I hate this disease! Not only has it took my social life, my mind and my ability to work, now my husband told me that I have a fake disease! I just starred at him with tears running down my face. He doesn’t understand why I’m able to some thing and not others. He thinks I’m faking. I’m so heartbroken. I have no support. How do I now turn to him to drive me to the hospital when I need it? How do I ever look at him the same? If only he could feel what I feel just once. Nobody understands. I feel so alone. I was asked to stop talking about it. How do I do that when it controls my entire life? Going out, eating, sleeping, drinking! Trying to be strong but it’s exhausting.
I am so sorry you are experiencing this. I too have a uncaring, not understanding husband. It is very difficult to deal with emotionally. I am not sure I can help you. In may case, my husband actually told surgeon that 'she is delusional ' and 'my life has been ruined for the past year' ----nice guy - right. Needless to say, we are the road to divorce. My friends are supportive which helps tremendously. Your husband thinking this disease is fake is unbelievable. The problem is, no one sees us as ill --they can't see bleeding, vomiting, inability to take a breath. The unknown and the unseen, is difficult to deal with. Know you have support (hopefully from friends/family). I wish you well.
Crissy, I'm sitting here trying not to cry as I read this. Pain doesn't show on the outside. There are lots of medical info that he can be given to read, if he's willing. Wiki has an easy to read layman's explanation for starters.
Hang in there - WE KNOW exactly what you're dealing with. It ain't pretty.
hugs
Tina
I can empathize with you. I ended up retiring early, leaving behind a boss that questioned if I “really” had pains. Do these people ever stop to think that you are seeing neurologists who have seen it before and can sort out a fakir real quickly.
There is no way a person can fake that sudden sharp jerk, wince, yelp or shudder when a pain hits. It can strike in the middle of a word from out of nowhere.
When I was having these same issues with my boss I wished I had a leg removed or some common thing like cancer so he would finally understand.
I am so sorry your one support system that should always be there is your first to fail. You have family here who love and support and BELIEVE you. You can always come her. I can’t offer marital advise but, we do have a listening ear and a empathetic, caring heart. Hang in there.
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I’m so sorry you are going through this… No one will ever know our pain no one will never know the mental side effects to this disease I been right where u are and still going through things where I have no support… I commend anyone who can stay strong with this disease… Keep the faith and find ways to get through this bc it will break you down if u don’t… I know all about having difficulties,sleeping,eating ,brushing ,social life ,etc it’s the biggest challenge I have had to encounter. There are good days and bad days… I know all about the husband not believing our pain… Its the most hurtful thing to deal with… The times I had to go to dr or hospital knowing he was tired and frustrated saying he have had a tooth ache before how bad can it be… It was unbelievable of his mindset someone that supposed to love me so much… The pain is beyond a tooth ache… People saying if I don’t think about it the pain want hurt so bad if I don’t talk about it I will get better… It’s rediculous bc no one understands what we truly have and still going through… I encourage you to stay strong… We got each other and can support each other… I’m definetly here if you ever want to talk bc I know exactly what u going through please keep the faith and stay strong and hang in there
My heart aches for you! You have support here. But it IS so important for our loved ones to understand, at the least, what is happening. Can he go to Dr. Appts with you, in an effort to put something tangible to your pain? There is an amazing book, I’ve recommended it to forum friends, and it helped my mom and hubby. My dad still cant talk about the surgery, just can’t deal with the painful reality if this. The book is “Striking Back, a TN Handbook” one if the authors is Dr. Ken Casey. it’s written well, can read only parts that apply, and there is a family/caregiver section too. PS- the author turned out to be my Neurosurgen. Brilliant, compassionate, brilliant, amazing. Keep posting, stay strong for yourself. As hard as it is for us to deal with this, often our loved ones have a harder time watching us in pain. Wishing you well-- Tiffanie
I feel the same way Crissy. My husband is usually extremely understanding, but cannot wrap his head around what this pain feels like. At work I have some pretty amazing pain free days, so coworkers don't understand when I call up sick, thinking you were just fine yesterday. It is sooo upsetting, but honestly I can relate to their not understanding what we are going through. Just think about it "shocking pain going through the right side of my face"?? Wish I had someone who lived close that I could meet up with to talk to. Even the different doctors I have seen say that they basically have a handful of patients with this, so really I have to wonder how they even know how painful and debilitating this disease is. At least we have this site to help us out
I also understand just how you feel. My husband got so frustrasted with me crying and talking about my GPN all the time. He told me not to talk or think about it and just maybe I'll feel better. I was told it's just a sore throat how bad could that feel. It got so bad we ended up in couples counsiling. You are Not alone Crissy, you have all of us to vent and rant to. I am so thankful for this group and all the people here. It helps to vent here,we all listen to you. Saying prayers for us all to have pain free days!!
Dear Crissy, I'm sorry that you are going through this. I think it's very common among friends and family. You might need counseling for yourself. I think the suggestions here are very good. Striking Back is a great book and Ken Casey is a top surgeon. Even people who support us do not understand, even if they try. It's all very frustrating to be told it's fake. I've been told well you look pretty, I've a low pain tolerance by a doctor and the lists go on and on. As I'm sure it does for everyone. Someone suggested meditating and breathing during pain episodes or panic attacks. I thought it was silly but it does actually help to remember to breathe. This is a good support system but you have to believe in yourself and stay strong. It takes a lot of energy to keep searching for doctors and people who can and will help you. Don't give up!! Try to find a Doctor to help you with medication. ER doctors do not help and only control the pain for a short period. My ER doctors said once I had a sinus infection and once I had a heart problem. Bless them they just don't know what this TN is. Kepp trying.
