I hate admitting that I need help or that I am feeling depressed but I gotta be honest with myself and I am tired, sad, worn out emotionally and I truly feel as though I don't know how I am gonna make it all of this pain for the rest of my life. I am on year 3 of my TN journey and I just don't know how I am gonna do this. I hurt more every day it seems and nothing makes it better. I have had MVD, Radiofrequency Rhizotomy and tried meds...nothing helps. I actually gained more pain and issues from both procedures. I got TMJ from the MVD and I have lost feeling on the left side of my face, including inside my mouth, from the RR but I still feel the intense pains...I am so over all of this. I am suppose to go to a new neurosurgeon this week but even though we finally have health insurance again, I can't afford the copay right now...how does everyone get through all of this? How do you all deal with it on a daily basis? Do you ever feel like you just can't do it...no matter how much you know have to fight and stay strong...does anyone feel like they just can't do it? I do...more and more and I know I want to be here for my kids and my husband but sometimes I feel like my being here isn't a good thing for them because I am so very different than who I was before all of this...I am a different wife, mom, daughter, everything...how do I survive this? I am sorry to sound so whiny...I am just at my limit...I can take no more stress, no more pain...I need to find peace or I am gonna fall apart.
I am willing to hear and take all opinions....this site is a God send...when I come on here and look around it is the ONLY time I don't feel alone in this battle...thank you all.
((( hugs )))
I’m so sorry .
I understand. I truly understand.
It gets overwhelmingly difficult at times, and I was just telling my husband last night how sorry I was for not being who I used to be, for how much this friggin TN has affected our lives and my daughters lives as well. I hate that this affects all of them too. I truly hate it. Oh, I could go on and on and vent right along with you, I know you’d understand. That helps alot.
We need to gain strength and hope from one another that better days are ahead …
I try to journal and I meditate.
Right now I’m having horrid breakthrough pain so meditating hasn’t been happening lately, but I do find it helps to clear my head and brings me a little peace when I’m able to do it.
I have a gratitude journal , I must be honest and say there are many days when I can’t write in it, but the days that I do remind me of many things I have to be grateful for.
Just know I’m thinking of you and sending you strength to get through another day!
Sending blessings and prayers your way. I have had mine for over 30 years. More procedures than I can count, most made pain worse. Hang in there and know you are stronger than you know. Have you tried talk therapy ? Someone outside your family to talk to.
it is so tough to be in pain with no end in sight. I hope you can continue to find strength and support through this challenging time and find someone who can listen really well to how you are feeling.
Take care and stay hopeful for some relief from the pain.
how i feel for you. i am the same. i am no longer the same person, i have put on weight, the recent crisis i had has had the Dr increase my drugs and i and drowsy all day. how can i be useful like that. my neuro has me on the highest drugs she has ever known, she has only seen it in books. this year going for gamma knife surgery in london so i pray. cant understand why they cant find a drug to stop PAIN
I am actually Thad’s wife commenting on his behalf. I’m sorry for all of you who feel double pain knowing you are “not the same” wife, husband. When we said our wedding vows, we said “in sickness or in health.” I for one meant that with all my heart. Nothing makes me feel worse than knowing how your pain is so bad. I search for answers and for help everyday… and I will not give up. Until death do us part. Praying for all of you and hoping you have an understanding, compassionate spouse. There are and will continue to be rough days… but know you are not alone. My husband has had this for 4 years and God has strengthened us and provided help and comfort during low, low times. Have you heard of the procedure with wires under your facial skin and a device similar to a pace maker? We’ve been told it’s very successful.
Kimkow, it is so upsetting to read how sad you are and how difficult things are for you. I actually had to put my laptop down and then come back to it again later. I understand how you feel and the horrible sense of loss and kind of a mourning for who you were before this happened to you. I have been going through the same thing. I don't know if I would say that I have been depressed, but I do think that when we have something like this that we do go through the stages of loss. I think I am still really in the angry stage and mourning the loss of 'me'. It was nice to hear from Thad's wife, but I would love to hear from some husbands and friends. I feel like I am constantly complaining and unable to do what I used to do. I have fibromyalgia too so I really do feel like I moan all the time. What do we do, lie when someone says how are you? I hope you can find the right medication to give you some of your life back. Focus on what makes you feel good and do some of the stuff that you used to enjoy.
