I don’t have trigeminal neuralgia, but my boyfriend does. I joined a few weeks ago when he was having very bad attacks and when I thought I needed some place to go because I was going crazy. There are times I have such a hard time comprehending what he goes through and coming on here helps me understand. Then he went into a two week period where things were better. I know he never goes a week without pain, but I have learned enough about him to know when he is feeling good, ok, bad, or terrible.
Things have been ok lately, so sometimes I stop thinking about TN with him and enjoy some normalcy. Today, we were out doing errands, and he was getting really snippy with me. He generally gets very crabby before an episode, where he sometimes says not so nice things. I have learned to realize it, but today, I forgot where it came from and got upset with him. The episode came after, and I went home and cried because I felt so terrible for getting upset. It doesn’t help that he never likes to talk about it with me or communicate about it. He has slowly opened up to me about it, and I am the one and only person in his life who knows and understands. I have to had to learn his signs and triggers through observation and some very tough times in our relationship to know what it was all about. Sometimes I think things would be better if he would just say get I feel awful today instead of me having to figure it out through episodes like today. I don’t know what else I can do. I have accepted it and am ok with it, but I wish he would let me be there for him.
He also takes no meds and has no treatment. I wish he would seek some assistance. He used to see a Dr. And take anti seizure meds but refuses to do anything anymore because it doesn’t help him. After reading everybody’s posts on here, it amazes me that he takes nothing.
I guess I needed to talk, but does anyone have any advice for me? What can I do to be supportive for him and help him reconsider visiting a neurologist. I know it has been at least two years since he has had any meds. Thanks!!!
First, Kristen, let me say it so evident from your post that you are amazing! He is so blessed to have you. TN is a terrible thing to have and often to share, because no matter how long you have had it, I believe, at least for me there is just this sense of really, why the hell did I get this! I want to share with you, my hubby had a medical accident 4 years ago, a treatment that was to help diabetic neuropathy, instead it burned all the skin off his feet. I at this time had, had TN for almost 7 years. He was in the hospital 2 1/2 years, lost a leg, lost his kidneys (on dialysis), in a wheelchair, I am his one and only care taker, of course wife too, but wife and care taker changes things. It does not change love, just the situation. He like your man, does not always communicate well. Do men ever, giggle, don't yell at me guys! I know hubby hates what has happened, just like TN does to us that have it. We are pretty young to be dealing with all this, but we keep on and you and your man can as well. Yes, I agree he needs to at least try meds again, but it is finding that right DR, for me they at least make many days liveable, and I won't quit in any case. No insurance on my end, but blessed in finding those special people that can still make it work the best it can. You seem to have a really good take on things, I do the same as your man, as I feel the twinges that will lead to full blown attacks, I attack, frustration and anger. My hubby doesn't always understand to me, but truly he does and I know that. Hang in there for you and him, try your best to talk to him and just try seeing another DR. And most of all, we are here, thank you for loving him so much and for reaching out. Sometimes just sitting together holding hands works! God Bless.
P.S. Forgot, never get upset with you for getting upset, it happens. I get upset too and I know that feeling of regret of why did I do that, you know why, because we care and we are human, be good to you too!
Hi Betsy! Thank you so much for your comments. They made me feel much better. Sometimes I sit here and think I need to do better or be a better partner. I think I do pretty good, but my analytic self sometimes over-analyzes what I do (I am currently an administrator but my original profession was school psychology--hence my analytical nature). It is just so hard when things are going good, and I hate when it comes out of nowhere. I don't like it, so I can't imagine how he feels. I know he struggles, but he is such a great person. Sometimes he needs to be reminded of that. Thanks again for the encouragement!
Betsy Carlson said:
P.S. Forgot, never get upset with you for getting upset, it happens. I get upset too and I know that feeling of regret of why did I do that, you know why, because we care and we are human, be good to you too!
