How long from your FIRST ATTACK until your NEXT big TN ATTACK?

I started getting a "toothache" this week, that's with toothache with big "hand quotes". Since of course, there's nothing wrong with my teeth. It scares me of course since that's how the TN has started for me every attack. It doesn't mean I'm going to get one, I know, but I'll tell you, just the thought of that pain is scary!

The one thing I never quite got from people's TN experience in the group was how long between their first attack and then second big one? My first one came in clusters over a period of about five days, then gradually stopped until all that was left was a twitch under my left eye. I had a little TN attack weeks after that and then pretty much nothing but some twitching until now when the toothache is back which is five months later. (first TN was in October 2011)

Thank you everyone. Much Love and HUGS, Julie, Phx, AZ

Wellllll, now that you ask -- I haven't updated here - but I got TN1 in Oct. 2010, got on trileptal, hated it, had MVD Oct. 2011, and this week - saturday actually had my 2nd big attack

So much for brain surgery! I know cognitively that the Nerve can take a year to settle after MVD-- but damn!

- but I' sticking much hated trileptal down my throat so I can go on a cruise ship next week!

Its been 10 months since by last big attack. I have had aches/twitches/tingling/burning/toothache since but no big attack. These other sensations come and go but they are nothing compared to the TN1 attack. When they do happen almost every day a few time a day, i always have the fear that a big attack will follow or that this will become 24/7 or increase in pain. So far that has not happened. Hope this is of a help x

KC sorry to hear that, hope you have a good cruise and relax x

Every single person is different Julie. Some have their first attack that has never gone away. Some say 2 hours, some say 2 years, and everything in between. My first attack lasted 18 months or more.

every day - many few times a day. even when it's "good" it's bad.

Julie, It looks like PEOPLE ARE MISREADING YOUR QUESTION! No one has answered about their FIRST attack, to their SECOND attack except KcDancer and I.


I know Sheila! LOL It always happens like this when I ask this question. I'm glad you know what I meant as that helps me alot. My first attack was so bad, and thank goodness I've not had one like that again so far. Just little "mini attacks". Still it was so traumatic and surreal that I can't let go of it or the fear of having it ever again. I still have the twitching quite often to remind me of it...that toothache (not really a toothache) dissipated so I'm pretty sure an attack is not coming on. Phew! (wipes forehead).

I'm about to watch that video you sent me of what your ex does (produces). Love ya, Julie

Oh I'm glad your toothache/nerve pain eased up. Yes, the pain is so traumatic, that as soon as I get even mild symptoms, I almost freeze, scared silly that it will get unbearable.

Go up top and click "edit discussion", then put "FIRST ATTACK" in capitals and NEXT BIG ATTACK in caps too. Maybe all of us who are in a pain haze will see that more clearly. I misread things so often its embarassing.

I found this interesting. As I am still in denial!!

Your my stories sounds similar to mine.I've not had a bad attack for around a year now.But I get an acheing

pain every day.Comes in waves.Guess I'm due a humdinger.If I think about it I get scared.It is frightening.

I can't recall my first attack as I'd had sooo many tooth absesses that over a period of time the pain kept coming and i ran out of teeth!!There was a time when I had 4 absesses at once.That feels similar to what I can a humdinger.

I didn't know anything about TN then so It's been part of my life for 25 years.I only started meds a year ago.

Jacksharky are you sure they were absessed teeth? Most of us thought we had dental problems and had teeth removed, but the pain was still there. It may have been TN the whole time for you.

It all started with absesses and somewhere along the line the absess stopped and the pain continued.They were definatly absesses as they smell horrid when they are opened.I remembered going from dentist to doctor and they both refused to treat me and after a few weeks the pain went and I just got on with life.Had two small children and work etc. That happened once or twice a year but No one helped!! Pain would generally last two weeks and do.The odd stabbing and acheing were almost normal.I just thought I had bad teeth!!!

OIC Jacksharky. Well you're sure not alone, being one that started with dental pain.

My first lightning attack was a 10 on a scale of 1 to 10 was at 3.30 am and the second was at 4.09am the next morning. It was one a night for four days then gradually got more often in the following days. My jaw pain started about 18 months before and was up and down on pain.


Hi all, I started particpating in group discussions when i was in pain. When the pain went away, I thought i was okay. Everybody is so right. I was pain free for about 5 mos. and stop taking the meds because i can barely get the pills down my throat. I hate medication and sometimes would endure the pain and go to the hospital for pain med through I.V just so i can sleep peacefully. GUESS WHAT? My pain is returning will dull throbbing beginning in my teeth. Mind you, I had a tooth pulled because i thought the pain would go away and it didnt go away completely but enough to live with. I'm tired of the doctors increasing meds tosee what work adn what doesn't. I cant even remember the name of the meds adn when the pain attacks me, i feel it in my ear, teeth, jaw and throat but all on the left side. Personally, I'm tired because the pain wont go aay wehn it start and sometimes I'm in severe pain for two to three days. Sometimesd I get so desperate to relieve the pain that I do depend on pain killers and havea tendency to take more than i need just to get some relief. I try to hide how i am feeling at work adn everyone associates my silence with neig mean adn dont take me serious. My job is at stake because of my performance. I know something has to give but no matter what I decide, i jepardize my livelihood. I'm tired of one pain after another and have no new advice. Emergency rms don't take it serious. I begged them to give me a heating pad, I was in so much pain. My blood pressure was 250 over 123. Get rid of the pain and my blood pressure went down. The morphine ends and my pain returns. Morphine dont do much but getting rid of some of the pain is better than nothing. I am seriously thinking about suggesting surgey. I havea 3 yr old who dont understand and a husband who doesnt understand. I work about 60 hrs per week and go to school full time and really dont know what else to do. ANY THOUGHTS?????????

Toni, many/most of us can't handle the grogginess you feel when taking anti-seizure meds for TN. If morphine helps, talk to your Dr. about getting those in pill form. This is the most severe pain a human can have, and maybe you can take a small dose of morphine to be able to function better. For the first 2 weeks, you feel sleepy/groggy from that too, but that goes away. I was put on morphine to prevent attacks because my BP gets so high and my heart has stopped during TN attacks.I find them to be better than lortab or vicdin because they don't make your brain spin like those meds, and less constipation. Maybe just tell your doc you need help to find the right dosage of the pain medicine you already take and tell him you work 60 hours and go to school so you need to be able to function pain free.

toni said:

I work about 60 hrs per week and go to school full time and really dont know what else to do. ANY THOUGHTS?????????

Interesting question. While on neurotin (not sure of spelling) thought it was doing a great job of pain control. Until one day while brushing my teeth...the pain hit me with shocks that all of a sudden increased to such a rapid pace, it blew into a full head spasam and I thought I was going to die. This lasted about 15 seconds and then stopped. It scared me so bad

oops wasnt finished! It scared me so bad...went to Doctor the next day and he put me on Tegratol. Have not had that horrible spasam thing again. Can't wait for surgery and hope it works. Going to UofM in Ann Arbor Michigan next week. Have a backup appt. in the Mayo clinic in May if I do not like what I hear at UofM.

Best of luck to you Bob! So I assume you have type 1 TN?

Yes...type 1. The spasm thing freaked me out.

Sheila W. said:

Best of luck to you Bob! So I assume you have type 1 TN?