My god…why why why why…TN stayed away for awhile(stayed away for about almost a month) then comes back like a ton of bricks…What is one to do…I dont know what to do.I know go back to the doc.I hate the fact of adding more meds to what im taking on how it will affect me.Everytime i add meds the side affects really miss me up.Im so fustrated!!! I justed started back to work after being off for three months because of this STUPID TN…Sometimes u wonder what u did in life to deserve this.I HATÙE TN I HATE TN I HATE TN.Im sorry who every is reading this im just so angry and sad and fustrated…I was at work today and justed wanted to go in the corner and cry.Sad when ur co workers sad ohh my u look awful and what is ur doctor doin for u and all u can say is ohhh just giving me meds.God help me cuz one can only handle this for so long and then just want to give up… Hope ur all having a better pain free day
I won’t say, “It gets better” but maybe if you’re like me, it does become more familiar. It’s a terrible illness to “get used to” but it’s the illness that we have.
Isn’t it weird, that after dealing with horrible episodes of nerve pain myself for most of my life now, that my current view is that my least complicated days are those when I am in severe pain? I don’t think I’m any different than you, Marina, except perhaps that I’m several decades down the road with this illness, and one thing is very clear for me on a day when I begin to have severe pain: I KNOW what I am going to do. And that is, Probably Nothing. I’ll just endure, medicate the pain, and fight the battle, which might last for six hours or up to three days. This has become the most constant ritual in my life: fighting the monster that is frequent, agonizing pain.
On a good day, I might do something quasi-normal, and even try to go somewhere. Of course I am rarely well enough long enough to PLAN anything in advance, so I do simple things, like shop for groceries or pick up refills, take a meaningless drive, write an e-mail, and if I am lucky, I will “catch” someone smiling. It could be the kid at the checkout counter, or the driver I let cut into busy traffic ahead of me. Or it could be you. I’ll take my dose of “smile” any place I can find it!
It’s not that I’ve given up or lost my mind, although surely I’ve come very close to doing both of these things on a very regular basis. But when a severe episode of pain comes, I am so well ultra-conditioned, like a dog that bows its head in awful, awkward submission because it lives, or rather it exists, with an owner who frequently torments and beats it. I know what to do.
This probably reads as a tragedy, but I really do retreat into a comfortable routine when a painful episode begins. After years and years of suffering as a kid with no medication, now I come “well-armed” into this fight. I no longer have much of any support system, few family or friends that understand, not in this Area Code, anyway, and it’s been nearly a decade since I left my job and career. I survived from my teens, into and through my twenties, and thirties, and forties, and now as I head into my fifties, I am just starting to accept that I am totally disabled by nerve pain. We give it a fancy name and call it “Trigeminal Neuralgia,” but that term of an “invisible illness” seems to send people running from us! Seriously, if we wanted more sympathy, we should place a Band-Aid on our forehead.
I never conquered the pain, but it hasn’t quite vanquished me yet, either! I spend my energy not looking for that elusive “cure” but mostly just managing the pain as best as I know how, and I’m often okay with this. I live an extremely isolated life, if one can even call it “life,” but here I am. I can be feeling fine one moment, and then in the time it takes to finish this sentence, I can begin to have severe nerve pain. My pain and its current diagnoses fall more toward the “Type 2” or “Atypical” variety, but most of those here who have the “regular unleaded” variety of Trigeminal Neuralgia will relate to at least some of my symptoms, as well as the profound isolation.
Sometimes I laugh when I think that I know exactly how many minutes and seconds it takes my medication to begin to do its job! And when the attacks do come … and trust me, I’ve never lived more than a few weeks in over thirty-eight years without the pain showing its ugly-uninvited self, it is after all, at least familiar, well … I know what I must do. Maybe I was thinking of going for a walk, or trying to do something, ever hopeful that I might find a friend, see a sunset (or even have it shine on me, for just a moment), or yes, even “catch” that elusive smile, even from a stranger, that smile that will keep me going for another month. But when the pain strikes, all of that gets put “on hold” as it has been placed so very many, many millions of times before, and I get ready to deal with the savage but familiar pain beast once again. And, like you said, “Grrrrrrrr.”
But at least it’s familiar. And I know what to do. Carry On! (jqt)
john quill said:
Wow John, I've never heard it explained as eloquently as this - I hope you don't mind if I quote you sometimes. Marina, you WILL find the strength to endure this. It DOES take forever for the doctors to get us to a place where the pain is bearable. Heck, it took over a year for me to even get diagnosed. But you will get through this. Please just keep coming here and telling us how it is, You will find that we all understand. I know that that sometimes doesn't count for much, when you are suffering so bad, but you will never suffer alone. Hugs, Lily"But when a severe episode of pain comes, I am so well ultra-conditioned, like a dog that bows its head in awful, awkward submission because it lives, or rather it exists, with an owner who frequently torments and beats it. I know what to do"(jqt)
well john, you did it! summed it all up perfectly, clear cut honesty, and explained the unexplainable!
yes we learn to do our best and live with it! we learn to take advantage of the good days or good moments, and savor all we can get. hold onto your faith, keep your friends close, and those who understand even closer!
Why, of course you may quote me!
I’ve been quoted before, and found it to be quite harmless, even nice : - )
“Sometimes it would stop raining long enough for the stars to come out.”
