I need to hear that I am not "making bad choices". I am fighting my TN on a daily basis. On average I have 20-30 mini shock attacks a day. I do have full blown attacks every couple months. These last anywhere from 3 days to 2 weeks. I had a terrible reaction to Gabapentine, so I take 800mg of Tegretol a day. The pain causes me to not be able to move the right side of my face. Often it will cause my eye so much pain I can't look higher than my nose. I am too scared to have any surgeries on my face, and I am too stubborn to call into work. My husband gets frustrated because I go to work regardless of the pain, and refuse to go to the ER. I am so frustrated with doctors...what can they really do if I go to the ER...nothing! Why bother?!?! If I stay home from work I feel as though I am letting TN win.
This is where I need advice from you all: Am I making poor choices? I don't want the TN to run my life, but then again I don't want to create bigger problems for myself in the long run.
I try to always bring my own sunshine and I keep my sorrows hidden from those around me...so I NEED YOU!!!
I don't think you are making poor choices. I've had a successful MVD now but I made the same choices previously that you did. I rarely missed work and never went to the ER. I have TN 2 so I can't compare my pain to everyone elses on here but this worked for me. Medication took care of most of my pain although I had my share of rough days too. The medication really messed with my thinking abilities and coordination. I had to reduce my responsibilities at work but I was lucky enough to have a supervisor that allowed that. I think these are choices each person would need to make themselves. We all know TN varies so much from person to person, there is no way someone could say whether you should go to work or go to the ER except for you.
I was also afraid of a day when I would feel even worse and then if my sick leave was all used up - what would I do? I also always planned on trying MVD if I found a surgeon that agreed with that decision so I wanted to save my sick leave for that if at all possible.
I dont think you are making poor choices either. I suffered with TN pain for 8 years. I would get the electric shocks every 2-3 seconds and would last anywhere from 3 weeks to 3 months. I was 25 yrs old when my TN pain started and 33 when I had my MVD surgery. During those 8 years I dont think I missed a days work due to TN and never once visited the ER. I held a management position in Finance , had 2 kids and moved my family to another state in that time. I think what I am saying is that I just couldnt let it control my life and seems that you feel the same way. I took tegretol till I was at the max levels and it was like taking jelly beans it had no impact on the pain. I finally got a diagnosed after 8 yrs of searching for answers and had MVD surgery a month later. You need to have a top flight neurosurgeon who has extensive experience with TN....You need to discuss your options with that neurosurgeon. Do not be afraid of the surgery the TN pain is so much more severe then the surgery discomfort. You will feel so much better about things with the right neurosurgeon who knows all there is to know about TN...Take control and dont accept that you have to live with this pain because you dont. Good Luck
There are no poor choices, only choices that you can make. I agree, I try to be tough as can be, but there are days I have to surrender to the pain and yes, I hate it, but I try to never feel TN won( although that is hard to do) it is just what I have and there are bad days, but there are also good days when the Gabapentin takes care of the pain. It sounds like your hubby is most understanding and that is great! TN is truly an everyday battle we face and like you I try to always keep a good front, but being full time care taker to my disabled husband is sometimes rough, but he too understands. So you need to do what is best for you, hard as choices are, you are number one and know what would be best for you. Dr's do get frustrating, the whole TN is frustrating, but here you can just be you and no front needed! I too have opted against surgery, so many success stories, but also so many that did not turn out well, it is a most scary desicion. As long as I have more quality of life days than not I will just stay on med, let alone no insurance anyways. I wish I had a magical answer for you, but as much as I hate the expression, one day at a time. We are human and this pain changes things, so do what is best for you, what you know deep down are the best choices. We can't always have a smile, positive is good, but we have to let ourselves do what is best and you will know that. We are here for you, I will be thinking about you and praying for you.
Here’s my opinion…
You are only making “poor choices” if you are choosing “pain/suffering” over the idea of letting “TN win”…
There is no score card…that I’m aware of…
No one is going to give you a medal for NOT going to the ER to seek relief of horrendous pain.
No one is going to give you a trophy for never having missed a day of work despite high levels of pain.
If you are able to work with your pain then great, that’s awesome!
But if you are working while suffering in pain, then you are only hurting yourself more and probably not doing a great days work either.
That being said only YOU know what you can and cannot do. What choices are best for you…
Although we all have TN, we all experience it differently. We each have different pain thresholds.
I guess what I’m trying to say is, don’t try to be a hero…give yourself permission to take care of YOU.
Unfortunately all any of us can do is make choices at any given time that we think are best at that time. I too seek reassurance and question myself OFTEN…it really sucks. I wish it was different, but truth is…the one thing I know to be true about TN is that is consistently inconsistent!
I encourage you not to hide your sorrows, journal or find someone to talk too…it really does help to talk about it all. TN affects so many aspects of our lives, there’s bound to be many emotional consequences on top of all the physical ones…
We are here for you too…sending you lots of ((( hugs))) , Mimi xx
I am definately struggling with missing time at work. I just got hired at my position in May and I don't want to jepordize my job. I know that technically I can't get let go because of a medical issue....but I definately don't want to test the waters...
