Anyone else find that TN is affecting their relationships. I’ve been with my partner four years and had TN for a year now. At first he was really good trying to comfort me during attacks but lately he’s just getting annoyed. I’ve been really bad the past couple of weeks and he’s getting angry at me telling me to go to my doctor and not leave until they give me something for the pain. He doesn’t understand that when I go I get the whole “carbamazepine is usually the best thing” and they can’t give me strong painkillers because neuralgia doesn’t respond to them. So now he’s getting pissed that I’m not going to the doctor. Also I’ve been up late at night sat rocking in the bed (this helps me cope sometimes just a natural reaction to being in pain) or I’ve slept in the room. This is also getting to him because he doesn’t understand why I don’t just “lie down and try to sleep” …being atypical lying down feels like my heads is going to explode. Sorry for the rant but I need some advice and just wanted to tell people who actually understand.
Hi Elle,
The only advice I can offer for your partner's lack of understanding is counseling. If he can't see the obvious (your pain and absolute frustration, your courage in making every effort to get better), then you two might benefit from a professional's assistance. The last thing you need is added stress of your partner's lack of understanding/support.
Bless you,
Rissmal
I understand what you're saying. When I first started with the ATN, my husband thought it was just me being crazy. Then I asked him to come with me to the doctor and have her explain it to him. That really helped! Somehow, hearing it from the "authority" made him realize that this was real. He still has his moments when he resents the fact that I often have to cancel plans, and I'm not always able to just go to bed at night and sleep (even with Ambien). But overall, he has been more supportive. Maybe if your partner could hear it from the horse's mouth, he might be a little more understanding. Maybe worth a try?
Thank you to both of you for your advice and kind words 
the problem is that he thinks doctors “chat shit” or don’t know what they are talking about due to them not being able to find a cure. However, I definitely think if I take him with me to speak to the neurologist he may be more inclined to listen to a specialist!
I’m so sorry, although I’m married my husband just ignores me. He takes off for work everyday and works long hours. That’s how he copes. Lovely. My kids ignore me too. And my sister hung up on me today. I’m pretty much stuck here in the burbs by myself which is so hard cause I’m very active so for me to be stuck in this house sick from the meds is extremely hard. I wish I had some advice but email me if you need to vent.
Your partner is fortunate not to have to live with a painful condition that is not cured. Nearly all of us find med combos or surgery that help us regain some semblance of our old lives but we are never exactly the same as before tn. This is difficult for a partner to accept, especially if you and they are young.
As someone who rejected prescriptions from doctors for years I learned to take what I need now. When you figure out what works, so often life happens and a few years later it doesn't take care of the pain anymore and you and your doctor have to find a new solution.There are several resources which you may want to read and watch first and if you think he will be receptive, share with your partner. The book "Striking Back" (that one its mostly for us), Dr. Ken Casey's video from a TN conference where he answers questions from the audience (the video has been linked several times on this site) and "The Spoon Theory" which is not related to TN specifically but does help people in our lives understand the chronic pain and challenges we face. I am partial to Dr. Casey's video as it is encouraging to me, knowing we have such a brilliant man committed to our cause. The video itself is long, around two hours, but you can break it up into sections and sometimes I just leave it playing in the background as I have watched it more than once and learned something new each time.
I’m sorry Susan that sounds really tough 
people need to understand that it’s not our fault. I actually wish they could each experience it for just one day so they know what we have to cope with. X
It is difficult. I’ve had people close to me say that I’m fixating too much on this, and if I just ignored it, it should go away. It’s difficult to make them understand that it’s impossible not to fixate on something that is causing you pain at every waking moment. If someone came and repeatedly stabbed you in the face, would it be reasonable for me to tell you to ignore him? Of course not. But because our illness is invisible, other people will say things like that.
All I can say is that I can empathize with you. What we should remember is that our family members do love us, but they also have limits. They are aggrieved that we’re not the same as we once were. I try to limit how much I talk about this out of consideration for others. I ask them how their day is going and take time to commiserate with them about their problems, even if they are minor compared to mine. Relationships are give and take. If I ask people close to me to always give and give and never get anything back in return, I know they will eventually reach their limits no matter how much they love me.
I understand it too well.
I don't mean to defend him but he's probably just hurt by seeing you hurting. He just wants your pain to stop, so he wants something to be done.
But most people don't understand how difficult it is with doctors and treatments. They think it's some easy fix, go and get a prescription. I'm sorry you haven't found anything good yet.
You’ve made a good point toothache, I do try to see things from his point of view hence why I sleep on the sofa sometimes so he can get some sleep. I will definitely try to curb my fixation and on good days try to be my old self without going on about it so much.
My husband still uses the mantra "mind over matter" much to my frustration. I'm new to this forum, so I'm really happy to hear people vent! Suddenly I'm not alone with this! Another thing my husband doesn't understand: there's the pain, and then there's the ANTICIPATION of the pain, never knowing when it's going to hit like lightening. I feel like I'm treading carefully through life at times, much to HIS frustration. I think counseling is a great idea, especially if you can find a therapist who has experience with chronic pain.
While this is my first reply, this is likely the best place to rant.
From being on the other side of the partnership, my biggest thing is communication. I have been with my significant other for over a year…through good times and bad times. I always said telling me what was going on and why or what triggered it. I hate if I feel like I’m the trigger–that’s the worst feeling in the world. It always helps me for him to clearly communicate and for me to know he still cares, especially after an attack in which I had to be present, as I often feel like I did something or lacked something.
My biggest thing too is that when he is feeling better, I request he give me a little more of his time so we are able to have some sense of normalcy.
