My boyfriend was diagnosed with TN less than a week ago. It has been extremely difficult to accept for the both of us, and the main concern besides his health is the fact that he is the sole provider for our household, and as of now he is unable to work. We have yet to get an MRi (scheduled for tomorrow) and I am optimistic that this will have more answers for me. I can’t help but feel so angry about the entire situation, he is such an amazing, hard workin man…I’m sure every one of you are familiar with feeling like this, but I don’t know how much more I can take of being strong while he cries out of pain AND frustration. I guess my question would be what do you suggest I do, as his caretaker, to make sure he feels as safe, loved, and cared for as possible? This is all so new to me so I appreciate any help . Also, is there anyone out there in the San Diego area? I’m sure he would like to connect with someone he can relate to 
what a strong woman you must be. and what an act of love to stay & want to help. I am very new here (just a couple of days) but I understand there are some resources for family & caregivers. have you tried the Face Pain Info tab? hopefully someone more knowledgable than me will respond. stay strong,
Hi, I’m about 4 weeks out from my initial diagnosis and I’m starting to feel like I just might be able to handle this, at least a little bit at a time. It is not fair, it is not deserved, but all of a sudden through no choice of your own you are forced to deal with this. Some of the things that have helped me are getting some-not total- pain relief, getting through the first few “hurtles” of initial dr apps, first neuro appt, first MRI (although mine, like many, showed nothing except that Istill had a brain in there). The neuro helped not by curing it (not sure that is ever going to happen) but by letting me know that someone understood it and would help deal with the pain. A couple of things have forced me to think of other things, such as my daughters birthday this week-end and HAVING to go back to work. I run to this site a couple of times a day too, looking up one thing after another and seeing that I am not alone with it. You might also need to love him but give him some space so he can dig down inside himself and find his personal resources to deal with this battle he is facing. Most guys have to do a certain amount of this themselves as well as deal with all those issues about always being the provider and the one to always “fix” everything… Yet here he is facing something that he is limited to control. Sounds like you need to take time to care for yourself too or you won’t be able to help him or take care of those kids that it sounds like you have. You guys are in my prayers, hang in there. Please write if You want to talk! Take care!
Sorry to hear about your boyfriend. I would suggest both of you try to find out as much as you can about TN. It is rough to see a loved one in horrible pain and not make the pain go away. My husband has a hard time watching me go through attacks. Some times the most comforting is just for him to sit by me. It won’t make the pain go away but it sure is comforting.
Depending on his MRI results you should have a discussion on what he would want in times of breakthrough pain. This can be the time where poor decisions can be made. So it is better to know what his wishes would be during these times. You also might want to prepare your selfs if nothing shows up on the MRI or if something unexpected shows up, like a visual abnormality. I don’t want to scare you but just be aware these can come up. Ask as many questions as you and he can. Write down the answers given. This can help both of you to remember them, and aid in researching information. Also make sure you are both aware of medications and their side affects of medications he’s given/ taking. Lastly making sure to ttake care of your self, I think my husband is my care taker burns himself.
Before we moved back to Orgeon we lived in San Diego for seven years. I miss the food down there so bad. Fish tacos are so gross up north. Where in San Diego are you at? I hope he is able to be pain free soon.
Hi lauraann4. I live in the San Diego area. Feel free to message me anytime. I'd love to help in any way I can.
if he is the sole provider than im sure you stepping up and takin on a job or two willreally relieve some of his stress
crystalv said:
Hi lauraann4. I live in the San Diego area. Feel free to message me anytime. I’d love to help in any way I can.
where in san diego are you located??
crystalv said:
Hi lauraann4. I live in the San Diego area. Feel free to message me anytime. I'd love to help in any way I can.
Thank you so much for the advice. this week is pretty much lined up with doctors appointments, and he asked me to drive him to work today..so I did, and he actually did okay. He didnt have any attacks, but had a mild pain in his jaw all day. I bought him some special mouthwash for those days that he cant brush his teeth, and making food that he is comfortable chewing. I think the medicine is starting to work too, he hasn't had an attack in over 24 hours (knock on wood) so hopefully after 4 days of constant pain he at least gets some relief. Thanks again for the advice and I really hope that everything is okay on your end too! talk soon
TL said:
Hi, I'm about 4 weeks out from my initial diagnosis and I'm starting to feel like I just might be able to handle this, at least a little bit at a time. It is not fair, it is not deserved, but all of a sudden through no choice of your own you are forced to deal with this. Some of the things that have helped me are getting some-not total- pain relief, getting through the first few "hurtles" of initial dr apps, first neuro appt, first MRI (although mine, like many, showed nothing except that Istill had a brain in there). The neuro helped not by curing it (not sure that is ever going to happen) but by letting me know that someone understood it and would help deal with the pain. A couple of things have forced me to think of other things, such as my daughters birthday this week-end and HAVING to go back to work. I run to this site a couple of times a day too, looking up one thing after another and seeing that I am not alone with it. You might also need to love him but give him some space so he can dig down inside himself and find his personal resources to deal with this battle he is facing. Most guys have to do a certain amount of this themselves as well as deal with all those issues about always being the provider and the one to always "fix" everything... Yet here he is facing something that he is limited to control. Sounds like you need to take time to care for yourself too or you won't be able to help him or take care of those kids that it sounds like you have. You guys are in my prayers, hang in there. Please write if You want to talk! Take care!
i have taken your advice to sit next to him and sometimes he lays in my lap...just that small amount of contact means the world to me since it is so infrequent now. He is visiting the Neurologist on thursday so hopefully we have some answers. We live in north county- Poway area if you know where that is. And yes, the mexican food here is AMAZING! you pretty much cant go wrong anywhere you go...we are spoiled with delicious mexican food and beautiful weather :)
Kari said:
Sorry to hear about your boyfriend. I would suggest both of you try to find out as much as you can about TN. It is rough to see a loved one in horrible pain and not make the pain go away. My husband has a hard time watching me go through attacks. Some times the most comforting is just for him to sit by me. It won't make the pain go away but it sure is comforting.
Depending on his MRI results you should have a discussion on what he would want in times of breakthrough pain. This can be the time where poor decisions can be made. So it is better to know what his wishes would be during these times. You also might want to prepare your selfs if nothing shows up on the MRI or if something unexpected shows up, like a visual abnormality. I don't want to scare you but just be aware these can come up. Ask as many questions as you and he can. Write down the answers given. This can help both of you to remember them, and aid in researching information. Also make sure you are both aware of medications and their side affects of medications he's given/ taking. Lastly making sure to ttake care of your self, I think my husband is my care taker burns himself.
Before we moved back to Orgeon we lived in San Diego for seven years. I miss the food down there so bad. Fish tacos are so gross up north. Where in San Diego are you at? I hope he is able to be pain free soon.
Hey!
I think that it is awesome that you are getting on here and want to do whatever you can to help your boyfriend. I have had TN for almost 10 years now. My boyfriend has been with me, through attacks for the past 4 years. My biggest and most helpful think that my boyfriend does is to be educated and an advocate. Unfortunately, sometimes with TN the patients and family MUST know more than the doctors do. This is a tricky pain to treat, so keep up to date one any new info. Also, talk to him and see what he wants you to do in various situations; severe attack at home, needing to go to the ER, when he can't talk, etc. Setting up a procedure for all of these situations can lessen the stress load.
And as for stress..I know hard it is to not stress. BUT stress could be a huge trigger!? So, notice what you can do to lessen the stress load. And for the stress that is put on you..vent? I don't know what it is like to be in your position, but I do know that it always makes me feel better when I have someone with me, so don't give up.