Bellalarke
8

Elsie, happy to be of help. Talking is one of my worst triggers too, and lying my head down.

I have had some success with gabapentin but it took a really high amount: 900 x 4/ day. For a long time I had a lot of the usual working memory/sluggish brain issues, but after awhile, my brain did more or less adapt, although I am still fairly slow moving.

If your pain is not unbearable, you might want to look at Mindfulness Based Stress Reduction therapies to help live with your TN. This kind of cognitive approach has been helpful for me and I will need it for the rest of my life to stay as active and engaged with the world as I can. Even in conjunction with the meds, it’s an approach that is highly beneficial.

Also, it’s good to be as informed as possible, but not too caught up in the painful narratives. Everybody is different. The trigeminal nerve is made of over a hundred strands and has so many ways it can branch, so the varieties of symptoms seem to be endless from day to day!

Thanks for you good wishes.
Keep Heart
Bellalarke

9

Hi Elsie, I am so glad to see everyone quick to respond with info. kindness, and sharing. I think
that LWTN is an awesome place. I have learned so much in just a short time. Sharing stories, of good and bad, can help in so many ways. I know that Bellalarke was trying to help and get info. to you which helped so much with the new symptoms I have been having with my mouth.I have had tn2 for about 22 yrs and still I learn something new almost daily, just like this morning. Thank - you both,since around the end of March my lips have been burning, like someone holding a lighter to close! It happens almost daily it can last minutes or hours. I have other things going on in my mouth, but they have been their for yrs. My tn is all on the right side. My nose only burns on the rightside my right eye will water when the burning, boring, aching, gets really bad, which is more often then not.My teeth ache as if I have a bad infection.That really blows me a way because I have pocket teeth ( lol) the roof of my mouth will feel like ouchy prickers pushing up against it.I also have tmj my bottom jaw aches and feels like someone has hit me hard, once again, all on the rightside I have way more going on, but that is for another time. Sometimes I get over whelmed with all the info. and have to take a break. I am glad for this info. and will read it again now. Thanks again, Dawn

10

Here’s the link to the whole article. It’s dense, but worth pouring over.

http://wikidoc.org/index.php/Trigeminal_nerve

Keep Heart
Bellalarke

11

Elsie - I can relate to your frustration on symptoms. Mine started with a dental procedure too, about 18 months ago. I have the same soreness you describe, except it’s on the lower jawbone on the inside of my mouth just below my teeth. I had a back tooth pulled out and he placed an implant down into the socket. I think he most likely drilled down too far and compromised the IAN nerve that runs just under the teeth. It hurts mostly all the time, but sometimes the degree isn’t too bad. It just feels like a sure spot or maybe a canker sore. Then other times it really flares up and feels like it’s swelling and gets really painful. This will last sometimes for a few minutes and sometimes for several hours. Then it’ll go back to just being a sore spot again. Whenever I describe it to a doctor they look at me like I’m crazy. Really, really frustrating. Worst of all, nothing shows up on x-rays or MRI.
Good news - Were not alone, I think a lot of people are wrestling with similar conditions and if we keep communicating we’ll find a solution eventually. Stay positive and keep your spirits high. Take care, Jeff

12

My TN acts like a toothache too. I had a root canal done. The pain was there first so I don't think the root canal caused the pain but may have been unnecessary. Mine is on the left side. Always starts in the bottom molar, second one in, then radiates across the top into the jaw, cheek and sometimes my ear. Everyday the pain is different. But it is constant, tight, pulling pain.

Once I came across Type II TN I was relieved in a sense, because my pain finally fit into other peoples' experience.

This is an amazing website with so much information and so many caring people willing to share their experiences and treatments!

13

Yes! Type II pain doesn't fit the better known version of Type I. It was a blessing for me to find this site, too, to hear others stories and share some of mine. Not many physicians know about TN, or are misinformed. Please, do not let anyone, especially in the health profession tell you that the pain is "phantom pain" or otherwise "in your head."

Come January, it will be thirteen years since an oral surgeon's needle damaged a nerve in my jaw. I now have a "toothache in my jaw" every second of every waking day. Some things, like talking and chewing and the damp/cold make it worse, but it is always there. It took me three long years to finally get a diagnosis from a specialist in Pittsburgh of "a-typical nerve damage." Only my personal research discovered TN. Hang in there! Educate yourself and your doctors who are willing to listen. Check the resources on this site, too. Good luck!