It's generally called break through pain. It's normal. If the frequency increases to A LOT of break through pain then that's when you talk to your neuro.
Yes and yes. Break through pain is what I call it. I'll be having the best day, almost forget I have TN and then ZAAAAAP!!! I'll be flarely for a hours after, whether is be tingling, itching, twitching or stabbing feelings afterwards.
Yep, breakthroughs are pretty common - but dependent on your meds and dosage, you might be able to bump up a dose. And it's a good idea to keep a pain diary because we can find unusual patterns outside our consciousness. And that's a "do as I say...." cos I just checked my PD to report and four days into the latest belter all it says is "fuck off" in huge black letters so I'm guessing we weren't having the best day š¬
We do have all sorts of subconscious cues tho and even if you just add them to the Massive List of Weirdmad Stuffs Going on in my Head, vol.237 it can help you plan round it, especially if you're driving or in charge of anything dangerous like my cat. Things like pressure and temperature are in the bailiwick of the Trigeminal Disaster, so it can help with adjustments to your routine. It's also really useful long-term, cos we tend not to notice small changes until they add up to big catastrophes, so just keeping a note can give you reassurance as to frequency, occurance, all that. I'm REALLY glad its responsive to meds, staying on top of it can make sure of that š
I agree with this advice to keep a journal. That's the only way I could explain it to my doctor well enough to get the treatment I needed. I wrote in a notebook, either during the weirdest or worst symptoms, or just after they've subsided. I would put asterisks next to words or phrases I considered most important, then go back and just write out a short summary. Then I read it to my doctor.
I also realized that, rather than using a pain scale, it made more sense to explain how it was all affecting my life.
When my Dr. heard that I spent many weekends in bed just trying to deal with the excruciating pain and trying to get just 2 more hours of sleep, he was concerned. I also told him after keeping the journal that I knew why my allergy tests were all negative. That the sneezing, for which I literally had to hold my head with both hands so it wouldn't trigger the neck spasms which led to more facial problems, was also a symptom of whatever was going on. It was back & forth, one thing affecting another.
I'm on the same med, I kept having flare ups. Sometimes zapa, sometimes other symptoms. The had to add baclofen and now they have added momentatine (sp?) which is an Alzheimer's med apparently. You might need a higher dose or an additional Rx.
To me, a flare up lasts a minute to a few minutes, but a zap happens quickly and strong. Like it startles me and then it's gone. I hope I'm making sense. It's hard to put into text sometimes.
Oh , perfect sense, I completly understand the startling zap, that is completly correct, it makes my whole body jump when a zap hits..and omg, are u serious , even thru the meds u get minutes long attacks while on meds...that's what I'm terrified of...my long attacks a fierce so I never want to feel them
I get significantly less now, I do take 12 pills a day. I finally have a referral for a neurosurgeon. Honestly it started about a year ago and it gave me horrible and anxiety but now I'm kind of at peace with it for a while. Don't let yourself panic because I feel like it makes it worse.
Panic anxiety and depression is what has been the absolute worst on me...my doc prescribed me xanax and I just want to live on them now...this has really effected my soul, ...I quit smoking after 35 years, I quit coffee, I wouldn't dare have an alcoholic beverage, I don't even knkw how to be me any more, ..I talk weird to save from a trigger, I eat weird,...I was the singer in a band, ..pfft forget that....it's been quite depressinĢg ...and it's so hard to get any solid answers on what u can and can't do because everyone seems to be so different...this one says no caffine, this one says I have 4 cups a day, ....so if someone has said it can be a trigger or aggravate it I just don't do it...I haven't touched a banana ...it's hard when u look at the long road ahead....I even ask are the meds really doing anything at all or have I just not had an attack , just the zaps that are exactly the same zaps I got in the beginning before I ever had an attack....ughhh...so much to wonder..I have an appointment with a neurosurgeon on the 27th..I hope for answers
That's interesting, I have no issues with caffeine, banana, ect. I do have issues if I bend over too long and the blood rushes to my face , or extreme temperatures being blasted in my face. Otherwise the pain is just random. Though when it first started,I didn't brush my teeth on that side for a bit and was terrified of the dentist (never was before). It ended up with me needing two root canals on that side. I was so terrified to get those teeth done but I knew I had to do it. Honestly it wasn't that bad.
Yeah..that's another problem I am facing and was waiting to ask the neurosurgeon what to do about it..I do have a bad tooth that needs to come out on my TN side...I am terrified to have a dentist open my mouth and pull it around because I know that is a trigger for me..
I don't know how to handle that....and u say being over is a problem..I swear I think turning my head is a problem for me...also when I'm in the last hour or 2 before it's time to take my pill seems like I start getting a lot of activity
I will say ,just do it. Just pull the trigger and get the tooth done ,I promise it will get worse if you don't. I was so scared I went to the sleep dentist but they wanted $13k!!! So went back to my regular dentist which is covered by insurance, and then I last minute ask that they had nitrous and they did, so I suggest that you get that just for your nerves. The first tooth was fine the second one I felt it just a tiny bit of uncomfortableness towards the last few minutes. Just ask for extra lidocaine also. I'm not nervous now if I have to have dental work again. Also take Tylenol beforehand.
