My husband started getting TN symptoms a few months ago. He has been diagnosed and put on Neurotin. Which only seems to work some of the time. Unlike what I hear described here his attacks can last for hours (mild to moderate). His severe short burst attacks seem to be controlled. However it seems anytime he has a day off of work he is miserable all day. I know he hurts and I'm sorry he does. I'm not going to leave him over it or anything but I AM tired of it. I'm tired of not being able to plan anything with him. I'm tired of feeling like I'm parenting by myself. I have some issues of my own but there's no time for my pain, I just have to suck it up because someone has to be a parent and get work done. Anyone here understand that, anyone have a spouse who is stressed by all of it? I feel horrible for feeling this way.
I would never say things like that to him. That's awful and I'm sorry. I do feel horrible for him. I just know that right now I feel like a single parent that is having to hold everything together by myself. A feeling I am not use to when before we were the perfect team. I miss him. I feel like he's gone. Nothing is the same and I'm really worried that he will forever be miserable. For me it's not that I am self absorbed, but that I want to feel I at least exist again.
Hi Peeples,
Listen its okay this is extremely difficult on family members especially the spouse. I am the one in my family suffering from TN and have had the surgery with newly diagnosed on the right side. We are never able to make plans ahead of time and my husband feels very bad but I can see his frustration not with me but with the disease. At first onset he had no idea how this pain in my face could possibly be that bad, it took him awhile to understand the depth and severity of the pain. I think its better now but still feel he rescents me for having this, although he says no. It affects the family no doubt about it. Have you read any info on this Peeples? Maybe going to talk with someone might help, just suggestions. I am sure you feel all alone. I see this in my husband. When I was about to have surgery he watched a video with me which helped him and gave him insight . TN attacks come when they want, it does not really matter it is inpredictable. It creeps up when you least expect it to. Has your hubby been on medications yet and is surgery an option for him? Do not beat yourself up this is a disease that effects the whole family. It wears everyone down. We dont mean to be antisocial, we do not mean to isolate ourselves. It is just a monster of a disease. The pain is so horrific we do not know how to get thru one attack to the next. Not knowing your husband I am sure he is trying his best but it wraps itself around you and just will not let go. I find sitting down with my husband and children and explaining to them that I understand its difficult for them too helps. Making plans and saying no I cannot go because its a bad day is hard and this happens quite alot.I just tell him honey I know your upset that I cannot attend this function with you and feel bad because I would love to go and be with you validates his feelings as well. Reading info on this also helps enlighten them about tn. I hope this helps you and this is a great site to ear your feelings and get information that will help in your understanding of TN. We are hear to vent and listen and help. God Bless and hang in there and do not beat yourself up
My Best to you
joanne
http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
And perhaps call doctor - GP or neuro and ask to have prescription called in for lidocaine patches. you cut them up into pieces that fit where your pain is - and many here have gotten hours of relief from this topical tool !
Let me know if this helps : )
(( peeples)),
No, you’re not a horrible wife!
It’s only normal to be feeling all the feelings you shared…it’s tiring having to be the main caregiver and parent. It’s hard adjusting to a “new” way of life, one neither of you asked for or deserved. It’s super frustrating. Just as much as your husband is suffering and mourning the losses of who he used to be, so too are you suffering and mourning right along side of him.
It’s ok.
I think what’s helped my husband & I get through it is our ability to talk about it.
I’m the one with the TN, off of work, can’t drive, very social and for over a year have been home bound pretty much. My husband is the quieter one, and has had to take on everything I could no longer do. Which is a lot.
Driving my teenagers around, grocery shopping, running errands and some household things as well. It’s been a rough year for ALL of us. My husband never complains, BUT I make sure to acknowledge everything he does and I encourage him to go out with his friends or attend functions that last minute I can’t go too. It’s not fun, neither of us likes it but its important that he gets out and socializes. Most of our close friends understand my situation, so they come here, sometimes I can participate, other times I sit to the side in my Jammie’s with a heating pad. They play cards and I can visit to a certain extent.
Really important that you both talk about all the changes. Acknowledging all of it is the first step and the little by little you can try and adjust…
As for your pain, uhm YES there is time for you, you need to call your parents, his parents, a sibling, a neighbour, friend anyone to take your kids and give you a break!! You need to take care of you, if you don’t, then who will? You can’t do it all, so it’s time to start asking for help.
We had to learn that concept too, it’s hard, but you know, people truly do want to help.
Take advantage of that.
Share your thoughts and feelings with your husband, let him know how much you wish things were different, ask him how you can help him, suggest ways that you can spend time together.
I don’t know your husbands TN story, but some days can be better than others, and if he’s working and on medication and his pain isn’t controlled, then his days off may be the only days he’s able to just rest. Share your feelings, if not with him then a friend or counsellor, it’s hard to cope and you can’t be super woman. We all feel the same things, it’s normal.
Don’t feel horrible, give yourself a break and allow yourself to grieve too, better days will come again. You have to believe it. This is hopefully just a Blip that will bring you closer together.
((( hugs ))), Mimi