was just wondering iof some of you could share the course of your disease with me-- did it start slowly?? How much time did/do you have between pain attacks? Do the attacks get worse? Are some days worse than others? Did you have pain-free days/weeks/months?? Do you get attacks at night?
Did/do the meds work for you??
I have heard it is better to get definitive treatment early in the course of the disease-- seems the meds allow the nerve to continue to get abused by the offending blood vessel... did anyone get surgery fairly soon after diagnosis??
SORRY-- but it is one thing researching articles but I would really like to hear from people!!
Bless you all for participating in this site!!!! ;-)
Mine started in Feb/Mar of 2012........just this stab that would happen, seemed like in one tooth. Went to the dentist and he found nothing. It eased up some and then started coming back more frequently in June of 2012. It got worse, so in August I went back to the dentist. He found nothing except maybe a TINY little crack in my tooth. He said he could crown it if I wanted so I said DO IT. He filed the tooth down after novacaine shots and put a temp crown on it. This was on a Thursday. By Friday night I was in the FLOOR with excruciating pain every time I opened my mouth. It was my whole left jaw by this time. Dentist called in Lortab and Amoxicillin and said he wanted to see me Monday. Lortabs did not TOUCH this! On Monday, he sent me to an endodontist who didn't see anything but said he could do root canal and see if it helped. Again, I told him DO IT. The pain still came and went and I went back to the endodontist that Thursday. By this time I had had more time to pay attention to how the pain felt. The endo said it sounded neurologic to him. He consulted with my dentist and they discussed a possible bite guard for me. I decided by that next Tuesday that I was going to see my NP at the doctor's office. She immediately diagnosed me and started me on Tegretol. It worked within 8 hrs! Mri was normal except for thickening in my sinuses on the left side. I had to keep increasing up to 1200mg a day within the next 3.5 months because of breakthrough pains but since I have been on 1200 a day I do pretty good. Every now and then I have a little shock or stab and sometimes I have some tingling, mostly when storms are coming. Hope this helps!
Wow thanks! Nice to hear it is working well for you. I am so scared from some of the stuff I read!! I, too, kept going back to the dentist because both top and bottom jaw were aching every few days- like an absess. He couldn't find anything so i tried to talk myself out of it and just deal with the episodes. Pain has continued off and on but over the weekend it got nasty and more frequent. I am pretty sure this is what is going on from what I have read. Have you dealt ok emotionally with it?? I am so freaked out!!
There are only about 12 in 100,000 of us … You do need accurate info!
Mine was not caused by oral surgery… But the anatomy was loaded to start 4 hours afterwards…
2000 +people here will give you different answers to your above questions about pain frequency, duration,length of remission… Disease is progressive…but not hopeless. I got diagnosed right away oct 2010…took the meds that took away the pain and my IQ and researched here and TNA website…oct 2011… One year later had MVD surgery by the top person on the planet… Now… 1.5 yrs later…have 2 to 5% pain. About twice weekly…
One theme is mannnny of us have no pain while sleeping… But we are so individual… There are exceptions to every TN logic … (TN LOGIC)… That is a pun! Been around since early humans… Lastly… It’s when I found that faster treatment can be faster good results… I flew out of state and scared to death…changed the course of my disease for now… Might need 1 more MVD in a year or a decade…whatever you do, concentrate on what the people here are doing to have less pain or no pain…what works and what is obtainable… TN one and ATN are similar … Sometimes different treatments… I compiled a list of meds that people got relief from…topical and oral if you would like.
Keep posting…and after initial shock… Be proactive and remember you are the boss when it comes to hiring medical professionals
Hi mine starter with pins n needles on my right side of face really bad spasms that nearly closed my eys.this ws Dec 2011 to round Mayish.my GP said it ws an infection in the nerve n gave me steroids,bt that did not help.the same sypmtoms came bk Dec 2012 n then all of a sudden I felt these shocks,I thought mayb my dentist touched my nerve n then the one day I had an attacked afta breakfast.it was excrutiating ,I ws on the floor screaming with electricity splitting my whole head apart.my son on top of me screaming ‘mama,mama’ niether of us knu wat ws happening.I cried so hard from the shock,I thought I ws dying.this brought on a migraine.I went to do as soon as it passed n he said there’s no way a tooth can bring about an attck.he gv me painkillers.which didn’t work.2days later I went bak.that’s wen he diagnosed me,he had gone back to his books to see what it could be.I’ve been on medication since January 2013 and am yet to see a neurologist.these attacks would even wake me during the nyt an All of a sudden its happening.its shit scary for u n those close to u,Tegretol 1200mg a day is helping me.I can manage though I’m tired n my thought process is sumhow muddled.I’m neauseous,irritable.I’m no longer the pwerson I ws and its taking a toll on my relationships coz I’m so angry.no one understands this disease,its unbelievable.those r the difficulties I face.but one day@a time.we are here for each other.
