It seems we are all living the same story with this affliction, we do what we have to to keep our jobs and get through the day but I have to admit before this happened to me I would never have understood what anyone with this was going through either. I try to explain it and I have started using the spoon story which I just love, and my friends are very sympathetic and my husband is 100% supportive so I feel very fortunate in that respect. I'm now struggling with my job situation though, I'm required to take a poly and I have tried to explain that in addition to the TN I have neck and back problems from a previous car accident and cant imagine how I can sit in a hard chair with no lumbar support perfectly still with stable blood pressure and pass this test. I have to get up and down from my chair in every meeting because if it doesnt have the right back support I'm just miserable, and that pain triggers the TN, sometimes causing me to have to leave the room and deal with the head pain. I have already been accused of having something to hide because I have expressed my concern for failing the poly. Just because I am standing there and "look" fine, they dont get that I have to work very hard all day long to manage my stress levels since any stress at all is a pain trigger and will induce severe head pain. So I hear you all and feel your frustrations in the workplace, we want so very hard to be professional and not let our health affect our work but since getting TN a year ago it is the biggest challenge of my life just to get through each day.
By the way, I take no meds since they all make me terribly ill but I have found much relief from botox for migraines, I've been getting treatments every 3 months and now started every 2 months since it has started to lose its effectiveness and that seems to be working better. My TN is in the forehead and top of my head so I would recommend giving it a try for anyone with the upper trigeminal pain. It isnt perfect, I still have a headache 24/7 and occasional migraine flares but I can function as long as I manage the stress. I'm also working with a compound pharmacy to get the right formula in a topical cream I can rub on my forehead, I'll write more if it ever works, we are on the third formula as of today. I had heard of this from someone in this forum, so thanks for that!
Hoping this new year we all find better solutions and understanding.
johnr64: I also am on tegratol and gabapentan, always increasing the dose.Then took baclafin. All that did was make me drowsey. I saw on the internet to take vitamin b 12. It's funny, but I don't know if it's the b 12 or the baclafin, but i've been pain free for a year. I had to cut back on the baclafin to half a pill because I couldn't stand being drowsey.
kerry said:
Girl, I feel you 100% I contemplated suicide multiple times. I found God or God found me. He literally saved me. I also found Reiki. Do you have atypical TN? LIdocaine shots have helped with my pain the most, but none of those anti-seizure drugs helped at all, they just made me loopy. Do you know what caused it? Take care.
Stephanie said:
I am mostly frustrated. I can say the first 9 months after all of this happened I didn't want to live. I am 100% better than I was. You know the 5 stages of grief? Well I'm just making my way through them lol.
I haven't had much luck with other drugs. I have been on gabapentin and just keep increasing it. I feel like I have tried all of the drugs there are. I love this site because I can see different drugs and things people have done. I must say I do find myself a little jealous when people are talking about being pain free. I'm happy for them just wish I could find that.
Hi Stephanie- I can relate to you and all those that replied. Having this is like living a secret double life sometimes. I don’t tell everyone about my ATN because let’s be honest, most don’t care. I don’t mean to sound cynical but many have burdens they don’t share.
I am married with 3 active teenage sons. After being diagnosed 4 years ago, I tried so many different ways to stop the pain (which for me is more a constant medium-high level pain that lasts for hours). Right now, I am doing ok with a med cocktail. I try to get rest, keep ice packs on the ready and try to occupy my mind elsewhere when the pain begins. For me, I WILL NOT LET ATN TAKE MY LIFE! I get frustrated and cry a lot but then I call my sister.
In addition to the meds, ice, occupying my mind on something else, I have 1 person I can call and complain to when needed. My sister let’s me just vent. Then she vents about her life too. Find a person. Good luck and God bless.