Yes. I get steroid shots in my left sinusāthe site of the damageā on a quarterly basis. They do a lot to quiet the frequency but not the intensity of the āzaps.ā
Yep mine was pure electric never felt dull or burning pain
Started with tiny zaps turns out they were what I later called trigger warnings cause full blown episodes were like electric volleying up and down half my face lasting nearly an hour every time it triggered š
My zaps seem to come from and area just above my lip and just on the edge and under my nostril on the right side of my face and ever time I get a zap it was if I were carelessly talking or eating, ..if I am super careful and don't move the area much it seems my zaps are not very often but I swear everytime I say something or eat something and move my mouth with my guard down it never misses the chance to zap....and those are the same zaps that I was getting for about 6 months before I finally experienced an attack of the full on nerve pain freak out that lasted a minute or 2 that happened twice within 30 mins of each other and the day I said yep , ER here I come....that's the day I was put on the oxcarbazepine, started at 300mg twice a day and then after about 3 months they raised it to 600mg twice a day, but I still get zapped here and there and get the burning ripping feeling...and it seems to be the worst the last hour or 2 before it's time to take a pill...maybe they just aren't lasting long enough
Hmm I've had those trigger areas, mine kept changing thru out the years and it could also be a combination of several locations i got to learn my triggers to prevent episodes but sometimes it unavoidable like guaranteed episodes when brushing teeth or eating
I never bothered with ER nothing would work except anticonvulsants didn't feel they can do anything for me
Just keep communicating changes to your neurologist so they can fine tune your regimen
The meds i fell will never fully prevent episodes just lower its affect imo
Oh yes...this is very true...if I had to choose I will take the zaps over the attack any day....but I wish I didn't feel anything..those zaps always cause me to want to panic being afraid an attack is gonna breakthrough as well...and I hate it all ...I'll be having the best day that I can, almost forgetting about everything and then ZAP...and then it ruins my day as I now spend the rest of the day in fear and depressed because I don't know what's gonna happen next ...ughhh
My wife with even rarer trigeminal neuralgia, continuous pain called atypical TN lasting 24/7. Failed all meds (not tried Baclofen yet). Seeing oral-facial pain specialist in a few days. Anyone have results from Botox treatment?
It's generally called break through pain. It's normal. If the frequency increases to A LOT of break through pain then that's when you talk to your neuro.
Yes and yes. Break through pain is what I call it. I'll be having the best day, almost forget I have TN and then ZAAAAAP!!! I'll be flarely for a hours after, whether is be tingling, itching, twitching or stabbing feelings afterwards.
Yep, breakthroughs are pretty common - but dependent on your meds and dosage, you might be able to bump up a dose. And it's a good idea to keep a pain diary because we can find unusual patterns outside our consciousness. And that's a "do as I say...." cos I just checked my PD to report and four days into the latest belter all it says is "fuck off" in huge black letters so I'm guessing we weren't having the best day š¬ We do have all sorts of subconscious cues tho and even if you just add them to the Massive List of Weirdmad Stuffs Going on in my Head, vol.237 it can help you plan round it, especially if you're driving or in charge of anything dangerous like my cat. Things like pressure and temperature are in the bailiwick of the Trigeminal Disaster, so it can help with adjustments to your routine. It's also really useful long-term, cos we tend not to notice small changes until they add up to big catastrophes, so just keeping a note can give you reassurance as to frequency, occurance, all that. I'm REALLY glad its responsive to meds, staying on top of it can make sure of that š
I agree with this advice to keep a journal. That's the only way I could explain it to my doctor well enough to get the treatment I needed. I wrote in a notebook, either during the weirdest or worst symptoms, or just after they've subsided. I would put asterisks next to words or phrases I considered most important, then go back and just write out a short summary. Then I read it to my doctor. I also realized that, rather than using a pain scale, it made more sense to explain how it was all affecting my life. When my Dr. heard that I spent many weekends in bed just trying to deal with the excruciating pain and trying to get just 2 more hours of sleep, he was concerned. I also told him after keeping the journal that I knew why my allergy tests were all negative. That the sneezing, for which I literally had to hold my head with both hands so it wouldn't trigger the neck spasms which led to more facial problems, was also a symptom of whatever was going on. It was back & forth, one thing affecting another.
I'm on the same med, I kept having flare ups. Sometimes zapa, sometimes other symptoms. The had to add baclofen and now they have added momentatine (sp?) which is an Alzheimer's med apparently. You might need a higher dose or an additional Rx.
U said u get flare ups and zaps...what is a flare up like I comparison to a zap?
To me, a flare up lasts a minute to a few minutes, but a zap happens quickly and strong. Like it startles me and then it's gone. I hope I'm making sense. It's hard to put into text sometimes.