No to the slow part on my end. I woke up to hammer bows on my cheekbone and left temple. All I could utter to my husband was ""My skull! My Skull!" I was thinking "wow, if this is a migraine, this is really terrible!, that, and I have got to get a bone scan, cause the bones in my face are breaking down.
I took excedrin Migraine and did not help much at all, Did Ice on every place it hurt. That seemed to help, till I got to the doctor. He only gave me sinus spray, and Fioracet, That did take the edge off (think things were slowing down a little by then) His partner recognized it the next day, and put me on a more normal protocol.
No warning at all. A slight headache the night before but NO inkling.
Its early in the game for me. Lots still going on to figure out. MRI will be ordered today.
Hi, Mine started with a slight burning tingling feeling on the left side of my face which progressively became worse. This was twenty years ago. I have had remissions, medications by the ton and surgeries.
My very first doctor, just a general practitioner, not even a neuro diagnosed my condition, he knew right away what it was and put me on tegretol which helped. Unfortunately, I was heading back home and could not continue with that doctor. It took ten years to ffind another doctor who would believe or even listen to me.
Inretrospect, if you find a good doctor who gives you advice and listens to you, you are very fortunate and I would try to stay with him/her. I would also have opted for surgery much sooner if I had had the opportunity.
I believe my TN was caused by sports injuries to the head and neck, but obviously this is just my opinion, not my doctor's.
I had an MVD on my left side and so far (knock on wood) no pain, but my right side has fired up and I am back on meds.
This disease does, unfortunately, change you. I used to be party girl, very social, always going out, whatever it was. Now, I barely go out, it's too painful. I had to stop working last year because I could barely talk on the phone - a job I loved.
But it's not all bad, sometimes there are better days and you must never give up. Keep strong and possitive.
I have dealt ok with it. Extremely upset and obsessed when it first happened. Always reading about it, etc.... Then I decided that I am SICK of feeling that way and that I am GOING to enjoy my good times and IF AND WHEN the time comes that the pain isn't controlled with meds, I will get the MVD.
tacocat said:
Wow thanks! Nice to hear it is working well for you. I am so scared from some of the stuff I read!! I, too, kept going back to the dentist because both top and bottom jaw were aching every few days- like an absess. He couldn't find anything so i tried to talk myself out of it and just deal with the episodes. Pain has continued off and on but over the weekend it got nasty and more frequent. I am pretty sure this is what is going on from what I have read. Have you dealt ok emotionally with it?? I am so freaked out!!
THANKS!!! I needed to hear that! You are right !! I am sure focusing on every little sensation doesn't help!! I just need to get some meds so I don't feel like I cannot get control of bad pain if it comes.... do you have strong painkillers for if it gets that crazy bad way where you think you are having a stroke?? I just need to know I can do sometthing to control it!!
mine was while sleeping, it felt like i got stabbed in the face with in an ice pick!, i ran to the mirror thinking i must have been stung or bitten by something, but nothing was there! freeked me out. i was nursing a bulging disc in my back and was on oxy at the time too. the next day while washing my face in the shower i got it again pressing on my left cheek, i found that if i just kept pressing the pain would leave and everything was back to normal...and that worked for about a week! LOL omg did it let know who was in charge after that! this was in sept 2012/ after that it mellowed out with just some weird flare ups. i thought it was tooth related, but lucked out and got a good dentist that told me it had nothing to do with him and go see my regular doctor. i held off till this year, as it was just not that often that i had attacks. while searching to see what this could be i found TN and realized what might be the deal. i will going over the results of the mri on wednesday...and who knows from there. tegretol helped but gave me a rash, im on lyrica now (samples the dr had) and found that if i take one 50mg every 3 hours im almost pain free, and im not a zombie like the tegretol did to me. but lyrica is like 200 a bottle so not sure how that is going to work out
Sounds familiar-- Been having "tooth pain" for nearly a year off and on-- dentist couldn't find anything.. But last Thursday night WHAMMO had a nasty shot that went along lower jaw , upper jaw and then across the eyes-- I thought it was a stroke!! Since then my face has been twitchy and achy off and on-- I had to puree my grilled chicken tonight cause chewing is uncomfortable-- first dr. visit tomorrow -- need to see gp before can see the neurologist-- what a racket!! Hope to get in for an MRI asap!! I heard the tegretol gives people trouble-- maybe I can go straight on the lyrica!!! Thanks for your info!!
