Hello All
Recent diagnosis of TN - however neurologist can not figure out the cause.
Brain MRI, Blood test - all ok. Dentist, Endo, Oral Surgeon and ENT - all clear my teeth after root canal, crown and almost pulled molar. On Gabapentin so I can thankfully sleep.
My question is should I get all or any of the following tests in an effort to determine cause? Jaw/Cervical MRI, Lumbar Puncture (have many old/new brain lesions-no other symptoms than TN), Nerve Conduction.
Or just suck-it up and be happy the epilepsy drug works?
Thanks G
As far as I know, the jury is out on what causes TN…
Most cases of trigeminal neuralgia are believed to be caused by blood vessels pressing on the root of the trigeminal nerve. This is said to make the nerve transmit pain signals which are experienced as the stabbing pains of trigeminal neuralgia. However, experts are not completely sure of the cause. Pressure on the trigeminal nerve may also be caused by a tumor or multiple sclerosis.
Some people have said their TN started after a dental procedure, car accident causing trauma to head or neck and other things.
A diagnostic indicator is when someone responds well to Tegretol or other anti convulsants .
So, unless you have other symptoms I don’t think you need to do any more tests. I am NOT a doctor.
Glad the med is working for you.
Mimi : )
It is a disease that is never permanently reversable, no matter what the cause -- as long as you are responding well to meds now....that is great!!!
--- However - please pick up the book "Striking Back" by Dr. Ken Casey - It will show you all your options down the road if/when the meds are not helping.
Thanks for the warm welcome TN people!
Just got going on the Gabapentin last month and not sure of the classification. But O what relief it is ..... from a person who is not good at medication.
Have read about the many causes of TN and will be a patient - patient. Mostly want to get a treatment plan to handle the pain but also so I can get dental work done. Just learning how much pain plays into the diagnosis side of dental work and that I do not respond to the novicain - many doses needed even an osteo-port where the DDS drills into my jaw to inject the novicain.
Anyway thanks and still reading about TN G
Please make sure you see film evidence of any dental work needed --- hundreds on here have had most teeth pulled for no reason -- because that seems where the pain comes from.
Glad the gabapentin is working -- it is an anti-seizure med / it is the first class of meds we go to
Also in the book I mentioned are personal stories, alternative treatments, ..... the more you know - the faster you can feel better for longer periods of time....
Keep Posting!
Most of the time, they will do an MRI to make sure you don't have MS or a tumor, but that is about it. TN is usually diagnosed by patient history and symptoms plus if the anti-convulsants work, that's a sign that it's TN.
Thanks Donna,
Yes - the MS word keeps coming up - I meet 50% of the diagnosis criteria, so as you explain that seems why the more focused tests. G
Hi George, I am recently diagnosed too I havent had any of your tests just a gp who recognised my symptoms, for which I am grateful because I was losing my mind I am on a gradually increasing dose of Tegretol, and am getting some relief from the symptoms. Anything that can get that pain under control is fantastic good luck Karen xx
I am kind of in the same boat, newly diagnosed but MRI and MRA came back normal, no tumor, no pressure from an artery. Except I tried several anti seizure meds, can’t take the side effects and allergic to carbamezapine-which actually did give some relief. Neurotin helps a little. Trying some natural approaches. My fear is if they can’t find the cause…how can they treat it?
Yeah Kathy I understand that thought process - one step at at time though Maybe the EVP conduction-brain activity studies could eliminate the brain and then focus on the neck. I am trying different pillows, seat heights at my desk, driver seat etc just to see if I have a simple mechanical problem as I wait further tests. Be strong! G
You’re right George, one step at a time. Good ideas, I do get chiropractic adjustment focused on my cervical subluxations. Sounds like you are doing a lot of positive things to support proper spinal alignment, too. Good luck!
Valley Girl- glad Tegretol is working for you!
I am a new member of the site, but was diagnosed a few years ago. Have been living in a bubble of naitivity I guess. My story mimics many of the others on this site. After my pain tripped the threshold of the meds, I had the Cyberknife treatment done and can honestly say that for about 2 months I was almost pain-free. Recently my right side of my face went numb. From the sounds of it I think I am lucky, and I do prefer this over the pain. Just want to be "normal" again. Does this nightmare ever end?