Feeling alone puts you in a place with a lot of others that have TN. I can relate to that. Oh a relative may ask "how's your face recently"?....as one would about a nagging back. My wife NEVER asks, and frankly is NEVER concerned. I finally told her "no one knows what I go through all the time. I'm expected to just sit and keep my mouth shut". Alone?? You bet. Later it produces anger at those who frankly could care less because its not a disorder or disease they can see. And , to boot, some days you may be just fine, and some days are awful. And then there are those days in between when you maintain with meds, and if it weren't for them , you'd be having another bad day of invisible pain with no fever, no congestion, no throwing up....nothing. Just unbearable pain. Yet to people like your husband and my wife...its what's the big deal? Get over it. I frankly have gotten to the point I If will no longer try to work with it to make things more compatible. Why should I? I've been doing that for 15 years? And she hasn't. If I'm having a bad day, by golly I'm having a bad day. Believe or not. That's your problem. And my brother?? Forget it. He has never asked even once after 15 years of this. Crissy, I understand fully how you feel.
My husband is the same way. When I first started having symptoms I thought maybe it was caused by taking Prilosec for my acid reflux. I had read patients' comments on Prilosec and they included tooth/jaw pain, head zings, facial pains, etc. I had my first neurology appt. on Dec 20 and was told everything was fine and if I had TN, it would be a constant pain on one side of my face. Well, my symptoms are on both sides.
I went back to my primary care doctor a few weeks later because I was still having the pains. He said to get a second opinion from another neurologist and if there wasn't a diagnosis, I should think about mental counseling!
When I complain about my pain to my husband, he tells me that one neurologist already told me I'm fine and that I don't have TN. So, my husband still thinks it's the Prilosec or that I just want attention!
I'm very angry and frustrated right now. I have siblings who believe and support me, thank goodness. You are NOT alone and I feel for you.
Minimizing pain is unacceptable by anyone!!!! My own mother doubts my pain at times, it took the MVD surgery to convince her that possibly something may actually be wrong!! I still have chronic pain from a yet to be diagnosed disorder , and I still get people telling me that I look good!!! Like that freaking helps!!
I don't show pain at all, and even my neurologist said yesterday that she could not see how bad it was, but tests showed I was in extreme pain, so I have an uphill battle convincing even doctors that I am in pain, so I understand why people question it, but I still find it unforgiveable.
If you have someone unbiased to talk to, such as a psychologist, or clergy member, or whatever, please talk this out with them, and keep in touch with everyone here. You have support!!!
As for the husband, sorry to say, my ex was the same way, hence why he was my ex, he never once thought my migraines were real...sometimes we have to make horrible choices, but we must to save our own sanity.
I hope you find someone to talk to about this
Wendy/crashgirl
Neeni, since you have no health insurance just maybe...maybe....this will help. I don't know where you are, but some states (a few I think) in the US have a charity hospital. They did in my home state. Don't expect the same care if you go into one as these institutions are inundated with people who don't have the means to pay. That being said, I would go to one anyway. Neuros and NS are sometimes called on in serious cases. If you don't have that available call around to some neuro surgeons (NS). Tell them you predicament. Tell them you have TN. And be desperate !! 14 years ago I was talking to the NS that was to do my gamma knife (GK). I asked if insurance would cover the high cost of it. He bluntly told me "don't worry about insurance. I'll do it for you even if you don't have insurance". He was a very understanding NS and knew how we suffered with it. Knowing what I have experienced, I would call around and see someone. If you do, be desperate.
Omg, I think deleted my post I’m sorry, I’ll get the hang of this site, hope u got to read it !
you poor person. i wish i could hug you and cry with you. i have no words. it is so unfair.
Jimmy, yes, I have a good amount of expierance with the health insurance in and outs, I do know of a few hospitals with " free clinics"
I’m in NY, thank you for the idea! I’m going to make a list now of potential ones to go to
Good ! This is not something one needs to approach casually and play around with. If family gets in the way, ignore them and do what you KNOW is right.
Wow, Maybe having him take a look at the book, striking back, with all those testimonials and explanations would hit his logical sectors. Otherwise, I think you might have to turn to close friends or family and ask for help. Your man is hedging for selfish reasons me thinks.
This is all too true and why this site is great for us. My Brain surgery MVD did finally convince those in doubt to a certain extent. Which is amazing to me, when you tell someone that you had to have brain surgery to get a little bit better, and they just say "o, ya my somebody was sick once" or the big one " you look great ". By making my husband take me to my appointments and forcing him to drive me to my support group, he finally got it when he was forced to sit in a room at my TNA Support group and listen to 15 other people say how this thing controls their life. Then he joined the FB group to show support and tell others about it. He gets those reports from others. My mother read part of striking back because I shoved it in her face. This helped her realize. But Dad he is a lost cause, so I do not bother being around his toxic attitude because no one could be in more pain then him.
There are some great videos of the last TNA conference on the TNA website that you could share with him, rather then wasting emotions, explain using tools and visuals. Facts can not be disputed.
I believe in you my dear!
You can lead a horse to water but you can not make him drink-Tree
Bless your heart. Assume you have showed him description of TN from the internet, can't believe you would then question anything. Have him read some of the 'Striking Back' by Ken Casey, noted TN neurosurgeon..great book about TN, facial pain. Or , let him look at this website, that should make a believer out of him once he reads all the peoples stories who have TN. Best wishes and you are in my prayers! Have him go with you to a Dr. appointment, that should help him understand more too.