I am trying to understand what others experience. When you are hit with an attack is it always debilitating, drop to you knees and cry type of attacks? Or do you have some lighter, yet uncomfortable, but I can still function attacks?
I have some short zaps that last a few seconds at a time but happen multiple times. I also have some deep, stabbing, unable to function attacks that can last for an hour or longer. I don’t tend to break down and cry unless I have had many of the more painfully type and the I think my emotion is not only out of pain but frustration and helplessness.
I have a variety of attacks. Day to day I get the shocking kind that last a few seconds. I also get the deep ache as if my nerve endings want to fire off but the meds I am on are blocking them. It feels like a deep bruise from my lip to my temple. This second pain was what got me to the neurologist because it wouldn't stop and I was miserable.
Now the very worst attack was a few years ago before I even heard of TN but I now recognize what it was. It was as if my face had molten lava poured into it. The pain was so horrendous that I literally could not stop crying. The tears just flowed down my face and I even cried outloud, which I never do. I remember calling my dentist (because I thought it was the mother of all toothaches) and cried, telling him that "this is the worst pain I have ever felt in my life". He gave me percocet and antibiotics and I was sitting, waiting in the pharmacists lobby with tears streaming down my face. I immediately downed three of the pills, not caring if I overdosed or not, and added 4 ibuprofin to the mix. The pain subsided but every 3 1/2 hours the zings started and I just kept downing pain killers. It was like this for 3 weeks before the endodontist numbed the tooth that we thought it was and did surgery, taking out the root. I started getting better but I was on so much pain meds that I really don't remember much during those weeks. Now, opiates don't work much for the pain or the zings but I am on klonopin and nortryptiline which is working well. People usually forget pain but I never forgot that attack.
I am so sorry, that must have been awful. Thank you for sharing.
I also had a root canal on my back molar. It did nothing, I still feel as if that tooth hurts constantly. I actually asked my dentist to pull all of my molars on my left side because of the pain. Thank goodness he wouldn’t do it and told me he didn’t think the teeth were my problem. Although he had no solution it did lead me in a different direction to find the cause.
My pain zings through all of my teeth. Starts in the uppers, and then rolls to the lowers. I have a constant pain in the back of my jaw and ear, but the meds help that. It lets me know when to take another pill. It starts throbbing and burning. I also had migraines on that side with a visual aura which the neurologist said were not related, but I feel they are. This site will provide you with a wealth of information.
I have been diagnosed with TN2. I have an dull ache all the time on my left side of my face. When i'm having an "attack", it feels crushing, like an elephant is standing on only one side of my face or as if there is a screwdriver in my jaw being cranked, constantly. My attacks can last 3 mins to 6+ hrs, non stop. Mine often do wake me from a sleep. But now that I'm on Tegratol, that hasn't happened. I also have many short episodes of what feels like a hot poker going into my ear, daily.
I agree with you I often cry out of frustration and helplessness, not just pain. I work as long as an episode doesn't last for hrs. I can handle them for a few mins on and off thru the day, but thats it . I work with the public, so I can't hide my pain for too long!
I have kept a journal of the major attacks. Yet, when I went to see my last neurologist, I offered him a copy and he said he didn't want it. I still think its worth me keeping.
Though my Neurologist has never said TN1 or TN2, I know that I have both. I can constant tooth pain that goes up to my temple, my eye and through the right side of my scalp. In addition to that, I get shocks that feels like an ice pick that start in my tooth and jab strait up - like dental work with no pain killer. I am on Carbamazepin which helps tremendously, but these breakthrough pains are kind of new and bringing me to tears sometimes - out of pain and frustration.
Twice through my 16 months with TN, the pain has been so unbelievable that I have been close to goign to the hospital for some kind of face numbing - luckily, with my meds and extra 1000 mg of tylenol, I've been able to get the worst under control.
I don't log my attacks per say, but when I have to up my meds on my own, I do log my meds.
Hi AlyssaBella, the attacks that I get are all over the map. I have pain most of my waking hours (though it isn’t constant, thank goodness). It typically has a burning and aching quality to it, but I also get occasional zaps. Less often, there will be a shock that stops me in my tracks. When my lower molars are affected, sometimes my ear on that side feels as though there is an ice pick being jabbed into it. Generally, I am able to function fairly well even when I am having a bad day pain wise. I have been dealing with this for many years and so have somewhat acclimated to it (bizarre as that sounds). Finding the right medication has made a huge difference in my life as well.
I have not kept a pain journal in the past simply because I thought that dealing with the pain day to day was taking up enough of my time and energy and I didn’t want to have to document it as well, but I think I am going to start doing it now. My upper right side has been really bothering me for the last few days and the pain is outside of my normal parameters. That said, I vaguely remember going through this before and the pain being of a similar type. Perhaps keeping a pain journal will highlight some patterns in my pain levels and help me anticipate how long something might go on for. I am also going to take note of what helped to calm things down so that I can hopefully get things under control more quickly down the road.
Do you keep track of your attacks? Have you found it to be helpful?
It has been a few weeks since I've been here and tonight, I thought I'd drop by and check out how everyone was doing. This specific entry caught my attention and thought I would also briefly share my experience. My first and worst episode happened on June 28th. When people mention the jolts of lightning, that is exactly what it feel like. The pain jolt lasts a second and seems to correlate with the beat of my heart. The longest bout was about 24 jolts. I could not have imagined how exhausting 24 seconds could be. Then, after the jolts ended, the 'mouth full of hornets' would happen and that could last upwards to 3-4 hours.