Oh , perfect sense, I completly understand the startling zap, that is completly correct, it makes my whole body jump when a zap hits..and omg, are u serious , even thru the meds u get minutes long attacks while on meds...that's what I'm terrified of...my long attacks a fierce so I never want to feel them
I get significantly less now, I do take 12 pills a day. I finally have a referral for a neurosurgeon. Honestly it started about a year ago and it gave me horrible and anxiety but now I'm kind of at peace with it for a while. Don't let yourself panic because I feel like it makes it worse.
Panic anxiety and depression is what has been the absolute worst on me...my doc prescribed me xanax and I just want to live on them now...this has really effected my soul, ...I quit smoking after 35 years, I quit coffee, I wouldn't dare have an alcoholic beverage, I don't even knkw how to be me any more, ..I talk weird to save from a trigger, I eat weird,...I was the singer in a band, ..pfft forget that....it's been quite depressinĢg ...and it's so hard to get any solid answers on what u can and can't do because everyone seems to be so different...this one says no caffine, this one says I have 4 cups a day, ....so if someone has said it can be a trigger or aggravate it I just don't do it...I haven't touched a banana ...it's hard when u look at the long road ahead....I even ask are the meds really doing anything at all or have I just not had an attack , just the zaps that are exactly the same zaps I got in the beginning before I ever had an attack....ughhh...so much to wonder..I have an appointment with a neurosurgeon on the 27th..I hope for answers
That's interesting, I have no issues with caffeine, banana, ect. I do have issues if I bend over too long and the blood rushes to my face , or extreme temperatures being blasted in my face. Otherwise the pain is just random. Though when it first started,I didn't brush my teeth on that side for a bit and was terrified of the dentist (never was before). It ended up with me needing two root canals on that side. I was so terrified to get those teeth done but I knew I had to do it. Honestly it wasn't that bad.
Yeah..that's another problem I am facing and was waiting to ask the neurosurgeon what to do about it..I do have a bad tooth that needs to come out on my TN side...I am terrified to have a dentist open my mouth and pull it around because I know that is a trigger for me.. I don't know how to handle that....and u say being over is a problem..I swear I think turning my head is a problem for me...also when I'm in the last hour or 2 before it's time to take my pill seems like I start getting a lot of activity
I will say ,just do it. Just pull the trigger and get the tooth done ,I promise it will get worse if you don't. I was so scared I went to the sleep dentist but they wanted $13k!!! So went back to my regular dentist which is covered by insurance, and then I last minute ask that they had nitrous and they did, so I suggest that you get that just for your nerves. The first tooth was fine the second one I felt it just a tiny bit of uncomfortableness towards the last few minutes. Just ask for extra lidocaine also. I'm not nervous now if I have to have dental work again. Also take Tylenol beforehand.
Ughhh..lol..I just has all of this ..I'm trying so hard to keep going but I can feel how much all of this has changed me already
Yes. I get steroid shots in my left sinusāthe site of the damageā on a quarterly basis. They do a lot to quiet the frequency but not the intensity of the āzaps.ā
Yep mine was pure electric never felt dull or burning pain Started with tiny zaps turns out they were what I later called trigger warnings cause full blown episodes were like electric volleying up and down half my face lasting nearly an hour every time it triggered š
My zaps seem to come from and area just above my lip and just on the edge and under my nostril on the right side of my face and ever time I get a zap it was if I were carelessly talking or eating, ..if I am super careful and don't move the area much it seems my zaps are not very often but I swear everytime I say something or eat something and move my mouth with my guard down it never misses the chance to zap....and those are the same zaps that I was getting for about 6 months before I finally experienced an attack of the full on nerve pain freak out that lasted a minute or 2 that happened twice within 30 mins of each other and the day I said yep , ER here I come....that's the day I was put on the oxcarbazepine, started at 300mg twice a day and then after about 3 months they raised it to 600mg twice a day, but I still get zapped here and there and get the burning ripping feeling...and it seems to be the worst the last hour or 2 before it's time to take a pill...maybe they just aren't lasting long enough
Hmm I've had those trigger areas, mine kept changing thru out the years and it could also be a combination of several locations i got to learn my triggers to prevent episodes but sometimes it unavoidable like guaranteed episodes when brushing teeth or eating I never bothered with ER nothing would work except anticonvulsants didn't feel they can do anything for me Just keep communicating changes to your neurologist so they can fine tune your regimen The meds i fell will never fully prevent episodes just lower its affect imo
My TN is controlled, too but I get occasional zaps. Iām just grateful to have the other pain under control.
Oh yes...this is very true...if I had to choose I will take the zaps over the attack any day....but I wish I didn't feel anything..those zaps always cause me to want to panic being afraid an attack is gonna breakthrough as well...and I hate it all ...I'll be having the best day that I can, almost forgetting about everything and then ZAP...and then it ruins my day as I now spend the rest of the day in fear and depressed because I don't know what's gonna happen next ...ughhh
My wife with even rarer trigeminal neuralgia, continuous pain called atypical TN lasting 24/7. Failed all meds (not tried Baclofen yet). Seeing oral-facial pain specialist in a few days. Anyone have results from Botox treatment?