[Rae of Hope]

Hello!

I'm new to the forum and wanted to introduce myself. I have been diagnosed with TN for about 9 months now. I'm 45 years old. In one of the Texas TNA newsletters, they surveyed 1300 members to see how long it took them to get diagnosed. As most of you know, it can take awhile. I was in the top 5% of those surveyed and was diagnosed immediately by a new dentist that just took over from my old dentist. It's rare to get diagnosed so quickly. I had two cavities filled and it was the final insult to the nerve. I believe I started with preTN and by the time I saw my neurologist (who confirmed the diagnosis) about five days later I was having the electrical zaps and being stabbed in my face. Carbatrol knocked the sharp pain out within 2 days.

I also deal with a secondary type of pain that also comes in attack form. I am mostly pain free during the day but I have one or two attacks a day when the nerve is mad. The attacks can last for minutes up to 2 hours but generally are 30mins in length. It is lancinating pain in the right half of my tongue, top/bottom teeth, jaw, cheek, or ear all on the right side which can vary in intensity. Triggers have developed steadly over time - loud noise, chewing, talking, wind on my face and just recently brushing my teeth. These triggers trigger the pain I just mention above since Carbatrol when it works, knocks out the sharp pain. The pain has been steadily aggressive and jumping over my medication. When that happens then I get the lighting bolts and the most horrific pain in my teeth that will last for 4 seconds than off for 50 seconds - that lasted for hours once until I went to the ER. I understand what hell is upon this earth - classic TN pain! The longest remission that I have had is 7 weeks. The attacks come in clusters and then leave for a period of time.

My body is all of a sudden rejecting Carbatrol. I have been having intolerable side effects. Everytime I reduce this med they go away. I had medicine induced depression on Neurotin (great pain relief though!!). Lyrica doesn't work well and my Neurologist said it is time to see a Neurosurgeon.

I am scheduled to have MVD surgery with Dr. Jonathan White at UT Southwestern in Dallas early next month. It concerns me that some of the pain that I have deviates from the classic profile. I think if I wasn't diagnosed so quickly that I would see more of the classic symptoms. But, hey, I not willing to get off the meds to find out! Ha! Can anyone with Atypical TN weigh in on what I described and let me know if it sounds familiar? No neurologist nor neurosurgeon has diagnosed me with ATN but I covet your opinions.

I have a great God given peace about the surgery that is coming up. I will let you know of the outcome.

I look forward to getting to know you better. I know that just our sharing and communing together is a way to strike back against TN. Knowledge, friendship, peace, love, community,and hope are powerful antedotes against pain!

Be Blessed!!
Kimberly

[bulliemom]

Good luck with the MVD, Kimberly! I have ATN. Funny you should mention neurontin-induced depression. I was on a very high dose of it this year and I have NEVER experience such severe depression in my life. I felt 100% depleted and my DH and family were worried about my mental state. I just went off the neurontin to try Lyrica. I'm getting good results from it and best of all, I have felt the depression LIFT! I feel my energy coming back, and I can think and concentrate again!

I don't think the MVD is going to do much for your ATN. You may have to face being on meds again for that -- or read up on the Peripheral Neuro Stimulator that a couple of people here have gotten! My pain doctor is planning on doing his first one in a few months -- I told him to give the #2 slot to me! Keep us posted when you get your surgery date.
Mary

P.S I'm pretty new on here too. I've been diagnosed with ATN for almost 3 years now although I had episodes of it for almost 20 years. Always thought I had sinus trouble.

[bluemom]

Hi, Kimberly! I'm very sorry to be meeting under such circumstances--that being said, Welcome! Thank you for sharing your story. I am amazed at how different each person's story is. Like you, my TN was dx'd early, and by the first doctor I saw. I also see my TN developing as the weeks go by. I have developed my first trigger, stressful situations like arguing with my teen.

I am interested in your dental experience. I need to have a cavity filled in the worst possible area of my mouth. I am so afraid that it will kick my mild TN into high gear. I saw my neuro this week and he said my fear is valid. He kept saying, "Make sure your dentist takes extra precautions," but he didn't seem to know what those precautions might be! And, my dentist has heard of TN, but that's about it.

Any advice???

Bluemom

[Rae of Hope]

Originally Posted by bluemom

Hi, Kimberly! I'm very sorry to be meeting under such circumstances--that being said, Welcome! Thank you for sharing your story. I am amazed at how different each person's story is. Like you, my TN was dx'd early, and by the first doctor I saw. I also see my TN developing as the weeks go by. I have developed my first trigger, stressful situations like arguing with my teen.

I am interested in your dental experience. I need to have a cavity filled in the worst possible area of my mouth. I am so afraid that it will kick my mild TN into high gear. I saw my neuro this week and he said my fear is valid. He kept saying, "Make sure your dentist takes extra precautions," but he didn't seem to know what those precautions might be! And, my dentist has heard of TN, but that's about it.

Any advice???

Bluemom

Hi Bluemom,

It's so nice to meet you! Yes we have very similiar situations. Yes, stress can and almost always (especially an arguement) brings on a vicious attack. The mind/body connection is an amazing thing.

