Stabbing jolt that lasted 40 minutes?

General General TN & GPN (Old Site)
1

Hello, this is my first post and I have an important question.

I was diagnosed with TN about ten years ago. I have had very 'typical' TN with stabbing electroshock jolts that have mostly happened when eating and talking. My TN episodes have lasted anywhere from 4-6 weeks to a year or more. Sometimes it goes away for months or a year at a time for no apparent reason.

Two years ago, in the spring of 2012, my TN was much worse than it had ever been. The jolts were horrific, and I was probably suffering through 100-200 of them a day. The only "good" news was that the pain would only last for a split second at a time.

Then one day in June, I touched my face with a towel, and I got a jolt - AND THE PAIN DID NOT STOP. It was like someone was holding a cattle prod to my face non-stop. The searing, stabbing pain was maybe an inch above my upper lip and an inch to the right of my nostril (right side of my face).

I was home alone and was screaming and pounding the walls, hoping that it would stop. After about ten minutes I managed to call 911, although I could barely barely talk. An ambulance came, and the paramedics had no idea what was going on with me. It was as if I'd been shot in the face with an invisible bullet. They took me out into the ambulance where I was screaming and yelling, and managed to get a few words out. They were calling the hospital, trying to get a neurologist to meet us in the ER, when -

IT STOPPED. THE PAIN COMPLETELY STOPPED, AFTER ABOUT 40 MINUTES OF INSANITY.

During the past two years, I have been relatively pain free. After the "Big Jolt" I had no pain for the better part of six months. Since then, I have had brief episodes of 5-6 jolts a day, for maybe a few days or a week, and then I will be pain free for a month or two. Or three.

It is as if the nerve just TOTALLY wigged out for 40 minutes, and somehow sorted itself out.

Has anyone ever had an experience like this, or heard of one? None of my doctors have ever heard of anything like this happening with TN.

Thanks for any info, and my best wishes to everyone here.

Michael

2

That sounds horrific Michael. I have not had the same experience, but I have certainly had crisis episodes if severe pain, which has soon after become managed. I hope you never have this again.

3

Hey there! Sorry about your episode. I will say that I’ve been mostly pain free (knock on wood) for the last 4 years. I do get break through pain when it rains or if I forgot to take my meds. Its bad but I’ll take it compared to what I use to go through. Right around the time my meds start to work way back when my last and worst/intense attack lasted 40-60 mins. It ended as abruptly as it started. It literally felt as if the nerve short circuited itself. My neuro said this is common and is usually followed by periods of being pain free which was true for me. All of my attacks up to this point lasted on and off for hours and hours with the pain jumping around as well as some constant throbbing. Very atypical. Nothing like this one attack though. To date it is the worst of all the TN pain I’ve experienced. It stayed at a 10 with my entire right side of my face down to my neck burning with a fire/acid sensation. It would increase to what felt like a 12 and come back to a 10 but it was almost 100% debilitating when it rose to 12. I was driving on the hwy and had to choose between driving myself straight to the ER or pulling over. I powered through and drove the short distance home so I could take my pain meds. I don’t like to drive on them. As I pulled in it was like it shorted out and just stopped. I have always had a feeling stress was a big trigger for me and when this happened it reconfirmed it for me. The relief of being home seemed to help. Anyways hopefully your experience will bring a period of remission.

4

While TN can go I to remission it was explained to me that it is a progressive disorder and can worsen each time it returns. Its very possible you went from having typical TN to Atypical. Just my opinion but something to look into.

5

Michael, the only way I can relate is that when I first was attacked with TN, it was after a dental procedure while I was living in Oregon. I had horrible pain, but it didn't take me long to figure out that I had TN (I use to work for a Neurosurgeon, so I recognized the symptoms). I immediately went to a neurologist, was started on Tegretol and it took the pain down to a manageable state with break thru happening periodically. Then I moved to South Carolina and the beast returned with a vengeance. It took me a long time to figure out that it was the change in elevation and the constant change in weather. Every time we get a storm here in SC which can be everyday, my pain would come on until the storm actually hit and then I would go back to normal. We recently took a trip to the mountains and by the 2nd day I was in so much constant pain that I was "out of it" from the pain and the only words I could get out was "it hurts". They had to take me to the ER by ambulance. Fortunately they took me to a hospital about 30 minutes away and off of the mountain and I came back to normal after a few hours. The high altitude of the mountain brought on the pain. I guess what I'm saying have you had any changes in your environment that might be triggering your pain?

Glad you found us and are using the site to the way it was intended - to bring people who deal with this condition together so we can share like experiences and learn from one another.

Interesting article about Barometric Pressure (http://www.fpa-support.org/2013/09/why-does-pain-get-worse-when-a-storm-is-coming/)

6

Lindsey - Thanks for sharing. This experience of yours sounds very similar to mine, and indeed, I have been relatively pain free since the 40 minute blast. It is good to hear that your neuro was familiar with this kind of episode - this makes me feel a bit better, if that makes any sense.

Lindsey said:

Right around the time my meds start to work way back when my last and worst/intense attack lasted 40-60 mins. It ended as abruptly as it started. It literally felt as if the nerve short circuited itself. My neuro said this is common and is usually followed by periods of being pain free which was true for me.
7

Gail, thanks for sharing. Although I have tried, I have never been able to correlate my TN episodes to anything else in the past. It is definitely not stress related. Regarding a change of environment, in past years especially I have done a tremendous amount of air travel. I think there may have been a couple of times when I was in the middle of a TN episode and flying on a plane made it worse, but I couldn't say that flying and travel ever provoked an episode. And I was at home when my "big jolt" occurred.