I hear u 100%!!!! I too wonder sometimes how I am going to keep going. I've had an MVD (failed after 2 f'n weeks! and a Glycerol Rhizotomy which lasted longer. For the past month of so I have been having pain on the left side but not the "BIG ONE". I am on Tegretol(hate it) and Neurontin. The scary thing is the waiting...cause you know it's going to come eventually. At times I wish I would just die. The only time I don't have pain is when I sleep. I've done several self-harm things to myself when I was having the big pain. One was hitting my face for what seemed like forever with a television remote control. My face ended up all bruised from top to bottom on the left side. I just wanted to feel ANY pain other than the TN pain. I seriously don't know how people cope with this for a lifetime. I have just about had it. I believe I started somewhere around 2000. Not even sure of the exact date...strange huh? Anyway, it was always off and on. I would go a few years without ANY pain and then WHAM!! Out of the blue!! Sometimes I was SO embarrassed because I would scream out in pain and usually curl up in a ball. I've also been brought to my knees because of the pain!!! WHY CAN'T THEY JUST FIND A FIX FOR THIS??? I just don't understand. I would even be okay with having all the nerves on the left side of my face totally GONE if that's what it takes. I don't give a rat's ass if my face droops or whatever.........I WANT TO NEVER HAVE THIS PAIN AGAIN!!
Oh baby how I understand! Chief neuro told me i have no surgical options and am on medications that make me stupid! If you will hang in there I will too! I have to learn to meditate but I want to cry. I want to be a good wife and mother but I just cant do it from lying in the bed on the heating pad. Meds make u gain weight plus you feel like a slug. Hang in there and I will be your prayer partner! HUGS
I cannot begin to tell you how much each of your comments mean to me...as much as I hate that you all are going through this terrible pain, it brings comfort in knowing I am not alone...none of us are alone. Thank you, thank you all for helping me to get past this low point. I am trying so hard to stay upbeat for my children, my husband and there are just so many days lately that I don't even want to get out of bed. You all help me put one foot in front of the other and without you all I would be lost. I hope to chat with each of you more in the future. Bless each of you and you are all in my thoughts and prayers. Much love to you all
Morning all, it's 6am, I've had to get up early as I can't sleep as when I breath in the air on my teeth is causing me so much pain. I have been awake off an on all night. I think I start at 3am. I suppose that is when it get colder. Our house is not particularly cold. It is double glazed and new. But, it doesn't seem to matter. I've tried rolling over so my head is in my pillow, putting the sheet over my mouth, breathing through my nose which is a bit difficult, I don't seem to get enough air. Any ideas anyone? I've given up and sneaked out, made a Milo (heard of that anyone?) taken some drugs and reading the junk mail! One of my favourite passtimes. Not sure where to go now. Finding it hard too at the moment. Teaching is hard as I have to talk all day. I may have a referral to a chronic pain project and my chiropractor is doing a little research for me. I am going to go a brainstorm with my dentist too. But, like the rest of you, I just wish it would go away!
Okay…so my new family practice doctor sent me to a new neurosurgeon for a surgical opinion. He feels the only thing left is gamma knife and because I have Atypical TN and that the MVD and rhizotomy didn’t do anything to ease the pain at all that there is a slim to no chance of it working…10% or less chance. Not worth it to me…not for that low of an odd. So I go back to the GP today and flat out told her that this is going to life and I am learning to deal with it all but that I need a break from the pain…even just a week or a few days. She first told me that I am a mom and she is hesitant to see me take pain meds…then she says she cannot even prescribe pain meds. She then gave me a prescription for amitriptyline…old school anti-depressents that are used some for chronic pain. She told me that she could refer me to a neurologist but she would wait…I told her to refer me so I could at least get the appointment on the book if needed. I then asked her to refer me to a doctor that could help with the TMJ I developed from my MVD…that I knew that the TMJ wasn’t the cause of all the pain but even if it was just contributing to it all 10-20% of the pain then that was 10-20% that I could get rid of. She said no…that it was going to come back to TN pain…I agree that 80-90% of the pain is TN but I do have TMJ. I only have less than two inches between the bottom of my top teeth to the top of my bottom teeth. I can’t eat sandwiches, bananas, lollipops, ice pops…chewing is next to impossible and embarrassing…kissing my husband hurts and other things (wink, wink) are impossible too. Why would she not want to fix the TMJ just to fix one thing on me that is broken??? I don’t know what to do…I do not want the gamma knife and I am not sure about the amitripyline is just one more medication that seems to me that is meant to cover up the crap in life, not help it or relieve any of the pain. Aaaahhh!!! I swear…every single one of us deserves a spot in heaven/paradise one of the days. This is awful and I am so tired of dealing with all of this…I just want/need a few days of peace…why don’t they want to provide this for their patients?? How the heck do people get hooked on pain meds??? I can’t get anyone to prescribe any to me…this is insane.
Whew…venting is done…thank you all again for listening!!! I would be lost without having you guys to chat with…it feels so lonely. God Bless you all!!
LAS...I just saw your post tonight and I am sorry I didn't see until now. I sleep holding on to a heating pad...one of the ones that turns itself off after 2 hours but it helps me battle the cold from my ice packs. I have to get new ones every 6 or so months but it is well worth it. I hope you find something to help you out! God Bless.