I'm in remission right now. i live with atypical tn and have been fortunate enough to keep it under control with drugs. i have had to cut back all of my social life. i sat on a board and was asked to leave because i didn't make enough meetings. while i understood the need for the non profit to have quorum at meetings it was heart breaking. i cannot tolerate large groups so i have taken to hanging out at home alot. and only having one person at a time come for a visit. sometimes two. also i have taken up hobbies like crocheting, knitting. i have reconnected to painting. i live a life of a recluse most of the time. im not unhappy at all if it takes this kind of life to keep the pain at neutral then so be it. simple is good. maybe i made myself into a more gregarious person than i was meant to be. now i have a smaller number of people and activities but each one of them is a blessing and deeply appreciated by me. so yes tn i think demands you to make changes to your life....change can be scary but ultimately its quality over quantity that can be the most rewarding...especially getting the time to truly get to know yourself.
I almost feel guilty for posting here but hope that my story will offer a little help or hope to someone. I developed TN about a year ago after being a severe migraine sufferer since my late teens. Believe me when I say I was begging just to get my migraines back, those I could control. I was put on Tegretol and ever increasing doses of gabapentin along with Department-Kote. I felt like a zombie and was still getting no relief. Throughout all this I was still holding down a full-time job. I knew my work was being affected as I couldn’t focus due to the pain and the meds. I was extremely fortunate to find a neurologist well versed in TN. After the medication trials, he sent me to a neurosurgeon. He was absolutely a God send. On October 9th I underwent a 4 hour MVD. He found multiple vessels coiled around the trigeminal nerve. However, the surgery was a huge success! I have been completely pain free since. I had some headache associated with the surgery itself but that has resolved as well. I am also no longer on any of the meds. I, too, was alone with no support with the exception of my youngest daughter who is an angel on earth. She is also a nurse so understood what TN was all about. However, she lives two hours away but was here to drive me to every appointment and be with me during surgery and the first week I was out of the hospital. My New Year’s prayer for all of you is to find the relief you so desperately seek. Love you all and pray for all of you daily.
Sending prayers and positive vibes your way for your upcoming surgery. TN is a difficult one to explain the pain. So is my GN. Saying that it's like the worst earache ever sometimes helps but not everyone has had one or one that they can remember. I get ice pick jabs 24/7 , they haven't changed since I had the shingles 3 years ago. If anyone has ever had shingles then I can explain the deep nerve pain that way but it's hard no matter what you're trying to explain.
I hope that when you're recovered from surgery that you will be explaining by saying" I had it, it was awful, now I'm healed and on my way to getting back all that was robbed from me"
Although I have TN, it is a minimal problem except in very cold or windy weather, which we have a lot in Cleveland. Since I retired, I have more control of when I go out or when I stay in, so that helps, and I now know to bundle up and always keep a hat in the car. What I do have is common variable immune deficiency, which causes me to cancel many social outings. In the immune deficiency world, most of us have that problem, and it is difficult because, as with TN, we don't look sick. I am still educating friends, and my close family members, except my husband, don't get it. Sometimes I think they believe I'm faking. All you can do is keep educating your friends and perhaps give then articles about TN or websites to visit. I am fortunate that I have many long-term friends who are wonderful at understanding my sometimes last-minute cancellations. When you set up a social meeting, you might tell them up front that you will try your best to be there but can't predict when your TN symptoms will kick in, and then tell them what happens to you when you have TN pain. I am so sorry that you have to go through this!
Hi Laurel - I was just wondering, is your GN the result of post-herpetic neuralgia following the shingles? Presumably your shingles was in the head area?
shinglesdidit said:
Sending prayers and positive vibes your way for your upcoming surgery. TN is a difficult one to explain the pain. So is my GN. Saying that it's like the worst earache ever sometimes helps but not everyone has had one or one that they can remember. I get ice pick jabs 24/7 , they haven't changed since I had the shingles 3 years ago. If anyone has ever had shingles then I can explain the deep nerve pain that way but it's hard no matter what you're trying to explain.
I hope that when you're recovered from surgery that you will be explaining by saying" I had it, it was awful, now I'm healed and on my way to getting back all that was robbed from me"
Well said! I've certainly had time to get to truly know myself. Before this happened 18 months ago I was rushing around like most people, always busy, always stressed. Didn't have the time to think too much but now I l try to look forward to simple things like planting an herb garden this coming spring, going for walks with my dog when I can, reading a good book. I guess if there is a bright side to this nightmare that would probably be mine. I've had to cancel out on many things, sometimes at the last minute and I know I've probably annoyed people but that's a sad fact I've had to come to terms with. You DO look normal, although one person said to me a few months ago that my face was looking a little lopsided - not exactly the best compliment to receive but oh well, what can you do ....