The only time I had a TN episode that I could tie to anything was actually the last one I had - last month for a week. It started up shortly after a dentist appointment where I had an upper right tooth drilled and repaired. I have had lots of dental work in the past, and nothing happened, but this time it did. It is possible that the timing was coincidental.

Thanks again - I will definitely read that article about barometric pressure.



Gail C said:

I guess what I'm saying have you had any changes in your environment that might be triggering your pain?

8

If any of the pain is INSIDE the mouth - there is lidocaine mouthwash....RX

I saw your profile - PLEASE consider MVD before Gamma -

Gamma will make an MVD not work as successfully

Most important - of course see at top notch TN surgeon

9

Greetings, yes I have very similar symptoms. I have had to endure this for twenty five years. Hope you can find some lasting relief. Cheers Joe

10

Hi Michael,

I have definitely had the same thing happen to me in the past when my TN was at its worst. I timed it one time and it was for 30 minutes of nonstop burning, searing stabbing pain. I was home alone the one time also and just cried and screamed until it stopped. My husband witnessed several of them too. I have had gamma knife, an MVD and two radiofrequency procedures done. I hope I never have the pain to that extent again because I seriously don't think I could handle it again. I hope this helps you. Laureen

11

Thanks for the advice. Fortunately, I have been mostly pain-free for the last two years, so I have not had to explore surgical options. But I will keep this in mind if and when things get horribly bad again.

Kc Dancer Kc said:

I saw your profile - PLEASE consider MVD before Gamma -

Gamma will make an MVD not work as successfully


12

Laureen, I am so sorry to hear this, but thanks for sharing - I appreciate knowing that someone has experienced the same sort of episode. It is amazing how tough we can be when we need to be - somehow, we DO get through these things. I hope you never have an attack like this again.



hav2hope said:

Hi Michael,

I have definitely had the same thing happen to me in the past when my TN was at its worst. I timed it one time and it was for 30 minutes of nonstop burning, searing stabbing pain. I was home alone the one time also and just cried and screamed until it stopped. My husband witnessed several of them too. I have had gamma knife, an MVD and two radiofrequency procedures done. I hope I never have the pain to that extent again because I seriously don't think I could handle it again. I hope this helps you. Laureen

13

Michael,

This exact same thing happened to me. Had on again off again pain. and then the nerve became so damaged that I suddenly experienced pain so bad I thought I would die. I had my MVD two weeks later because meds stopped working. My nerve had a huge dent in it from the artery pressing on it for so long. It's been over a year that I'm pain free. Please explore the possibility of an MVD.

brownkat

14

Thanks for the info brownkat. Fortunately, since the huge 40-minute pain jolt two years ago, I have been mostly pain free. I haven't been inclined to have the MVD or gamma ray surgery because I have been in remission. Although I am fairly certain that ultimately the TN will return (it always has in the past), I don't know 100% that I need the surgery, or that the surgery will have worked, if I don't have symptoms. Very glad to hear that you have been pain free - it is a wonderful thing!!

brownkat said:

Michael,

This exact same thing happened to me. Had on again off again pain. and then the nerve became so damaged that I suddenly experienced pain so bad I thought I would die. I had my MVD two weeks later because meds stopped working. My nerve had a huge dent in it from the artery pressing on it for so long. It's been over a year that I'm pain free. Please explore the possibility of an MVD.

brownkat

15

PS… I flew to my MVD in remission…off meds… i was already booked,!!
and knew it would be most certain worse if i didn’t give it a try.

Do what you need to do to get your best treatment!

16

HI Michael I am sorry to hear about that horrible bout of pain. A few weeks ago after I had been suffering with intermittent bouts (10-15/day, short), I had a similar experience, although perhaps not quite as high on the pain scale as you describe. I was carefully brushing my teeth and since I can't spit, I just let the toothpaste "fall out" and then carefully wipe my mouth. A brief touch with towel and BAM I set off an episode that lasted for about 25 minutes. I'd never had a long bout of pain like this. A few years ago I'd had a few lightning strikes crumpling me to ground, but they lasted 4-5 minutes versus this, which was so long. At first it was a manageable (really not manageable but in this world of TN, it was) but then it got worse and my whole right side of my head ached and pounded and throbbed. I tried to call my sister but couldn't talk so texted her instead. And I managed to get an ice pack in desperation and remarkably after 5 minutes of ice, the pain just subsided. After that the short attacks continued but I have not had a long bout again. I started to carry ice packs with me everywhere as the 10-15 bouts per day escalated to 40-50, and I wonder if the ice was helping to keep the attacks shorter.

17

Hi, that is exactly what my pain is like when I wasn't on decent meds ... I was in hospital twice due to pain that was like an electrified sword sitting through my face that did not go away for up to an hour at a time. So bad I had tears rolling down my face, could not talk, could only rock back and forth to try and deal with it. So I have some empathy for you. You're not the only one! It was still TN, it's still the trigeminal nerve, I had one neuro try and tell me because it wasn't short shocks it wasn't TN but that's totally wrong (considering it went away with tegretol).