Suzanne,
There is always a reason to keep going…sometimes though those reasons aren’t clear …but they are there. I found a quote today that really spoke to me, its from Viktor Frankl’s book “Mans search for meaning”
" He who has a why to live for can bear almost any how"
You need to get a hold of your son and be with him. That’s possibly your why…
You need to get away from the negativity at home and spend some time remembering that YOU are NOT useless.
I know how this pain/condition wears us down, it changes our lives, Viktor Frankl survived the concentration camps in world war 2, and this book inspires us to find significance in the very act of living.
Please reach out for help, if not to friends and family then call a suicide prevention line, let them help you .
Don’t be sorry for feeling this way, I understand, but please,please find someone to talk too.
We can get through this together.
I’m thinking of you and praying you remember that nothing is worth losing your life over, nothing. You have so much to live for.
Please message me if you’d like to talk more, I can call you if you’d prefer.
((( hugs ))) Mimi
Does Your TN Pain Have You Considering Suicide?
First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK
for members in the United States, or for international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.
Suzanne, I probably do not have the right words but despite my muddled writing i hope that i can convey to you how important you are and that we are here to support you.
Mimi has expressed things much better than I ever could but please reach out to someone that can help you. Do you have someone that you trust, a friend or maybe your family doctor that can assist you getting additional help?
I do not know what you have endured but i do know that pain changes who we are and it can make it so hard to remain positive about the future. Please keep posting, we want to help.
Hugs
Trish
Please
Suzanne,
You do have a reason and purpose! God has us all here for a reason! I know what the pain can do to you, I am 2 week out after having my 1st MVD I don’t know what it has and has not helped:-/ I don’t have the same pain in my left side anymore but my right side is firing now. I woke up this morning and am having some strange pain that I’m going to call my dr about when it’s 8am here. I have 5 kids and a hubby and a full time job, sometimes it feels almost impossible to push thru! I don’t know if these words will help you any or not, I pray they do! 2 weeks ago they rolled me into the OR and I thought I was so prepared for everything getting ready to be done. Then they rolled me into the room and I saw all these ppl and I wasn’t expecting that! So I stopped and thought if somehow I don’t make it off this table what will others rem of me? I didn’t like what I saw of me. I decided no matter what happens I will make a change! You can’t control what your husband or kids or family or friends or anyone else’s perception is but you can control you. You can make a choice weather in pain or not to be the amazing beautiful person you are created to be! We love you! I know that’s a lot to take in to think this person who doesn’t know me says she loves me. Your prob thinking whatever that I’m full of it, and that’s ok you don’t have to trust me you have been hurt so much in so many ways but I do love you!! My heart hurts for you!!! If you want my # just for someone to text and talk to its yours!!! I do care for you and I do want you here on this earth and I do want to help you so please please please don’t give up!!! Please let us show you love!!!
Sarah
XOXOXO
This is so sad…mostly because I understand…
The above replies say things so well...please get help. I have felt like you are with the pain, like I can't go on...but there is a reason to. Please do not let your hubby drag you down, he has no clue and obviously is not understanding and sure does no have the right to keep you from your son. Please reach out to church or therapy or the hotline, and all of us that deeply understand. Depression is real with TN. My hubby is disabled at 52, in a wheelchair, on dialysis, leg amputated...and yes, I do have days where I have major pity parties and wonder if I can go on. But I do. I totally understand too about your beloved dog, I have 3 dogs and 4 cats and they keep me going so the thought if losing your bestfriend hurts, there will never be another like your dog. We can never replace our pets, but I do believe we can find fur love again. Your dog will wait for you at Rainbow Bridge, but not now, your dog would want you to go on and your son does and we all do and care. As stated, please feel free to e-mail me anytime or I can give you my number. I love my pets more than words could say, we can talk about that too....Sending you gentle hugs and love. And Brian, I hope you are okay....
I am sorry for my meltdown. I think I just lost it after trying to pretend for so long that everything is okay. Everyone here is dealing with pain, I feel like a jerk for being so full of self-pity. I really don't have it so bad. I just have trouble feeling positive anymore. I'll get through this. Thank you for all your kind words
I usually lurk but joined up on this forum just to add a comment to you Suzanne, but I had to wait till I could post. I am so glad you are doing a little better. I know I feel really really down a lot of the time, but dont give up. You shouldnt feel like a jerk for letting us know how you were feeling, nothing wrong with that!
