I just need someone to talk to who understands how im feeling. I feel likeno one uunderstands what a tole on my ENTIRE body this is doibg. Yes, my head is the main complaint. . However, im so tired!!! I just want to sleep!! My whole body hurts, everyday. As if ive been beaten the day before. My son is six and i jusy cant do anything with him and i hate it. My husband, is trying so hard but this ruins our special times together and effects every single day. I hate this… i cant get relieve and im feeling overly depressed and stressed beyond believe… please… please help…
I’ve been in your place and it’ no fun at all.I always was able to find some small joy or victory ,but I know sometimes it is difficult.Your husband is supportive and that is huge!Many people care about you and things will get better.Peace.
Hi Princess. I know how you feel. Yet I don’t have a child so I can’t imagine that extra responsibility which gets impacted by this disease. I agree with Don’s answer above - you have a supportive husband and that’s a great plus. Children are resilient and understand and accept things much easier than some adults, so don’t feel so down about what you CAN’T do. Focus on whatever small moments you can get a break from some of the pain and fatigue and make the most of those. It’s QUALITY not QUANTITY. It won’t always be as acute or at this level of debilitation. I’ve been there, debilitated, no strength to get out of bed, not even to go to my own breakfast table. But when there’s a break, do something special with your son. He’ll forget all the things you couldn’t do and remember the things you can do. Maybe check with your Dr. about not getting relief from your pain and trying a different med? Or maybe the fatigue is a side effect of a med you are taking and if it’s causing you to be debilitated, maybe try a different med? Keep trying to work with your Dr. to get better relief so you can improve your quality of life. And please do whatever you can to keep the stress and depression under control - with therapy or with meds if necessary. STRESS DOES exacerbate pain and surely it tires us out. I pray that things get better soon for you so you can enjoy what sounds like a lovely family.
Princess,
Totally agree with the above, we know TN is a hurdle everyday, be it the pain or the anxiety the pain may come. And yes, pain drains us. I am so glad your husband is supportive. I also do not have children, but I am the soul caretaker of my disabled husband who is in a wheelchair, had a leg amputated and in kidney failure. So different than a child, but at times he is my big kid :) Don't be hard on yourself and as was said, it is hard but you learn to do this, focus on your accomplishments, I am thrilled if I can brush my teeth! With my hubby I have many have to's that I look back on and wonder how I got through with my own pain, but I do. I have my total melt down days, don't get me wrong, not sure how long you have had TN but after 10 years I have slowly learned to appreciate the moments of pain free. Embrace the love of your son and your hubby, be good to you. It was just a couple months ago I had a terrible day and felt like quitting, I reached out here, and the darkness faded and I was back at it. TN can consume us, depression is understandable, I think we all feel it at some point. Definitely discuss how you are feeling with your Dr. The frustration of wanting to do what we can't is tough, thats why it is so important to focus on what you can do, I have learned this with my experience with my husband, its so easy to get down that at only 52 he is in the shape he is, but he is with me still and he is still the man I love. He has his angry moments that he forgets about my TN, but I have also learned those are short lived moments and for all he has endured he is understanding of my pain. You are still the Mom and wife your family loves. Know we all care very much,
Betsy
I also understand and have tried to learn to just live life each day as it comes! Some days are better and I try hard to do whatever I can to enjoy them but then it seems I have 3 terrible days after that! It almost feels like I get punished for having some fun. I have yet to find meds that help and it can be so discouraging. I think this site will help because I do not feel alone any more. The worst part to me is that people do not understand the disease or why I can not always be involved in activities. One of the doctors I had said I was having headaches! Talk about an understatement! Anyway, I am glad you have a supportive husband and children understand more than we give them credit for. Just explain when "Mommy doesn't feel good and needs a break" and it will start to be normal. I wish you the best and we are here for you!
Hi,
I just wanted to say I am sorry for everything you are going through. I know how much TN pain can get your down and making you feel like you are alone, miserable, and no one understands. If you ever need anyone to talk with, feel free to email. I sent you a friend request. I am not sure if there is a support group in your area, but if so it might help.