Deej said:
I don't think you are making poor choices. I've had a successful MVD now but I made the same choices previously that you did. I rarely missed work and never went to the ER. I have TN 2 so I can't compare my pain to everyone elses on here but this worked for me. Medication took care of most of my pain although I had my share of rough days too. The medication really messed with my thinking abilities and coordination. I had to reduce my responsibilities at work but I was lucky enough to have a supervisor that allowed that. I think these are choices each person would need to make themselves. We all know TN varies so much from person to person, there is no way someone could say whether you should go to work or go to the ER except for you.
I was also afraid of a day when I would feel even worse and then if my sick leave was all used up - what would I do? I also always planned on trying MVD if I found a surgeon that agreed with that decision so I wanted to save my sick leave for that if at all possible.
Thank you Betsy for sharing your story. I get up each day and tell myself what a great day it will be, until something triggers the pain. I am going to go see a neurologist that is listed in the "Doctors" tab above. Hopefully I will have better luck with this Doc! I will try to stay open minded about surgery. I have had the pain so long that I don't know what "normal" feels like anymore.
Betsy Carlson said:
There are no poor choices, only choices that you can make. I agree, I try to be tough as can be, but there are days I have to surrender to the pain and yes, I hate it, but I try to never feel TN won( although that is hard to do) it is just what I have and there are bad days, but there are also good days when the Gabapentin takes care of the pain. It sounds like your hubby is most understanding and that is great! TN is truly an everyday battle we face and like you I try to always keep a good front, but being full time care taker to my disabled husband is sometimes rough, but he too understands. So you need to do what is best for you, hard as choices are, you are number one and know what would be best for you. Dr's do get frustrating, the whole TN is frustrating, but here you can just be you and no front needed! I too have opted against surgery, so many success stories, but also so many that did not turn out well, it is a most scary desicion. As long as I have more quality of life days than not I will just stay on med, let alone no insurance anyways. I wish I had a magical answer for you, but as much as I hate the expression, one day at a time. We are human and this pain changes things, so do what is best for you, what you know deep down are the best choices. We can't always have a smile, positive is good, but we have to let ourselves do what is best and you will know that. We are here for you, I will be thinking about you and praying for you.
You definately have a way with words. At this point I don't know what is good for me. If I had it my way I would be home curled up and not do anything everyday! I am so nervous in anticipation of each attack that laying in bed just seems so safe...but that is no way to live (especially being a mom of 2). Your words do give me strength and I hope to one day find a happy medium.
I know there is no "medal" for not going to the ER, I think it just seems hopeless. Big bills, long hours, and little resolution. Usually no resolution. I would love to journal my thoughts, but that just seems to make me feel worse...purhaps I need a different outlet, like a friend to listen to me (and for me to talk without feeling like "poor me")
However, you're right, I don't care what anyone thinks, I will need to make better choices for myself and my well-being.
Thank you for your thoughts and ((hugs))
Mimi said:
Here's my opinion.... You are only making "poor choices" if you are choosing "pain/suffering" over the idea of letting "TN win"... There is no score card...that I'm aware of... No one is going to give you a medal for NOT going to the ER to seek relief of horrendous pain. No one is going to give you a trophy for never having missed a day of work despite high levels of pain. If you are able to work with your pain then great, that's awesome! But if you are working while suffering in pain, then you are only hurting yourself more and probably not doing a great days work either.
That being said only YOU know what you can and cannot do. What choices are best for you... Although we all have TN, we all experience it differently. We each have different pain thresholds. I guess what I'm trying to say is, don't try to be a hero...give yourself permission to take care of YOU. Unfortunately all any of us can do is make choices at any given time that we think are best at that time. I too seek reassurance and question myself OFTEN...it really sucks. I wish it was different, but truth is....the one thing I know to be true about TN is that is consistently inconsistent! I encourage you not to hide your sorrows, journal or find someone to talk too...it really does help to talk about it all. TN affects so many aspects of our lives, there's bound to be many emotional consequences on top of all the physical ones... We are here for you too..sending you lots of ((( hugs))) , Mimi xx
You have summed up what I feel like in the place I am in my life. I don't have time to take care of me, my family needs me. And those meds...arg! I found a doc in the Doctors tab above and I am hoping I will be able to see this one for more than one visit. I will open my mind up to the idea of surgery.
Thank you!