There is only one way to find the actual compressions at a very high rate -- that is MVD procedure - then while in there (behind your ear) they put teflon between the vessel and the nerve - and if you have a great TN surgeon and the stars align - your pain is gone or reduced.
Kathy said:
I am kind of in the same boat, newly diagnosed but MRI and MRA came back normal, no tumor, no pressure from an artery. Except I tried several anti seizure meds, can't take the side effects and allergic to carbamezapine-which actually did give some relief. Neurotin helps a little. Trying some natural approaches. My fear is if they can't find the cause..how can they treat it?
Hail All Yea TNers,
Recent head EMG test - full results pending. However part of the exam is to see if the left side of head nerves responds to electrical stimulation the same as right., base line data I suppose. My TN pain/numbness is right side only. I had little response on the left side, so much so the techs kept trying to get a match thinking maybe poor technique - finally they gave up after a few moments of whispering. Which was good as the pain just was escalating. My Neurologist is trying to determine the mechanism for my TN. Any ideas? I am an impatient patient - 2 weeks until follow-up and fear my TN is a symptom of ALS or MS.
Very grateful for all the info and support this forum exudes!
Thanks G
Words I never thought I would key, but here's hoping your TN is "just" TN and a not symptom of ALS or MS. Although I never heard of TN being a symptom of ALS. But then, four years ago, I had never heard of TN.
My opinion is if you have meds that are working, then for now just let things be and be fortunate. When they stop working then dwelve deeper into the root cause. For me it seems every time a new symptom comes along it means new meds and more tests anyway. Good luck!
Hi There!
I was diagnosed just 10 days ago. At the same time it was found that my blood pressure was extremely high, so along with Prednisone and Lyrica, I have been put on an anti-hypertensive, Adalat, which has been effective. From all of my internet research, which is excessive but I try to use reputable sites, there is alot of information that says TN can be caused from a blood vessel pressing on the 5th cranial nerve. By my estimation, and I am only guessing, it would make alot of sense that a vessel that is bulging from the effects of high BP could aggravate the nerve. Maybe this is something to consider. I am interested to find out if anyone else has had corresponding high BP with TN...? And when the MRI was done, were they specifically looking for MS or a tumour, or did they look to see if the vessel was pressing on the nerve?
Hi George
I am glad you found the support group - lots of experience and good advice shared here.
I have the same story pretty much as you.
All the work ups, tests to eliminate other concerns...the trials of different epilepsy drugs ( some I was allergic to/hives/ others I could not function on, on Topomax now and it seems to be a good match for myself).
Because of no known causes of my pains, I was diagnosed as A typical, with classic TN pains as a bonus. Oh joy - since 2002 I have had my pains come and go.
Be educated, learn, read, and ask questions. It is such a stubborn disease with no mercy that it has on us.
When times are bad acupuncture gives me some relief, cranial sacral massage, bio-feed back for pain control has been beneficial in dealing with the pain...and most of all your environment. You will learn what triggers yours and irritates it. Of course sometimes it can be absolutely nothing..but you will notice patterns.
I can't really answer your question. Do what you feel you need to
But with TN if a MRI does not show a pressing blood vessel on a nerve like a case solved situation....
it can be many things and difficult to pin point.
Happy the meds are working for you - that was one I wasn't able to tolerate.
Even those of us who have had it for many years - as myself, don't understand it clearly if it is A typical.
The best to you!
See you around and hope you have continued relief from your pain.
beachwalkmm
Hi Maureen,
Yes, numb jaw syndrome can be an early indication of other health problems. I too had not heard of TN or had any chronic numbness or jarring pain until just 6 months ago. The best part is, now I can store food in mouth, along my gum line, like a hamster and not even feel it! G
Maureen said:
Words I never thought I would key, but here's hoping your TN is "just" TN and a not symptom of ALS or MS. Although I never heard of TN being a symptom of ALS. But then, four years ago, I had never heard of TN.
Hi Beachwalkmm,
The 1st MRI was just a brain scan looking for lesions,tumor and cancer - nothing obvious. The most recent targeted my jaw, pons, and brain stem (1mm slices vs 5-6mm), stilling waiting on the report. Thanks for the advise! G