Huge ((((( hugs ))))) Crissy! I’m so sorry you’re having to deal with this on top of everything else…
You too Jimmy!
It’s so unfair.
Just letting you both know I am here for you whenever you need to vent, share or whatever! Thinking of you, Mimi
I have been diagnosed with Great auditory nerve neuralgia.Please tell me how to handle this. A doctor has advised a shot in my head… can anyone guide me
Crissy i feel so much for you. My husband thought i was making a mountain out of a molehill until he came with me for my Neuro appointment. The Neuro made a point of informing my husband how painfull the condition was at the time I was annoyed he spend more time talking to my husband rather then me his patient! Now I am grateful as my husband then took it on board and accepted how painful it is by how the Neuro explained it all to him. Maybe a proffesional explaining it to your husband may help? xx
I have been married twice over the years and both of my husbands thought it was a fake disease that I used for attention because they saw no signs of the disease. It was as if your body didn't get covered by something you could see then it must be all in my head. As you can imagine both of those men are now ex's. I totally understand your problem and I hope it will work out for you with your husband. I am sure some men as not so blind to a life time condition. Bless you and I'll add you to my prayers. Know for sure you are not alone.
Gunjan, I'm not a doctor. Is the doctor a general practitioner? Or a specialist in head, facial, or ear pains? I would get the advice of a good neuro surgeon or a doctor that specializes in this for his opinion.
I am so sorry you are having such a rough go of it. But please know that you are NOT ALONE.....we all hate this disease! It is even harder when you do not have a good support system. My marriage ended in divorce because of it. It's hard to make someone understand how much you hurt when you look like you are fine. Would your husband be willing to read about the disease (there are some great reommendations on this site) that has taken over your life? It may help him to develop some understanding and be more helpful to you. Although it did not help mine (he used my pain issues as an excuse for his excessive drinking..... telling me that I drove him to it.... yeah, right), but it may help yours to gain some insight into thisall-too-real disease. I hope you can find some support within your family or friends...and that you can find a treatment that gives you your life back. Stay strong and know that we truly understand.
What I did with my family and at work, I printed off the discription of TN from the web and had them read it. I told them that if I told them I had cancer they would understand it, so here is what I have either read it and understand or don't read it but don't say anything cause you don't understand. This really made a difference in the support I have received from my family and at work.
Not Again, you are right. On target. I somewhat doubt people reading about it will do the trick. But its what I would suggest too. Or, maybe she could tell him about the lady I once read about. Her husband went looking for in the middle of the night when he realized she wasn't in bed. Found her out in the garage trying to pull her teeth out with pliers. Or the woman I read about that sat up all night in bed with a glass of ice water waiting for the next onslaught. There are many others. In "my" case, when I first got it back in '98 it was in my teeth and gums. I thought about the lady with the ice water a lot !!!....and wondered if that would subside the pain in my teeth equal to a dentist's drill with no anesthesia. I had to reach down REAL DEEP to muster enough guts to give that a try. One thing you DON'T do with a bad tooth is run ICE WATER by it. But, I figured I'd give it one try. It was beyond belief how much strength I had to muster to do that. I would equate it to an officer in combat giving you an order to charge an open hill with machine gun fire aimed at you. Hard to do !! But I did try it. Lo and behold....it took away the pain immediately. I am not recommending that to others, but it did work for me until I had professional neuro help. I don't understand it, but it worked. Temporary of course, but it worked.
Maybe the husband could read this. When asked by people how bad it hurt at the beginning I would tell them "imagine somebody has a lady's hat pin against your gums and driving it into your gums with a hammer. When it gets the point down into the root of your teeth they hook up a lamp cord to the hat pin and electrocute you. That's how bad it was. Or, he can read this. When I moved to Birmingham and got a new dentist he asked me that same question in front of his new young assistant, whom he was giving OTJ training. I told him "doctor, its so bad you would kick your momma and spit on the flag for relief". He turned to her and said "now that's a description of Trigeminal Neuralgia".
I am so sorry that many of you are going through the same thing. My heart is truly broken. I ran out of my carbamazepine yesterday and asked him to please pick it up for me, well he waited till the pharmacy closed to go. We had a huge snow storm here in Chicago and I had too shovel my car out of the snow and try to keep my scarf on at the same time. Because I’m terrified that I’ll have an attack without my meds. Needles to say with all that wind blowing in my face while shoveling, I had an attack. I’m starting to hate him. I feel like I was just arm candy to him and now that the party’s over he wants nothing to do with me. Even more so, he get annoyed with me at a drop of a hat. I’ve been sleeping on the couch to make the arguments less frequent because when we do argue he mocks me for saying the wrong word or forgetting a word. I have no where to go. I’m stuck. I just feel like crying all the time. This is no life. I use to be strong. Really tough, now I’m a fragile pathetic women. When will it get better? How can I get a job when I can’t remember simple math. I can’t leave him without a job. I hate my life.