Jane Larsen said:
I'm in remission right now. i live with atypical tn and have been fortunate enough to keep it under control with drugs. i have had to cut back all of my social life. i sat on a board and was asked to leave because i didn't make enough meetings. while i understood the need for the non profit to have quorum at meetings it was heart breaking. i cannot tolerate large groups so i have taken to hanging out at home alot. and only having one person at a time come for a visit. sometimes two. also i have taken up hobbies like crocheting, knitting. i have reconnected to painting. i live a life of a recluse most of the time. im not unhappy at all if it takes this kind of life to keep the pain at neutral then so be it. simple is good. maybe i made myself into a more gregarious person than i was meant to be. now i have a smaller number of people and activities but each one of them is a blessing and deeply appreciated by me. so yes tn i think demands you to make changes to your life....change can be scary but ultimately its quality over quantity that can be the most rewarding...especially getting the time to truly get to know yourself.
I found this article and would like to share it to all of you. I find myself going back and reading it again. This might help others understand what we are going through and educate them a little about what it is and how to deal with it. It is caring fpr someone with TN.
Hi Stephanie, I have ATN and have had it for several years now. Yes it qualifies everything I your life. But it is your life and accepting it and endorsing it helps. This does not mean roll over and die, or give up hope. What I have had to let go of was my (previous) life and accept that this is the new normal. It makes relationships very hard to maintain, jobs difficult, and just getting out of bed hard. Every day is ground hog day. So I live one day at a time, in daily compartments. And at night when I go to bed I lay down and think "Thank god that's over". I don't want to sound negative... I'm quite an up person but hey the reality is I have just about NO quality of life. Ha at least I'm not alone eh???? ! Some one else understands too. We sufferers are quite an exclusive club!!
Social life is very difficult. SO I do what I can when I can, trying to avoid any compromise. A bit selfish? Well if you knew how crap most of my waking hours were you'd understand!! ( I'm sure you do). Welcome to your new reality friend!
My case is a bit on the rare side. My case of Shingles started with the horrific earache I now live with...the actual rash area was on my left thigh with a few areas of one or two blisters all on the left side(hand, arm) but not a shingles one in , or around my ear or anywhere else on my face. My Neurosurgeon says it's not common but shingles can follow nerves deep below the skin or skull as it was. My case was very weird and very bad and I was in so much pain from both the ear and the rash and it went on for months. When the rash was gone the earache remained and it took me over a year to get any help other than some head shaking and some norco. It was my ENT that diagnosed me with PHN and then I finally started getting places with Doctors. Dove said:
Hi Laurel - I was just wondering, is your GN the result of post-herpetic neuralgia following the shingles? Presumably your shingles was in the head area?
shinglesdidit said:
Sending prayers and positive vibes your way for your upcoming surgery. TN is a difficult one to explain the pain. So is my GN. Saying that it's like the worst earache ever sometimes helps but not everyone has had one or one that they can remember. I get ice pick jabs 24/7 , they haven't changed since I had the shingles 3 years ago. If anyone has ever had shingles then I can explain the deep nerve pain that way but it's hard no matter what you're trying to explain.
I hope that when you're recovered from surgery that you will be explaining by saying" I had it, it was awful, now I'm healed and on my way to getting back all that was robbed from me"
Kerry I fell 3 yrs ago and broke my jaw in 3 places. After being wired shut for 12 wks the pain just got worse and never went away. In feb I’m getting bilateral joint replacement on my jaw that’s how bad my break was. So I do know what caused mine but I also know it will never get better because of the damage done.
I wanted to get into reiki but… I have awful anxiety now so I have little mini panic attacks to go new places. I wasn’t like that before I was so out going lived fearlessly. I was a firefighter/medic loved my job that is now gone. My life has flipped upside down from one night and a fall. I had PTSD after the fall. God found me … I spend my days crying and crying. My daughters had to live with a mom that was no longer the mom they knew.
I’m in a much better place since God found me.