thanks for sharing.... it really sucks... I have heard people feel better on lyrica-- have you thought of trying that?? Ppl say tegretol makes you feel real tired and a lot of people get a rash... I go to the doc tomorrow--see what he thinks-- hope i can get an mri FAST!! you are right--we will get through this --so glad i found the site!!
nana said:
Hi mine starter with pins n needles on my right side of face really bad spasms that nearly closed my eys.this ws Dec 2011 to round Mayish.my GP said it ws an infection in the nerve n gave me steroids,bt that did not help.the same sypmtoms came bk Dec 2012 n then all of a sudden I felt these shocks,I thought mayb my dentist touched my nerve n then the one day I had an attacked afta breakfast.it was excrutiating ,I ws on the floor screaming with electricity splitting my whole head apart.my son on top of me screaming 'mama,mama' niether of us knu wat ws happening.I cried so hard from the shock,I thought I ws dying.this brought on a migraine.I went to do as soon as it passed n he said there's no way a tooth can bring about an attck.he gv me painkillers.which didn't work.2days later I went bak.that's wen he diagnosed me,he had gone back to his books to see what it could be.I've been on medication since January 2013 and am yet to see a neurologist.these attacks would even wake me during the nyt an All of a sudden its happening.its shit scary for u n those close to u,Tegretol 1200mg a day is helping me.I can manage though I'm tired n my thought process is sumhow muddled.I'm neauseous,irritable.I'm no longer the pwerson I ws and its taking a toll on my relationships coz I'm so angry.no one understands this disease,its unbelievable.those r the difficulties I face.but one day@a time.we are here for each other.
No tacocat, pain killers didn't help mine anyway, so no point in having them. When I had bad breakthrough pain, I just went back to the doc for med increases. I am doing really good at 1200mg Tegretol a day. Just really tired and forgetful. I guess 1200 is my working dose, because I tried tapering down to 1000 and if that went well, I was going to continue to taper down, but after 6 or 7 days I started having tingles in my face, then a couple days later I started to get a few shocks, so I went on back up to 1200.
tacocat said:
THANKS!!! I needed to hear that! You are right !! I am sure focusing on every little sensation doesn't help!! I just need to get some meds so I don't feel like I cannot get control of bad pain if it comes.... do you have strong painkillers for if it gets that crazy bad way where you think you are having a stroke?? I just need to know I can do sometthing to control it!!
Wow thanks! Nice to hear it is working well for you. I am so scared from some of the stuff I read!! I, too, kept going back to the dentist because both top and bottom jaw were aching every few days- like an absess. He couldn't find anything so i tried to talk myself out of it and just deal with the episodes. Pain has continued off and on but over the weekend it got nasty and more frequent. I am pretty sure this is what is going on from what I have read. Have you dealt ok emotionally with it?? I am so freaked out!!
I was at the health club about 3 1/2 years ago and my cheek got numb and tingly, went to my family Dr. and he tested me for a stroke, was not that. He sent me to a neurologist who tested me for exactly the same thing! He was a quack. Went to the dentist, nothing wrong. He sent me to an oral surgeon nothing wrong again. After another two or more years had a really bad episode over a weekend, was really disgusted so I went to an Ear Dr. he finally sent me for an MRI which showed nothing, but he did diagnose me he wanted me to go back to the same neurologist and I said no way. My Family Dr. said if I can keep myself comfortable with Advil to continue doing that which I have been. If I have a bad episode I take Vicoden. I have TN2
Hi KC, you said you had surgery by the top person on the planet. Who is that?
Thanks.
Kc Dancer Kc said:
There are only about 12 in 100,000 of us .... You do need accurate info!
Mine was not caused by oral surgery.... But the anatomy was loaded to start 4 hours afterwards....
2000 +people here will give you different answers to your above questions about pain frequency, duration,length of remission.... Disease is progressive....but not hopeless. I got diagnosed right away oct 2010.....took the meds that took away the pain and my IQ and researched here and TNA website....oct 2011... One year later had MVD surgery by the top person on the planet..... Now.. 1.5 yrs later.....have 2 to 5% pain. About twice weekly.....
One theme is mannnny of us have no pain while sleeping..... But we are so individual..... There are exceptions to every TN logic ..... (TN LOGIC)..... That is a pun! Been around since early humans..... Lastly.... It's when I found that faster treatment can be faster good results..... I flew out of state and scared to death....changed the course of my disease for now.... Might need 1 more MVD in a year or a decade.....whatever you do, concentrate on what the people here are doing to have less pain or no pain....what works and what is obtainable...... TN one and ATN are similar ... Sometimes different treatments....... I compiled a list of meds that people got relief from....topical and oral if you would like.