Hi Crissy, This makes me so sad for you. No one should have to suffer pain feeling alone and unsupported. TN drains a person physically as well as emotionally and to have a partner think you're faking it .... and to be asked to stop talking about it? I hope you have some other family and/or friends close by that you can turn to. I for one HAVE to talk about it sometimes. I asked my husband to read about it when I was diagnosed, I hoped that would help him better understand it, and it did. Maybe having your husband read about it as others on this site have suggested might help. I know we "look" normal but I look anything but normal in the middle of an attack. My husband would be the first one to back me up on that, he's seen it too many times. Do you have an understanding neurologist? I wonder if they would be open to setting up a meeting to explain it to your husband? Would he accept it then? As many have already said, you aren't alone. Wishing you love and support from your husband very soon.
I feel your pain, Crissy, everyone looks at me and says, but you look "OK". I cry when I am in so much pain and they say "oh, whats wrong?" They just don't get it. No one does. I have given up trying to explain. I, too, have stopped going out to eat because of the pain and insecurity of not knowing if I have food in my teeth or on my face. Just stop hiding your pain and let them know you hurt. Let everyone who is close to you know that, Yes,I am feeling badly, I hurt and it does not show.
i feel for you, Crissy. i have gotten the disbelief from my brother. it has certainly bothered me, in fact, i find it infuriating. at least, i don’t have to live with him.
some people come up with a dubious panacea and i am suppose to bibbety bobbety boo the money and run right out. if i don’t, of course, i am not doing what i am “supposed” to do.
people are use to there being a cure. since they cannot see the nerve etc that puts your veracity in doubt.
but could i make my story up? could we?
it was only here that i read that another lady could not bear to go to the grocery store because the noise set off the pain.
but it says more about the person than it does about you.
Ktznanna, I have food stick to my lips or near my mouth too, and don't even know it. I am constantly wiping my mouth with a napkin when I eat , whether out or at home. She points it out to me with a motion to her mouth, but does she "get it". No not really. Instead she gives this hidden sigh look or...what I call the p***** off look about her. Finally, yesterday I held back no more and told her she had that look on her face and I knew how she felt. My numbness is from the CK treatment I had 4 yrs ago. It makes you feel isolated when you've done nothing wrong. I have told all my friends about the numbness and why its like that, so they'll know I'm not senile or some kind of idiot. They know. They understand. But they don't have to live with it like we do, or a spouse does.
oh, btw, if he won’t drive you to the ER, take a cab! LOL!
Crissy, I know. This is so hard. I've had that conversation exactly: how is it you can sometimes do something, at annother time cannot??!? IT looks weird to someone outside our bodies.at one otime, I even noticed my SO giving 'dirty looks' to my meds as he passed the dresser where they sat.
I always felt : this is as hard on someone who is with a person w/ a chronic illness or pain, as it is on the patient..so I used to spend a lot of effort form day to day finding ways to maek sure it's not 'all about me'. That was fuitle, in actual fact, becsaeu the condition seems to run your life.. as you say, loss of social life, loss of job of career for some of us; so many aspects of life affected. HE will have ot realize that in reality this cobdition0 'behaves' much as other conditions w/ which he may be more familiar, or may be able to 'see' a bit better.. adn it is up adn down!!!! IT is NOT a steady state. an aqusintance, just hearing my description of this pain for the first time, said: " OH, so it's like being in a brainwashing situation ! Just like it, virutaly, because you never know when it will strike.. " How apt!! --so true, like you never know when they'll come in to torture you.... Bluntly, the seeming randomness makes it so crazy -making. Then, there are the known triggers.
what I do these days is I assume that people will NOT 'get it'. I find the people closest ( e.g., family) are the most likely ones to resist changing their expectations. Like anyone, we can only do what we can do.
I''m so sorry. the one person you most want support from has a difficult job: to adjust. But he will have to ; and, if it takes a reminder once in a while to say: at the moment, I cannot do that, so be it.
I am so sorry to hear what you are going through. Unfortunately no one, other then a fellow Tn sufferer, can have any idea what it is that you are going through. Like everyone says our illness is not visible to the eye and we all look fine but there isnt another pain on earth to compare to the TN pain. I am sorry but if someone truly loves someone they are there to support them. I was blessed that my wife , of only 2 years at the time, stood by me for 8 years till I finally got a diagnosis and a cure through MVD. She was relentless in her efforts to help me find the answer when I had all but given up. For that and other things I love her for life. You deserve the same treatment and what he is doing is cruel and doesnt help your situation at all.I wish there was an answer fo you but unfortunately he isnt the answer. No offense but what an idiot..
that exactly what my co workers and my place of employment said you are not faking this it is real as rain
and it is not easy to find a cure.under doctors permission I used a natural medication called "nerve fix " vitamin would sells it contains belladonna shows up on a Department of transportion drug test
I have no medical training, but can diagnose a fake spouse when I see one. Get him to talk to his doctor to find a counsellor, so that he can understand why he is being a shit. Build your life around people who see what is real, and not just what suits them. Life's too short, and he needs to figure out what his values are. If you do not feature high in these values, then it's probably time to reassess your future. As I say, I'm not a doctor
I wish to God this was a fake disease. I would much rather be dealing with a mental problem at this point. My wife never came out and said it but she didn’t understand it at first either. After a few nasty spasms and when I finally got to one of my lowest points (banging my head on the bedroom floor) it sunk in and she has been very supportive. The biggest problem she has is she doesn’t know what to do, how she can help. It’s a hard position to be in but hubby needs to learn to support you no matter what.