I am struggling with chronic pain after a Gamma knife one year ago that produced neuropathic pain and scary numbness. I force myself to do something positive during the day. While I am doing it I am usually in a fog, fumbling and feeling frustrated, but I resolve to get it done. I am so sorry to hear of your stress and depression. Speak to your doctor about it. Best wishes.
I am new to this and I wonder how all these people have managed for years. I have fought for almost a year now and it was only in Feb. that I was told what I had over the phone by a neurologists. I've been denied treatment from so many it really gets depressing. I haven't seen one yet. My os put me on Neurontin after doing a couple of pricks with a needle on my top lip. I asked him to refer me to a neuro which he quickly denied and advised a neurologists couldn't help me. The Neurontin the os prescribed caused more problems than I was willing to accept. I wasn't pain-free, so I just quit them. It's good that you have a supportive husband and someone to help you with your child. For the past two months I feel like my health is declining every day and I don't know how to stop it. The facial zaps I have are very draining and even more depressing to look at. I feel lost and I'm trying to find myself everyday. I was a social butterfly that's had her wings clipped. Taking pills to numb me is not the answer for me especially a health nut. It's my understanding that stress and depression makes our symptoms worse - like it needs any help. I can't get implants and I can't wear particles. With 5 front teeth missing that just only adds to my depression and stress. Ugh, you're not alone, Princess.
Hi Princess, totally understand what you are feeling, I recently had sessions with a psychotherapist and it did help with some of the guilt I was feeling about things my partner and his daughter miss out on due to my condition. We used to go out and about every weekend now if I make it to the supermarket it’s a bonus! If you need to chat send me a friend request xxx
Hi Princess, I like the others who replied understand your frustration, depression and pain. I have been enduring this for more than 6 years. I don’t want to suggest or believe that misery likes company because I wish you didn’t have this pain. My only suggestions besides my prayers is that value your husband who is understanding, hug your son (who does understand more than you realize) and focus on the good and beautiful things in your life. For the last now 7 weeks I have not been able to talk or eat solid food. But I text my 21 year old son everyday and gives me support and my wife shares protein shakes with me. The severe pain will subside, in the mean time place your thoughts else where; like the day you held your son for the first time or when you first fell in love with your husband. It helps trust me. Also remember we who also suffer are here for you. I am a non-sleeper or always up late so if you need someone to communicate too feel free to send me an invite. I will pray for you! HMB
OMG! After reading so many comments I hope I have grasped one that is even close to what I am so far experiencing. I have been having electric shocks on the left side of my face that travel to my brain and make me say, 'please don’t let me die." Now a doctor has suggested I may have tic douloureaux (his term) and wrote it down for me to research----boy, is he spot on! My primary provider (I am under VA care as a UN Navy vet) will be back in his office Mon. & I kind of expect him to refer me to a neurologist but I don’t know how to proceed after that, as the pain is fleeting and I take so many drugs already — but the extreme fatigue that I am experiencing AFTER the “jolts” has me very concerned about my quality of life. I have been told that my fatigue is still a side effect of the radiation I received last year when I had 1)a recurrence of my vulvar cancer from 2008 when I had a radical vulvectomy, 2) a lymph node in the groin w/ cancer, 3) two lumpectomies and finally a mastectomy on the left side and 25 radiation treatments. I have just had $4400. of dental work including two new partials that are driving me nuts ----have been told 6 yrs. on Fosomax is the cuprit that decayed 3 bridges beyond saving. Now the TN, which is on the same side that my aura begins during a migraine episode or that the spots appear before a vertigo attack. I also was oversedated during a routine colonoscopy during my radiation stage and was given a powerful narcotic IV to “bring me back”----my partner was told I was screaming out in pain so they aborted the procedure and then “lost me”. I was a zombie afterwards and have flatlined before surgery before this. Anyone have any ideas for me? I now can feel the place where the jolt will occur all the time and hold my body as to not have it happen but have headache in that area. Thanks for any input anyone can offer. God bless you all.