Ed said:
I dont think you are making poor choices either. I suffered with TN pain for 8 years. I would get the electric shocks every 2-3 seconds and would last anywhere from 3 weeks to 3 months. I was 25 yrs old when my TN pain started and 33 when I had my MVD surgery. During those 8 years I dont think I missed a days work due to TN and never once visited the ER. I held a management position in Finance , had 2 kids and moved my family to another state in that time. I think what I am saying is that I just couldnt let it control my life and seems that you feel the same way. I took tegretol till I was at the max levels and it was like taking jelly beans it had no impact on the pain. I finally got a diagnosed after 8 yrs of searching for answers and had MVD surgery a month later. You need to have a top flight neurosurgeon who has extensive experience with TN....You need to discuss your options with that neurosurgeon. Do not be afraid of the surgery the TN pain is so much more severe then the surgery discomfort. You will feel so much better about things with the right neurosurgeon who knows all there is to know about TN...Take control and dont accept that you have to live with this pain because you dont. Good Luck
I am in the same fear, last attack I didn’t took any meds. Except pain killers that do nothing ! I tried tegretol befor & pain getting wose ! I am master student & pharmacist I need my memory,concentration,thinking & I will loose them all if I start on antiepileptics !
! The only hope for now after 8 months suffering ,2 weeks pain free is to have long remission !
Good luck #1 is to find the best neurosurgeon that you can and you must take care of yourself. Yes your family needs you but they also need you healthy.Dont want to sound harsh but dont use taking care of your family as a reason for not taking care of yourself. There are many ways to treat TN please have an open mind on all treatments and get to that TOP QUALITY EXPERIENCED neurosurgeon ASAP. Knottytree said:
Ed,
You have summed up what I feel like in the place I am in my life. I don't have time to take care of me, my family needs me. And those meds...arg! I found a doc in the Doctors tab above and I am hoping I will be able to see this one for more than one visit. I will open my mind up to the idea of surgery.
Thank you!
Ed said:
I dont think you are making poor choices either. I suffered with TN pain for 8 years. I would get the electric shocks every 2-3 seconds and would last anywhere from 3 weeks to 3 months. I was 25 yrs old when my TN pain started and 33 when I had my MVD surgery. During those 8 years I dont think I missed a days work due to TN and never once visited the ER. I held a management position in Finance , had 2 kids and moved my family to another state in that time. I think what I am saying is that I just couldnt let it control my life and seems that you feel the same way. I took tegretol till I was at the max levels and it was like taking jelly beans it had no impact on the pain. I finally got a diagnosed after 8 yrs of searching for answers and had MVD surgery a month later. You need to have a top flight neurosurgeon who has extensive experience with TN....You need to discuss your options with that neurosurgeon. Do not be afraid of the surgery the TN pain is so much more severe then the surgery discomfort. You will feel so much better about things with the right neurosurgeon who knows all there is to know about TN...Take control and dont accept that you have to live with this pain because you dont. Good Luck
I feel like I should chime in as I am a person who has chosen to go to the ER when attacks are beyond control. I am talking the times when you are on the floor crying in pain. I have gone to the ER twice for this type of pain. They cannot do much, that is true. However, they can give you stronger pain medication than you probably can get at home. I tend to get stuck in pain cycles that get worse and worse and worse until I hit a breaking point of pain when I can't sleep for days because I am in so much pain and all I can do is cry. What the ER has done for me is cut the pain and sort of hit a reset button. After the ER my pain level goes much lower. I don't suggest going to the ER whenever the pain is terrible. Obviously we have to deal with terrible pain constantly. However, there are times when I think it can do some good, and give you a reset. Granted everyone is different, and this might not work for you. I wish you the best of luck in getting control of your pain!
Looking back,i wish i would have gone to the ER.My wife used to beg me to get in the car and let her take me.I just couldn't stand the thought of being in that environment in that pain.Also,the worst of the worst attacks would calm down after a few minutes.But i've read here on the forum of many getting relief at the ER.Mine was so bad the last episode,i think morphine or something similar would have helped me tremendously.Now a big city ER with a long wait sitting in bright light in uncomfortable chairs would be torture.I live in a small town and the er is never like that.Probably the surgery is your best bet.I had another issue that didn't really make that the best decision for me.I had Gamma knife and am now pain free thank god!Will it come back?Who knows.Im just enjoying every day.Good luck!
I do not think you are making poor choices per say, but I do not that untreated typical trigeminal neuralgia will turn into atypical neuralgia and then those breaks that you get, if even minute, will no longer be breaks. In all due respect and honesty, I cannot and will not recommend an MVD because of what happened to me. But there are many other forms of treatment out there, even holistic and alternative that people have prayed by. There is a slew of chiropractors that claim they can cure trigeminal neuralgia. I went to one of "these" He twisted up this cork screw looking thing placed it against my face and let it fly. It about knocked me off the table. The idiot hit me dead square in my pain with this thing. Yeah no.... not THAT type of chiropractor, but there are some. IF you have a tongue ring, GET IT OUT. The tongue has a trigger point for trigeminal. There are actual medical studies ongoing now on using tongue rings and trigeminal developing. Etc.
Look around, see what you can find. It may be time to proceed with something..... but like I said I cannot suggest the MVD. I just cant.