Keep posting....and after initial shock... Be proactive and remember you are the boss when it comes to hiring medical professionals
I just visited my neurologist yesterday and was diagnosed with TN. He prescribed Lyrica. His assistant gave me a brochure for a special program to get Lyrica for $25 a month. I don't know the details, but there's a website that should give you more details: LyricaSavings.com. I haven't gone for it yet since it's only day one on the medication, but will sign up if it works. Hopes this helps.
Christine
Mace said:
mine was while sleeping, it felt like i got stabbed in the face with in an ice pick!, i ran to the mirror thinking i must have been stung or bitten by something, but nothing was there! freeked me out. i was nursing a bulging disc in my back and was on oxy at the time too. the next day while washing my face in the shower i got it again pressing on my left cheek, i found that if i just kept pressing the pain would leave and everything was back to normal...and that worked for about a week! LOL omg did it let know who was in charge after that! this was in sept 2012/ after that it mellowed out with just some weird flare ups. i thought it was tooth related, but lucked out and got a good dentist that told me it had nothing to do with him and go see my regular doctor. i held off till this year, as it was just not that often that i had attacks. while searching to see what this could be i found TN and realized what might be the deal. i will going over the results of the mri on wednesday...and who knows from there. tegretol helped but gave me a rash, im on lyrica now (samples the dr had) and found that if i take one 50mg every 3 hours im almost pain free, and im not a zombie like the tegretol did to me. but lyrica is like 200 a bottle so not sure how that is going to work out
it says that only doctors can get them, so i just called the dr and left a detailed message so he can snag one for me! thanks!!!
Christine said:
Hi Mace,
I just visited my neurologist yesterday and was diagnosed with TN. He prescribed Lyrica. His assistant gave me a brochure for a special program to get Lyrica for $25 a month. I don't know the details, but there's a website that should give you more details: LyricaSavings.com. I haven't gone for it yet since it's only day one on the medication, but will sign up if it works. Hopes this helps.
Christine
Mace said:
mine was while sleeping, it felt like i got stabbed in the face with in an ice pick!, i ran to the mirror thinking i must have been stung or bitten by something, but nothing was there! freeked me out. i was nursing a bulging disc in my back and was on oxy at the time too. the next day while washing my face in the shower i got it again pressing on my left cheek, i found that if i just kept pressing the pain would leave and everything was back to normal...and that worked for about a week! LOL omg did it let know who was in charge after that! this was in sept 2012/ after that it mellowed out with just some weird flare ups. i thought it was tooth related, but lucked out and got a good dentist that told me it had nothing to do with him and go see my regular doctor. i held off till this year, as it was just not that often that i had attacks. while searching to see what this could be i found TN and realized what might be the deal. i will going over the results of the mri on wednesday...and who knows from there. tegretol helped but gave me a rash, im on lyrica now (samples the dr had) and found that if i take one 50mg every 3 hours im almost pain free, and im not a zombie like the tegretol did to me. but lyrica is like 200 a bottle so not sure how that is going to work out
My pain started at night this past week (June 2013). I was so sure it was a terrible tooth ache or absess. I called my dentist on Saturday but couldn't get in until Tuesday. Tuesday morning I couldn't stand it anymore and went to the ER. They did some blood work to look for infection, gave me an exam and couldn't find anything wrong. I work in Neurology (lucky me) at the Cleveland Clinic doing neuromonitoring of spine/brain surgeries so I have lots of friends in the field. I went on-line researching my symptoms and thought TN2 sounded like it was the culprit. I was able to get into to see a specialist in TN the next day. She thought right away it was TN2. My pain is constant. It's in my jaw, right in front of my ear and goes through both rows of teeth. I have a special diamond like focal pain on my chin. Once I had a different kind of pain that went under my eye. It was hot and I had pins and needles. I didn't last very long. To be honest it kind of felt good compared to the overwhelming throbbing pain in my jaw. I was started on trileptal and Neurontin. It made me groggy and drunk for two days but my pain was better. Then slowly I felt less groggy and the pain control is down to nothing. I'm back to putting ice packs and heating pads on my face and rocking in a chair. Will send my doc and email tomorrow. Should we keep trying these drugs and be patient or switch to something else? My MRI is wed. Hope it shows something so I can get MVD surgery and have my time as a TN2 patient be a short one. I need to be at work and provide for my family. I can't be disabled.