Thank you Kc Dancer Kc! I know he had the Lidocaine Patches, because I was helping him move out of his old house a couple months ago, and I came across them. I asked him what they were for, and he said nothing (his usual answer). He asked if I wanted them, and I said, I don't need them. He said I could use them for sunburns. I figured they were something for the TN but didn't probe any further. He was going to throw them away, and I said he should keep them just in case. He did keep them. He lived with me for three weeks during the transition from his old house to his new house. During that time, I think the pain was somewhat improved because I had only counted about 2 major episodes per week. I was taking better care of him than he does on his own. When he moved out, we both had a rough July...me with him leaving, and he had a rough three weeks of pain. It improved the last two weeks, and this has been the second major episode in those two weeks, which has been an improvement for him. I never saw him once use any patches or topicals that I knew of. He usually would go in my spare bedroom and lay in the fetal position in the dark with a blanket over his head. I would leave him go, and it usually had improved in the morning. I do feel his eating and sleeping habits affect him, he is a single guy (I am 29, he is 32), so I think he was better when someone was there to cook because I know he doesn't do it when he isn't feeling well. Thanks for the help. This has been like catharsis :)
Kc Dancer Kc said:
Here are a few links for you to share with him
Topical meds we love....... Can get from primary doctor
Karen. He is very lucky to have you in his life. I have had TN for a lot of years and even now my hubby has trouble understanding my pain. Do try to have him see his doctor or neurologist for follow up. Also if you are here seeking assistance have him read what others are experiencing as it may help him understand what he is going through and that there are some solutions for him.
Chippy
hi Kristen. being the partner of a tner is very difficult. you get to see him at his worst and can do nothing about it. that must be very frustrating. you sound like a very wise woman. i would encourage you to remember that you are only human though and that you need a break too. you are not responsible for him being comfortable and pain-free. you are a support and not the cure. hopefully you can both feel encouraged and supported by the wonderful friends in this community. hugs to you both
Hi Kirsten, thanks for sharing that with us. It was very interesting to read that you've identified his getting crabby before an attack comes on. Good for you! I know I can get like that too. I get a sinking feeling like I'm about to be dragged under water and I have no idea how it will play out which of course causes anxiety and anger. I also find that any type of noise starts to irritate me as it can cause even more pain. It would be nice if he could find something that at least lessened the pain and the number of attacks. He's a lucky man to have you.
Hi Kristen, I will try not to repeat everything already said except to say again that your boyfriend is extremely lucky to have such a compassionate and patient partner in his struggle. All of the sites mentioned as well as this Association are helpful. Now I will something a little different. As a older prior “macho-type” guy based on ethnicity, culture and generation born I understand completely your boyfriend’s behavior. I am a former football coach and player, weight lifter, boxer, and full contact kick boxer and karate instructor. I also loved to go Latin Dancing with my wife and hang out with the “Boyz” including my son’s in the clubs. One of my son’s is 5 years older than your boyfriend and one 5 years younger. I did this until I was 55 years old and became ill. I was always proud of my high pain threshold, fought with broken bones, played football with a broken wrist and was trained by my grandfather since I was 3 not to cry or get Novocain when you got to the dentist. I guess you see where my early attitude came from, the quote “boys don’t cry” was drilled into me by my father, grandfather and grandmother, over and over again. My point is not about me it’s about how many men are raised and have a hard time admitting to being vulnerable, in pain or needing help. Many of us have been taught that we must be “strong” at all times and never let anyone, including and may be especially the person we love see us “weak.” Also, for me and perhaps your boyfriend too, (especially if the meds didn’t work) some of the meds make you feel that you are not in control physically and can increase depression. To a man raised like me it was very hard to let anyone know or see me. I pushed everyone away; my wife, my sons and my friends. Denial first, then anger and despair. Then hopefully acceptance and willingness to share and let others in. Not easy for men who were raised not to do so by their family or society. I didn’t learn that at home, on my “block” or “hood” or Vietnam. I suggest 2 things: (1) give him time and space and continue to let him know you’re there; and (2) show him what I wrote and tell him he can send me a message anytime. If he decides to do so just have him become a member and friend me or you can. Good luck and God Bless you and him. Oh, tell him since I’ve learned to share and let people “in” my life has been enriched and the burden and stress that this disease and life causes has been lessened. HMB