Regarding your dental needs coming up, have you gone into a remission of any kind yet? I read info on TNA that you should wait to do any dental work if you can until the nerve is calm. Looking back, the year before I was diagnosed I had two bouts of tooth pain for about 3 weeks each in two teeth. The teeth were fine. It was just the nerve starting to act out. The two teeth are both major culprits when I have pain in my teeth. Then on 11/19/09 I had two cavities filled. The dentist hit the nerve twice with the numbing syringe - it was horrible. That and the drilling brought on a horrible case of TN. It is so hard making these decisions. I also have work needed on the TN side but I also have bouts (days, weeks) of remission. Even if I was in remission, I would be prepared with Dilaudid (which helps me) and a couple tabs of Baclofen and be prayed up before I saw the dentists!!!!

I hope that helps!

My best to you!
Kimberly

[Mylastnerve]

Hi Rae,
Welcome to the forum! I hope you make yourself at home here. I have ATN, I would describe it as a lancinating, burning, constant pain that stays for hours. There are no bursts of pain, just a droning on of unremitant pain.
Bulliemom,
Welcome to you as well. I wanted to ask, is that your name because you have bullie-breed dogs? I have an American Bulldog who is as stubborn, talkative and cantankerous as they come. I am happy to hear that you are considering a stimulator.
And dear Bluemom,
There is a page on the TNA website with info regarding getting dental work – Here is the site address:
http://www.fpa-support.org/
and here is an excerpt:
TNA Tips for Keeping Dental work as painless as possible:

° Go to the dentist when you’re not hurting. Make sure your dentist knows you have TN so he or she will be flexible to schedule your appointments (maybe even on short notice) during periods when your pain goes into remission. This will also help the dental staff to understand in case you have to cancel in the event that your pain flares up right before an appointment.

° Be well medicated. If you don’t have remissions or must have dental work done during an active pain cycle, consult your doctor so you’re on an optimal dose of medicine. To prevent a breakthrough, your dentist may want to increase the dose of any TN medications you are taking for a day or so before and after the procedure. Also try to schedule your appointment during the time of day when you’re least likely to get pain or when your medication is at peak effectiveness (usually about one hour after taking a dose). Several hours before the procedure, take a pain-killing medication such as codeine. Take it again after the procedure. The goal is to have at least five hours after the procedure during which you’re pain free.

° Topical anesthetics. Most dental patients need numbing compounds mainly for tooth repairs, crown work, extractions and the like. However, even teeth-cleaning and exams may bring on pain for facial pain patients. Topical sprays or gels can be used to temporarily numb the gums.

° Touch the sensitive area last. If there’s a trigger zone that usually sets off the pain, ask the dentist or hygienist to examine and clean everything else first.

° Switch local anesthetics. If you need treatment, discuss with your dentist the type of anesthetic to be used. Ask your dentist to use Mepivacaine 3% or Carbocaine 3%, neither of which contains preservatives or a vasoconstrictor. You may want to ask in advance, because the average dentist doesn’t keep this particular drug in stock.

° Epinephrine is a vasoconstrictor; it’s sometimes added to local anesthetics to prolong their numbing effect. Epinephrine can trigger nerve pain, especially in cases of trauma-induced TN. In these cases, ask your dentist not to inject a vasoconstrictor with local anesthetics in the area of nerve damage.

° Consider the injection point. Ask the dentist if possible to inject the local anesthetic at a site as far as possible from known, active TN trigger points.

° A knockout. If all else fails and you absolutely need dental work, discuss the possibility of a general anesthetic (either IV or inhaled) to put you to sleep while the work is being done. This type of anesthesia can reduce emotional trauma.

So, Welcome everybody, it’s nice to have you, sorry that you have to be here )
Lily

[Rae of Hope]

Originally Posted by bulliemom

Good luck with the MVD, Kimberly! I have ATN. Funny you should mention neurontin-induced depression. I was on a very high dose of it this year and I have NEVER experience such severe depression in my life. I felt 100% depleted and my DH and family were worried about my mental state. I just went off the neurontin to try Lyrica. I'm getting good results from it and best of all, I have felt the depression LIFT! I feel my energy coming back, and I can think and concentrate again!

I don't think the MVD is going to do much for your ATN. You may have to face being on meds again for that -- or read up on the Peripheral Neuro Stimulator that a couple of people here have gotten! My pain doctor is planning on doing his first one in a few months -- I told him to give the #2 slot to me! Keep us posted when you get your surgery date.
Mary

P.S I'm pretty new on here too. I've been diagnosed with ATN for almost 3 years now although I had episodes of it for almost 20 years. Always thought I had sinus trouble.

Hi Bulliemom,

It's nice to meet you!! Yes, about the medicine induced depression (Neurontin) after 3 days of stopping the medicine the depression completely lifted never to return. Yikes!! I also tried the Lyrica and got good results initially and then over time its effectiveness waned for me. No depression for the Lyrica.