Thanks you everyone for sharing your stories it makes me feel so much better. I know that sounds wrong and I’m sorry everyone is going through this but it’s nice to know your not alone. Until I found this site I felt so alone no one understands.
This morning I suddenly remembered a recent incident that happened to me that is so typical of what people don't see.
There's a restaurant my husband and I have been going to for years, usually about once a month. Eating for me, and probably for many of us, has become an adventure since the TN started. I always say a quick prayer now before the first mouthful of food - please let me be able to eat this meal without pain. Anyway, a few weeks ago I met a friend of mine at the same restaurant for dinner. When the server came over to take our order she looked at me and suddenly said "Would you like me to put your order in right away so it comes out first - I remember you're the woman that eats so slowly". I was mortified. Yeah ok, how about we swap heads for a day and then you might understand ..... I know the server didn't mean it unkindly but still ..... if she only knew why ....
I refused to go out to eat for over a year when all this started. I didn't know yet what was causing the pain and eating out in public quickly became something I couldn't handle. I've only ventured out again recently, I feel that on the "good" days I should try to do normal stuff and at least I know what foods to avoid now - before I would order a steak and then wonder why trying to chew it had become an impossible feat. But - the bottom line is you LOOK normal.
Replied earlier, but have been thinking about this thread...is it a blessing or a curse no one can see this. Why I say that is my husband is now in a wheelchair with an amputated leg and wow has it effected the way people interact with him. They get nervous and have had so many say "I don't know what to say to him". He is a big man and was an on site construction manager, big tough guy, grin! That is the few friends that have been there somewhat. I show my Saint Bernards (they are my saving grace, love em, they are our kids), and we see a lot of people just at the shows. During the past year my hubby has been home and able to attend with us I have noticed we don't see many that used to come see us. And sometimes on pity party days I just feel like what a pitiful couple between my TN and all he has going, we are way too young for all this, but then I pick myself back up and just believe God is leading us down a path we may not understand, but truth be said it is our path. Between suddenly becoming caretaker and TN I have found the emotions are unlike anything I have ever felt and I spend time reading, writing and even seeing a therapist once a month just to help me sort out what I am feeling and like was said getting to know me. I have had to accept this is truly our new normal, well I am still in the process of acceptance with it all. Little things can get me, saw a couple walking their dog together, brought me to tears, then TN pain started, so silly, but I miss doing things with my man. We all have our struggles and a different story, I wish none of us had to be here, but since we do I truly feel blessed to have found this group and feel each and everyone one of you is my friend and it helps that lonely feeling!!!
Having TN has brought me, to not treating anyone any differently, because of disabilities or illness. It was a little hard for me before, but I tried willingly. Now I don't even think about it. Everyone is a person just like me and we are all the same on the inside. I feel like a better person now. :-D
I agree with you Jane Larsen taking the time to get to know yourself.. I've definitely done that.. and Othellocop I'm sorry for what happened at your job. Tain't no kinda right. I am glad you are at peace with it tho... I kind of had a similar experience. They didn't believe me.Put me thru much grievance when I was having GKRS trying to get rid of the pain. So I eventually left. I wait tables now and hostess at a restaurant and do okay with that. :)
Yes I understand. My husband and I used to go to a football game every season.We are season ticket holders.Now we do not go to games beacouse of my TN.I can't enjoy the the game. I can't scream and holer at the game. So we stay home and sell the tickets. Hoping one day we can go back to the stadium and to see the game.
It’s funny, while I am in the store at the check-out with my wife when a pain hits. I yelp and bend forward holding my head. The cashier looked on in horror and my wife responded “Dont worry, he does that all the time.
Normally touching pains don’t hurt me but breezes…boo. So I’ve taken to wearing a cloth mask and ski goggles to protect my eyes. Some people ask if I am allergic to this sun or some such. I shake their hand and say no” I’ve got leprasy and it shouldn’t be contagious any more. Banks and jewelry stores look nervous when I walk by. Children naturally look and I lift the mask to show my white beard and say "Shhhh…I’m Santa Claus. Youv’e gotta keep a sense of humor.
Like most of you my faith has carried me. My family sees it and I suppose it shows as a testimony to the blessings during the dark moments.