My primary physician gave me multiple Rx's that many here on this discussion board talk about. I held the bottles in my hand, then placed them in the back of my linen closet and decided not to take them unless.......the pain/jolts would not stop. I've been pain-free for 36 days! I thank God for these pain free days and know that remission can end abrupty at any given time. Before the pain totally stopped, it did seem strange that I'd have a flare up almost nightly at exactly 9:30pm with a few jolts and then the 'hornets'. I had read about this happening with others, but still don't understand why the pain returned almost on a schedule.
I've been taking B-12 tablets that I disolve under my tongue twice daily, but other than that...I can't put my finger on anything I'm doing differently than I was doing when this started. I saw 3 dentists who all agreed that this was TN1 and my primary care physician added TN2 for the 'hornets'.
Finally, there was one evening, but the remission began that I got 4 jolts that were horribly intensive that rather than running horizontal with my tooth/gun line, shot upwards on a diagonal that felt like it ran behind my right eye and ended in the top of my scalp. That was only one time, but I remember running screaming to my husband the pain was so bad. Those who are closest to us understand they are helpless to make the pain go away, but they are just there to love us thru the pain.
Now that I am on meds, I have not had the "drop to your knees" attacks anymore. I have quick little stabs now, but nothing like I had before meds. I am thinking I need to increase my Tegretol to stop the little breakthrough stabs.
nannie, what dose of tramadal do you take? Is that pain meds? Never heard of taking that?
Nannie said:
It has been a few weeks since I've been here and tonight, I thought I'd drop by and check out how everyone was doing. This specific entry caught my attention and thought I would also briefly share my experience. My first and worst episode happened on June 28th. When people mention the jolts of lightning, that is exactly what it feel like. The pain jolt lasts a second and seems to correlate with the beat of my heart. The longest bout was about 24 jolts. I could not have imagined how exhausting 24 seconds could be. Then, after the jolts ended, the 'mouth full of hornets' would happen and that could last upwards to 3-4 hours.
My primary physician gave me multiple Rx's that many here on this discussion board talk about. I held the bottles in my hand, then placed them in the back of my linen closet and decided not to take them unless.......the pain/jolts would not stop. I've been pain-free for 36 days! I thank God for these pain free days and know that remission can end abrupty at any given time. Before the pain totally stopped, it did seem strange that I'd have a flare up almost nightly at exactly 9:30pm with a few jolts and then the 'hornets'. I had read about this happening with others, but still don't understand why the pain returned almost on a schedule.
I've been taking B-12 tablets that I disolve under my tongue twice daily, but other than that...I can't put my finger on anything I'm doing differently than I was doing when this started. I saw 3 dentists who all agreed that this was TN1 and my primary care physician added TN2 for the 'hornets'.
Finally, there was one evening, but the remission began that I got 4 jolts that were horribly intensive that rather than running horizontal with my tooth/gun line, shot upwards on a diagonal that felt like it ran behind my right eye and ended in the top of my scalp. That was only one time, but I remember running screaming to my husband the pain was so bad. Those who are closest to us understand they are helpless to make the pain go away, but they are just there to love us thru the pain.
I also take tramadol. It is a non narcotic pain killer. I actually started taking it for depression because it has some effect on the neurotransmitters and all other anti-depressants don't work for me anymore. Tramadol is used a lot where addiction is a concern, although because of the effect on neurotransmitters you can't just stop your pills suddenly. Just fyi
Actually for me, it doesn't work well on other sorts of pain. For bad pain like a toothache, I take vicodin or percocet. But I really think it's helped with the TN pain because I know when I miss a dose and I get this ache in my face. It's cheap because it's been around a long time, in veterinary medicine.
I take the max dosage of 400 mg. every 6 hours. AND it causes constipation, so use docusate (a stool softener under the name ducolax stool softener but I get the generic brand because I use it twice a day.
People either love it or hate it but since it's non addicting doctors are not adverse to prescribing it.
Tina
Kelly Hatcher said:
nannie, what dose of tramadal do you take? Is that pain meds? Never heard of taking that?
Nannie said:
It has been a few weeks since I've been here and tonight, I thought I'd drop by and check out how everyone was doing. This specific entry caught my attention and thought I would also briefly share my experience. My first and worst episode happened on June 28th. When people mention the jolts of lightning, that is exactly what it feel like. The pain jolt lasts a second and seems to correlate with the beat of my heart. The longest bout was about 24 jolts. I could not have imagined how exhausting 24 seconds could be. Then, after the jolts ended, the 'mouth full of hornets' would happen and that could last upwards to 3-4 hours.
My primary physician gave me multiple Rx's that many here on this discussion board talk about. I held the bottles in my hand, then placed them in the back of my linen closet and decided not to take them unless.......the pain/jolts would not stop. I've been pain-free for 36 days! I thank God for these pain free days and know that remission can end abrupty at any given time. Before the pain totally stopped, it did seem strange that I'd have a flare up almost nightly at exactly 9:30pm with a few jolts and then the 'hornets'. I had read about this happening with others, but still don't understand why the pain returned almost on a schedule.
I've been taking B-12 tablets that I disolve under my tongue twice daily, but other than that...I can't put my finger on anything I'm doing differently than I was doing when this started. I saw 3 dentists who all agreed that this was TN1 and my primary care physician added TN2 for the 'hornets'.
Finally, there was one evening, but the remission began that I got 4 jolts that were horribly intensive that rather than running horizontal with my tooth/gun line, shot upwards on a diagonal that felt like it ran behind my right eye and ended in the top of my scalp. That was only one time, but I remember running screaming to my husband the pain was so bad. Those who are closest to us understand they are helpless to make the pain go away, but they are just there to love us thru the pain.