It is interesting, I was never diagnosed with Atypical Trigeminal Neuralgia and I have seen 2 neurologist and 2 neurosurgeons. Dr. White (neurosurgeon) also mentioned that once you are on anticonvulsants that it can also change the pain and the way it exhibits itself. In 1990 when he first got out of residency he would only operated on people showing absolute classic examples of TN. Then he got involved with TN Association. TNA showed him that even if a patient deviates from the classic profile in a few ways that they still have a 50/50 chance of being permanently cured. He found he could help so many more people. The neurosurgeon at St. David in Austin said that he has only had one person in his practice demonstrated all classic signs of TN. The others always have some variance on the theme but still many of the signs of classic TN. His practice also sees (same as national %) about 80% cured after 10 years.

It seems that TN doesn't always fit into a neat little box. Because people are different, it tends to present itself differently with different people.

Also, when I take the survey at Orgen Health and Science University, I always come up with TN1:

trigeminal neuralgia Type 1 (TN1): Trigeminal neuralgia, type 1, (TN1): facial pain of spontaneous onset with greater than 50% limited to the duration of an episode of pain (temporary pain).


trigeminal neuralgia Type 2 (TN2): Trigeminal neuralgia, type 2, (TN2): facial pain of spontaneous onset with greater than 50% as a constant pain.

It will be interesting to see what results I get from the MVD. I will be sure to keep you posted.

Please keep me posted as to the stimulator. My heart breaks that you have had to suffer for 20 years with this sickness. I am so happy though that relief is potentionally right around the corner!!

My best to you!
Kimberly

P.S. - How does your pain present itself if you don't mind me asking?

[Rae of Hope]

Thank you so much for the great information!! You did such an excellent job refering to the TNA info regarding Denistry for Bulliemom. It really is an important subject for us!!

Thanks for sharing the way your pain presents itself. I very much appreciate it. I think the pain I am contending against normally comes on in attack fashion. Something triggers it and all of a sudden it is a level 8 for 20-30 minutes in my jaw and teeth for example and then it releases me and I am free from pain for the rest of the day or I have a second attack if I do something to trigger it again. It doesn't burn either. I use the word lancinating to mean horrific pain. I think the only reason I am not put into the ATN category is because this pain lacks being consistant over more than 50% of my day. Regardless, I believe it does lessen my percentages for a permanent cure for the MVD.

Thank you once again for your warm welcome!

My best to you!
Kimberly

[Burntmarshmallow]

Hi Kimberly want to welcome you to the t.n forum at NeuroTalk it is a great place for support and info and understanding folks.I have been kinda busy with life and not around as often .
I wanted to share that when I was on neurotin it made me extremely depressed and suicidal . I am allergic to anti seizure meds too I found out riding the med merry-go round. I have a PNS now and am able to manage my pain so much better with the device then with anything else. I have A.D. in lower right trig nerve from it being snapped during auto accident. My PNS was last option after a pain pump implant in back of head was ruled out as the morph in i.v. didnt help for the pain during trail .
I always dread sharing my story because it seems to scare others but to me it has a happy ending with my PNS . we must all keep in mind each of us are different and so is T.N. and the different forms of t.n. the more we share the more hope we leave for others to find a way to manage and lower this pain. there is allot of different things that work for people, so dont give up .
I have to say I notice you said a permanent cure .. I am not sure I agree there is a permanent cure. I think there is remission . I think certain things like mvd or meds can allow one to go sometimes 5-6 years pretty much low pain or pain free but I dont think there is a cure that lasts forever or the rest of ones normal life span. that is just my personal opinion.
When are you having MVD. I must catch up here I certainly missed allot being away busy. I want to extend a welcome
to You
To Bluemom
and to Bulliemom
glad you all have found your way here cant wait to get to know all of you.

PEACE
BMW

[Burntmarshmallow]

kimberly,
I have been thinking of you and have you in my positive thoughts .
It is next month now (from when you posted scheduled MVD surgery)
I know a few of us have kept you in our prayers for you to get threw this surgery sucesfully and most for sure for the pain to be gone.

I am sorry that I may have sounded rude in my last post on the subject of a permanent cure . Please NEVER let my personal opinion be anything but hot air it was not meant to offend or anything of the sort. I wish to God for my t.n. family , t.n. friends , for you and for the many other t.n. people I have yet to meet...I wish and pray every day for each of us to find a cure and be rid of the pain monster for good and forever.
I Strongly am wishing, praying and have you in my thoughts for the best of the best with the MVD surgery to be successful and recovery is speedy. Please let us know how you are when you can.
.
PEACE
BMW...Tina

[Rae of Hope]

Hi Tina,

I wasn't offended by your comment on no permanent cure. I must admit that I had to think about it a bit. As long as the veins or arteries are not compressing the nerve, it would seem that there would be no TN. Although I know arteries can move back into a place where they are compressing a nerve even after being moved by a surgeon. Also, blood vessel can grow back and wrap around the nerve again. Or maybe none of the above! I am believing for a permanent cure! Huge smile!

Thanks so much for your prayers! They mean everything!

I am sorry it took so long to give a report. It has taken awhile to heal.

I hope you are doing well!!

Kimberly