I’d like to know if any other type 2ers have only the pain of teeth pain and or burning? I don’t get the typical pains . mine is constant tho. I get some relief from medication tho. I go for a MRA tonmorow. It actually shows all your blood vessels unlike an MRI .suffered for 7 months without a diagnosis. I feel I am now working with the right Dr. Anybody have any feedback on gamma knife?? Thanx
Sorry for all the typos! Dang phone!!
Yes I do! The pain is constant in my right upper teeth.I believe it’s called odontalgia…look it up! And I get the burning …medications give me ghastly side effects so now waiting to see neurologist.Hang in there!
I’ve seen 3 dentist and endodontist an oral surgeon and a periodontist…its not teeth related they all say my teeth are 100% healthy on x ray. I kept going to people in the dental field for months BC I was convinced it was my teeth… But a few weeks ago finally diagnosed with tn type 2,
It first started with severe acid like burning inside of my mouth. Had one Dr tell me I had a condition called burning mouth syndrom. New Dr says that’s bs she said nerve damage causes burning.
No it’s definitely not teeth related even though feels like raging toothache magnified by 100x! Medication will be your first call…are you on any med? It’s an awful thing to suffer from but you are not alone here…try an ice pak on your area of pain.Try not to get too down(huh!)surround yourself with positive people and research.You are your best advocate!
Yes I’ve been on several meds and so far lyrica and kolonopin help the most. Still pain but it reduces it. What meds have been most effective for you?
RE Gamma Knife: it appears that the numbers of these procedures have been dropping off in recent years compared to MVD. One of the reasons for this is that pain recurs in about 50% of GK successful procedures, within three years. This statistic was quoted in the practice standards of the International Radio Surgery Association (2009).
Regards,
Hi the Type 2 toothache can go for months - can't' close your mouth even, let alone eat anything thats not liquid or soft. I get it in cycles and use Amitryptaline with Gabapentin to settle it back down again - this can take a while. With the Type 2 blood vessels aren't necessarily present or obvious so MVD's or surgical solutions may not be appropriate. As my neuro put it - type 1 is definately the hardware; type 2 can be software or both. So if nothing is obvious on the MRI don't despair. Hope this helps. :)
I get tooth pain a lot, and it is almost always worse at night. I have even gone to the dentist insisting that I needed a root canal only to learn that I had already had one. I have one particular tooth that gives me a fit! For the most part, my tooth pain has been on my lower right side but lately I have noticed that it is also starting to appear on my other side, both top and bottom, which scares me. I use a lidocaine rinse (prescription needed) or even anbesol.
Unfortunately, I get all the other pain associated with TN2 but the tooth pain is a part of it for me as well.
Cathy In MD
i understand the tooth pain all too well. my oral pains are the following; teeth or tooth feel like they are being squeezed in a very rusty, dirty clamp, feels like someone is make slices along the right side of my tongue, the is a very low current of electricity running thru my gums.
my right side is the one affected by tn but the past few weeks my left side has had some of the same sensations. a new one for that side is that several of my upper teeth feel like they are too big for my mouth and cause pain when cheek moves over them while talking.
if i said these things on any other sight i suspect i would be wearing a lovely white, straight jacket in short order.
Jennifer Muir said:
Yes I've been on several meds and so far lyrica and kolonopin help the most. Still pain but it reduces it. What meds have been most effective for you?
If I could tolerate the side effects of the medications I have been on I’m positive I would not be in pain today,unfortunately I can’t! The only medication I am on now is clonazepam( klonipin)and that is only at .50mg.I take it at night and I’m not woken up by pain.It does leave me slightly hung over but I need to sleep so let it be.
I had the exact pain. Felt like my gums,teeth and inside of my cheek were on fire. Some days were better than others. I had 2 glycerol injections with no relief, and opted for a microvascular decompression (mvd), last year. I too had the special mri that showed arteries, ect…but mine came back normal.
So my Neuro surgeon encouraged the MVD to look around.
He found a cluster, malformation of veins wrapped around my trigeminal nerve.
Veins do not show on scan.
I hope you have a successful journey with whatever treatment you choose! Prayers!!
Wow ImaClark that is so interesting.Our pain is so untypical of your classic TN that you feel an MVD would be useless and here you are all better after having one…I am so very happy for you!
As I write this their is a pair of pliers clamped onto my top front tooth trying to snap it in two while I would swear that I've cut the side of my tongue although I know I haven't. Soooo not pleasant.
Yes, my symptoms are similar. Recommend that you ask your new doctor, who you like, to try nerve blocks prior to surgery because I learned the hard way after numerous surgeries that the many MRI's that I had prior to every surgery only ruled out tumors and possibly blood vessel compression of my trigeminal nerve. In desperation I searched the internet for "neurologist and trigeminal nerve block" and an outpatient nerve block worked. DId this search many times in the past with no luck but a recent research found two. The first neurologist just put me through more meds trials then recommended a pain pump implant surgery by one of the doctors in their office. Fortunately, I tried the second group who performed the percutaneous trigeminal nerve block in their office and I went home that same afternoon. IT WORKED, The point is that doctors see few TN patients so have limited experience and will, like any professional, rely on their training and experience.
Good luck!
RonaldS
Ronald I am so happy for you…you have your life back now.How long ago did you have the nerve block procedure? What is it called? Where are you based? Did you have ATN or TN? Thanks!
Not saying this is you Jennifer, but a fair number of people associate the face with the trigeminal distribution only, when C2 (from the neck) can and does include teeth pain, predominately in the lower teeth, due to nerve refered pain. Just a thought, all the best.
Yes I got an MRA of NY neck as well waiting on results. Thank you everyone