I was officially diagnosed 10/2012. I had other signs prior but nothing that didn't last one day (once a year), that I couldn't ignore or work around on a daily basis (ie: not chewing on one side, no cold drinks). I honestly, thought it was a problem from over bleaching my teeth while a teenager.
My husband thinks I'm crazy/a drama queen. I can honestly say from sept-oct 2012, I was a mess, crying every night, unable to sleep (and I'm a big sleeper) and felt like my body was working against me! Got over the major hump, now on carbamazepine. But I feel like I haven't been able to recapture the person I was last summer. I take ibuprofen for daily pains that I have (constant dull aches) and I feel the carbamazepine is to help with the brake thru pain.
I feel 10 years older and I feel, I look 10 years older. I think it was so taxing on my body, that my natural glow I had, is now gone . . . Is this a normal complaint?
For the first time in almost 4 months, last night I again woke up with major pain (it always happens when sleeping. Sometimes it will be for 15 mins, sometimes it will be for HRS, no matter what I do). I told my husband I'm not going to work, I've take too many meds over the night to drive (and function). He said "this happened because you have been talking about it". It has been worse this week, I had upped my meds and I told him so (he who is against ALL meds) due to too much stress at work. Thus now he thinks if I talk about it, I will bring it on myself? To test his theory, I'm going to talk about one million dollars this week . . . in hopes of it landing on my door step!
I think he just has a hard time understanding something he can't see nor feel . . . any suggestions?
Hi Mrs Nelson! I don’t know if anyone who hasn’t experienced this pain knows how you feel. I know some spouces and family can be supportive but usually they get tired of either you talking about it or of seeing you in pain… I think mostly because they don’t understand or maybe they feel powerless… like they can’t do anything about your pain. The good thing is that you have people here who can listen and maybe give some advice… of course that always helps…getting it off your chest helps! As far as your spouce… just give him time… try to find a few.friends that can be there for you at night when you need to talk… look for some alternative medicine like meditation or drinking herbal teas… things that will help you cope through the pain… and relax you. get in tune with your spiritual side and eventually your spouce will understand. Its tough for your family to see you go through this as well. Theyre going through their own adjustment with you being sick or in pain…Praying for you girl!
I agree that it just takes time for them to understand the pain. Watching you run to the doctor and come home with more and more drugs. Talking and finding information on it. KC Dancer has posted a discussion about a video she found. Did you see that. Please be patient with him and he will learn to understand and be patient with you.
Oh honey I’m sorry for all of this. Sometimes it is hard for other people to understand what we go thru. It was not till my hubby went with to the neuro whom spoke to him more at that appointment then me that my own husband understood a little, then he really got this spring when my TN went crazy. Maybe take him with you to an appointment at the doctors. They might be able to help him understand this is not a in your head drama lama act. I cment more later on this but I just wanted to say I understand and have been there my self. Hugs and hope you have a pain free day.
Hi there -- he will never understand. My hubby was MUCH more supportive while in pain than he was when I had NO IQ on those stupid meds.
See if your doctor will give you something topical -- lidocaine patches --- lidocaine with ketamine from a compound pharmacy--most of us have not had the problem of pain during sleep - you may need another add-on med.
You may need your dosing of regular med to go up.
Tell him this did not used to be called the "Suicide Disease" for nothing!
Also print off google images.... put in Trigeminal Neuralgia and show him how real this is and where the nerves are .... some guys are visual.
Click on this link and print it off for your husband. It's helpful for hubby or anyone to understand - print off for anybody else in your life.
For yourself - please get the book "Striking Back" by Dr. Ken Casey - it has 90% of all the treatments out there and the more you learn, the faster you can feel better.
Yes TN and the PTSD it had after my surgery left me a shell of a person that I was. Even after the pain was gone, I would always expect it in the wind, etc.
See if there is a local support group in your area in the tab above.
Thank you so much for everyones time in responding to my post.
My husband and I talked about it last night and as always he says I blow things out of proportion . . . I can honestly say, I probably do. When I'm not feeling well. No one can say anything right . . . . and I do need to work on that.
I did read the story about spoons, it did ring some truth for me. And Kari, taking my husband to an appointment, might not be a bad idea . . I never have before. Also, KC Dancer, your right, we have no IQ on these meds!! Which I know is hard on everyone . . . .
Again thank you for everyones time. Hope everyone has a few "spoons" left over tonight!
I'm sorry you are going through this. I am lucky to have a very understanding spouse, but it still took a toll on our relationship. I was always tired and confused on my meds.TN was the center of my universe. It took over my life and I felt that I would never again be the person I was before it got so bad. It wasn't until my husband witnessed a full-blown attack that lasted for an hour that he truly understood how much pain I was in. I explained it in terms most men could understand. I told him to imagine that someone was jamming a hot soldering iron with electricity running through it down into his jaw and they wouldn't release it no matter how much he begged for mercy. Although he couldn't feel my pain, he did gain an understanding of what I was going through. I had an MVD about 4 weeks ago and am completely pain free. I am almost back to my old self already. My husband and I actually have a stronger relationship now that we've gone through this together.
This is not in your head. You are not inviting the pain by thinking and talking about it. In fact, if you don't talk about it, you will get very depressed. Please don't let anyone make you feel that way. Take care of yourself and do what you have to do to make yourself better. We have all been through this and understand how isolating this condition can be. Be strong. If your husband can't help you, ignore his negativity and look for support elsewhere. My thoughts are with you.
Bless you, brownkat. Bless you for your response, and I hope it's helping Mrs. Nelson as much as it helped me tonight.
brownkat said:
Mrs. Nelson,
I'm sorry you are going through this. I am lucky to have a very understanding spouse, but it still took a toll on our relationship. I was always tired and confused on my meds.TN was the center of my universe. It took over my life and I felt that I would never again be the person I was before it got so bad. It wasn't until my husband witnessed a full-blown attack that lasted for an hour that he truly understood how much pain I was in. I explained it in terms most men could understand. I told him to imagine that someone was jamming a hot soldering iron with electricity running through it down into his jaw and they wouldn't release it no matter how much he begged for mercy. Although he couldn't feel my pain, he did gain an understanding of what I was going through. I had an MVD about 4 weeks ago and am completely pain free. I am almost back to my old self already. My husband and I actually have a stronger relationship now that we've gone through this together.
This is not in your head. You are not inviting the pain by thinking and talking about it. In fact, if you don't talk about it, you will get very depressed. Please don't let anyone make you feel that way. Take care of yourself and do what you have to do to make yourself better. We have all been through this and understand how isolating this condition can be. Be strong. If your husband can't help you, ignore his negativity and look for support elsewhere. My thoughts are with you.
On my first Neuro appointment my Neuro spoke to my husband explaining to him although i would not die from it, it was an extremely painful condition. At first I was annoyed he was spending so much time speaking to him about my condition but now I am thankful as my husband then accepted what I had been telling him myself!