I think intimacy is something that is impacted by TN as well, although I never see it explicitly talked about it on here. Let’s admit it–when you’re in pain, those intimate moments are just not gonna happen! But lack of intimacy can also impact a relationship–so communicating about it helps. Sometimes we need to sacrifice–I sacrifice intimacy and his company at events at times, while I think he sacrifices a risk of an attack to be intimate and to do things I like to do. Because of this, I’m more understanding when he can’t do those things or participate in events, but I’m over the moon when he can and know he really cares about me to do so.
I think those are the biggest issues I have had to encounter from a relationship perspective. I think compromising, understanding, and communicating are key, as with any relationship. TN def impacts a relationship, but I think I’m a factor in my boyfriend’s life that keeps him in the real world and sustains a sense of normalcy, and I think he likes that balance. Sometimes TN takes over the relationship to no ones fault–and the one without TN feels that too. So just remember to communicate and when you’re feeling up to it to give back time and communication to the other person.
Hello Elle, you are brave to tell your story and I know a lot of us can relate. My husband put up with it for ten years. I told him to leave, to divorce me, to leave me alone, we stopped having sex many years ago. But he just stuck it out. He bitched a lot. But he stuck it out. Some guys can hack it and some just can't. One thing I regret is not having the MVD surgery much sooner. If I could go back, I would not have had the balloon stint procedure and I would not have stayed on that useless friggen Tegretol for a decade before finally saying ENOUGH! I am just coming out of MVD surgery and absolutely NO TN! However I am very numb on the right side of my face and dizzy - vertigo. Its only been two weeks and these side effects are common with the MVD and some get over them and some don't. Find the best doctor you can! My doctor was Paul Penar at Burlington VT Fletcher Allen Hospital. He is really kind and soft mannered and experienced. The problem was that the ICU recovery SUCKED so until I got out of there (the first 24 hours) and onto the regular floor where I stayed for the next few days, that ICU was like being eaten alive by a rabid pack of wolves. AWFUL. It is a teaching hospital so while the doctors are fantastic the rest of the staff is generally clueless. Well I hope this helps! Good luck and hold tight! Nicole in VT
My husband has been very supportive and understanding in the past, but has more recently said things like “you can’t let it rule your life” and “don’t let it stop you doing the things you want to do” And when we have arguments over crappy stuff it’s never because he has been drinking or using pot, but because I’m irrational due to my illness and meds. I’m going to start recording these episodes and show him when he is sober LOL.
And yes, the anticipation of pain can never be understood by someone not suffering TN. It’s like being stalked by an invisible monster with a fistful of sharp knives.
ChaosGuru said:
My husband still uses the mantra “mind over matter” much to my frustration. I’m new to this forum, so I’m really happy to hear people vent! Suddenly I’m not alone with this! Another thing my husband doesn’t understand: there’s the pain, and then there’s the ANTICIPATION of the pain, never knowing when it’s going to hit like lightening. I feel like I’m treading carefully through life at times, much to HIS frustration. I think counseling is a great idea, especially if you can find a therapist who has experience with chronic pain.
I think that is a great idea Chaos. It is awful to be the person suffering from extreme agony and have people around you just look at you like you've got two heads. There often isn't enough understanding, empathy or support from friends or family members. They have the luxury of idiotic suggestions because they don't know how this feels. I still carry with me a great amount of resentment that I have to deal with as you can see. I got to the point that I basically said screw you to everyone who couldn't empathize, husband included. You learn to find your inner strength without their support. Thank you for letting me vent! Nicole (three weeks out of MVD surgery).
ChaosGuru said:
I understand what you're saying. When I first started with the ATN, my husband thought it was just me being crazy. Then I asked him to come with me to the doctor and have her explain it to him. That really helped! Somehow, hearing it from the "authority" made him realize that this was real. He still has his moments when he resents the fact that I often have to cancel plans, and I'm not always able to just go to bed at night and sleep (even with Ambien). But overall, he has been more supportive. Maybe if your partner could hear it from the horse's mouth, he might be a little more understanding. Maybe worth a try?
I can relate. I am sorry for anyone going through this without support from another person.
I am trying not to care what my fiance and others think, like Nicole said. If I care, then what they say hurts a lot worse.
It's worst when you don't have a solid diagnosis or when you have one, but you don't have a doctor to work with on treatments. Then like you said, Elle13, we might be blamed for not going and getting treatments. I can't get them if there's no doctor who listens and knows about my type of TN (atypical).
I am really sorry about your situation Duckie. That's what bothers me the most, when I think I'm being blamed for things instead of the guy looking at what he did to create the situation too.
I have issues that cause me problems in my relationship as well. My neurologist gave me a muscle relaxer (something like Tinzanidine sp?) and it helps me sleep at night. Just look out for more problems, my meds make me want to (and sometimes have to) sleep during the day or not be able to go out on weekends and stay out as long as I used to! I think my number one pet peeve is when she looks at me and says, "what's wrong with you?" So I hope it gets better for you. Sorry I threw in a little "rant" of my own.
I'm beginning to realize I have so much anger! It's RAGE! I am so mad at everyone around me who doesn't have a clue and really isn't asking the types of questions that would indicate they even want to have a clue. When I was having electroshock to my eye the last thing on my mind was how THEY FELT. I am glad to have the MVD surgery behind me, but I am dealing with paralysis now and still getting the same useless stares. I don't need their support or their damn pity, I just want everyone out of my face. Second thought - obviously I need support. Otherwise I wouldn't be here. I just got tired of expecting my family to understand. They are never going to. - Nicole in VT
Nicole, that happens with me. When someone seems like they won't ever get it, it's so hard that I want distance between me and them.