I agree with you marina, cos the pain I am having today is like none I have had yet. Yet I have been reading the discussions and have figured out the reason I am in so much pain today, and why it started up a little bit at a time this week. I work nights and when they offer me OT I take it. I did that this week and as the week went on my TN was more active(so to speak). I mean it was more there and shocks of pain would be there. I woke up today and I can barely drink anything. My knee was killing me from something else and I needed to take advil. I could barely open my mouth to out them in and I still need to take my tegretol.
Keep reading the discussions on here I find them very helpful.
Thank you everyone
I agree John Terrible illness to get used to…Don’t know if ill ever get used to this monster.
On my good days i was happy got to spend a couple windy days out side with my little guy.(i tried to explain that to ppl who dont have this monster and they looked at me like i was crazy.They truely dont understand what the wind does to my pain)I guess all i can do is wish and pray for more good days.Thanks John for ur reply.Hope ur having a pain free day
john quill said:
I won’t say, “It gets better” but maybe if you’re like me, it does become more familiar. It’s a terrible illness to “get used to” but it’s the illness that we have.
Isn’t it weird, that after dealing with horrible episodes of nerve pain myself for most of my life now, that my current view is that my least complicated days are those when I am in severe pain? I don’t think I’m any different than you, Marina, except perhaps that I’m several decades down the road with this illness, and one thing is very clear for me on a day when I begin to have severe pain: I KNOW what I am going to do. And that is, Probably Nothing. I’ll just endure, medicate the pain, and fight the battle, which might last for six hours or up to three days. This has become the most constant ritual in my life: fighting the monster that is frequent, agonizing pain.
On a good day, I might do something quasi-normal, and even try to go somewhere. Of course I am rarely well enough long enough to PLAN anything in advance, so I do simple things, like shop for groceries or pick up refills, take a meaningless drive, write an e-mail, and if I am lucky, I will “catch” someone smiling. It could be the kid at the checkout counter, or the driver I let cut into busy traffic ahead of me. Or it could be you. I’ll take my dose of “smile” any place I can find it!
It’s not that I’ve given up or lost my mind, although surely I’ve come very close to doing both of these things on a very regular basis. But when a severe episode of pain comes, I am so well ultra-conditioned, like a dog that bows its head in awful, awkward submission because it lives, or rather it exists, with an owner who frequently torments and beats it. I know what to do.
This probably reads as a tragedy, but I really do retreat into a comfortable routine when a painful episode begins. After years and years of suffering as a kid with no medication, now I come “well-armed” into this fight. I no longer have much of any support system, few family or friends that understand, not in this Area Code, anyway, and it’s been nearly a decade since I left my job and career. I survived from my teens, into and through my twenties, and thirties, and forties, and now as I head into my fifties, I am just starting to accept that I am totally disabled by nerve pain. We give it a fancy name and call it “Trigeminal Neuralgia,” but that term of an “invisible illness” seems to send people running from us! Seriously, if we wanted more sympathy, we should place a Band-Aid on our forehead.
I never conquered the pain, but it hasn’t quite vanquished me yet, either! I spend my energy not looking for that elusive “cure” but mostly just managing the pain as best as I know how, and I’m often okay with this. I live an extremely isolated life, if one can even call it “life,” but here I am. I can be feeling fine one moment, and then in the time it takes to finish this sentence, I can begin to have severe nerve pain. My pain and its current diagnoses fall more toward the “Type 2” or “Atypical” variety, but most of those here who have the “regular unleaded” variety of Trigeminal Neuralgia will relate to at least some of my symptoms, as well as the profound isolation.
Sometimes I laugh when I think that I know exactly how many minutes and seconds it takes my medication to begin to do its job! And when the attacks do come … and trust me, I’ve never lived more than a few weeks in over thirty-eight years without the pain showing its ugly-uninvited self, it is after all, at least familiar, well … I know what I must do. Maybe I was thinking of going for a walk, or trying to do something, ever hopeful that I might find a friend, see a sunset (or even have it shine on me, for just a moment), or yes, even “catch” that elusive smile, even from a stranger, that smile that will keep me going for another month. But when the pain strikes, all of that gets put “on hold” as it has been placed so very many, many millions of times before, and I get ready to deal with the savage but familiar pain beast once again. And, like you said, “Grrrrrrrr.”
But at least it’s familiar. And I know what to do. Carry On! (jqt)
Thanks Lily…My oldest son (17) told me the other day mommy ur a fighter.I know u can fight this.After hearing that i know i have to find it deep inside me not to let TN get the best of me.But god i cant lie.Its hard some days.Being a mother working full time once again and living in this pain…Thank god for this group cuz i truely dont know were i would turn to…
Lily said:
john quill said:Wow John, I've never heard it explained as eloquently as this - I hope you don't mind if I quote you sometimes. Marina, you WILL find the strength to endure this. It DOES take forever for the doctors to get us to a place where the pain is bearable. Heck, it took over a year for me to even get diagnosed. But you will get through this. Please just keep coming here and telling us how it is, You will find that we all understand. I know that that sometimes doesn't count for much, when you are suffering so bad, but you will never suffer alone.“But when a severe episode of pain comes, I am so well ultra-conditioned, like a dog that bows its head in awful, awkward submission because it lives, or rather it exists, with an owner who frequently torments and beats it. I know what to do”(jqt)
Hugs,
Lily