Suzanne Marriott said:
I am sorry for my meltdown. I think I just lost it after trying to pretend for so long that everything is okay. Everyone here is dealing with pain, I feel like a jerk for being so full of self-pity. I really don't have it so bad. I just have trouble feeling positive anymore. I'll get through this. Thank you for all your kind words
Hi Suzanne,
Please don’t apologise for your feelings, they are very real and we are the very people who understand and know some of what you experience daily. This is the place where we can be honest when it all seems like we just can’t stand it anymore, I am grateful that we all have a safe place to say what we really think.
Even if you are feeling a little better now it is still important to seek out help, you have a lot to deal with and at times we all need assistant to find a way to see a future.
I am clueless as to the medical options available to you but I hope you can find something that will work for you, please don’t give up.
We are here for you and if I lived near you we could catch up in person, I talk much more coherently than I can write, these days.
I am so sorry that you are losing your precious dog, I know how that feels and it is so painful to be losing your best friend. I lost my dog two years ago and still miss my quasar, they just know how to put a smile on a broken face.
Sending you gentle healing hugs
Be kind to you
Hugs
Trish
Suzanne, so glad to hear from you, we all know how hard this life can be.
It’s not just the physical pain, the emotional pain and consequences are very real.
For the past year and a half my dog Roxy has been my constant companion, the only one who truly knows, the tears and madness. She just knows when I’m not well,and her companionship has maintained what’s left of my sanity! So I’m so sorry to hear of your dogs’health,
Thinking of you, (( hugs )) Mimi
Suzanne, I don't fully know your situation and I'm fairly new here but I too am thinking of you and wishing you some comfort. It WILL come! I pray the kind words others have written here help. Please reach out and find the changes you need to make to get through this. ((hugs)) like Mimi's :)
Suzanne, so glad for the sound of hope in your new post. That is all it takes is just a glimmer of hope to be able to reach out to others. A good place to start might be to call the Billy Graham association as they have counselors ready to talk to people at all times. 1-877-■■■■■■■■. Just thought it might help to talk to a "live voice". It is hard to remember, but is true that our emotions follow our thoughts, and if we can just get our thoughts headed in a safe direction, our emotions can rest and begin to heal. Praying for you now. Would love to talk with you, email or phone. Jo Ann
Sometimes an antidepressant - the right one --- or a therapist - the right one - or a pain management clinic can be of new hope.
It's a crazy disease - not a crazy victim!
Sometimes a second MVD has made things better -- Like Mimis Story!
Have you had topical meds like lidocaine patch or lidocaine/ketamine cream - both prescription.
I am glad you are back on site. Though I have never met you or corresponded with you I was immediately scared and worried for you. We all suffer and can understand your pain from TN. While our circumstances may vary in our homelifes we have a strong and unifying bond thru TN. When one suffers we all suffer. You are not alone, we all care so much. Hugs and strength
I have health insurance through Kaiser Permanente. I have lost count of how many different doctors I have seen. They started me on Tegretol initially, but I'm severely allergic and ended up in the ER with blisters and swollen tongue. I've tried other anti-convulsants; Topamax was horrible and the others didn't help. I take 1 generic Paxil antidepressant a day. I have asked the Dr. for something different, I even brought in a list of the most commonly prescribed meds for TN. She said the Paxil should be strong enough. Right now, the only thing I take for pain is Advil. I would really like to try the Lidocaine patch. I mentioned this to my GP, a neurologist, and a neurosurgeon. They assured me that couldn't possibly help, so another "no". If I know I am going to be in a cold draft, I put Ambesol numbing liquid on my face, and YES, it helps. I had an MVD 3 years ago which worked for several months until the pain gradually came back. I don't think it is as bad as it was before surgery, but it is getting there. I just had an MRI which didn't show any arteries against the nerve, or any obvious reason for the pain. The neurosurgeon smiled and told me that sometimes they never find a cause. He suggested I go back to the surgeon who did the MVD 3 years ago. I know I should, but I don't know if I can go through that again.
Kc Dancer Kc said:
Sometimes an antidepressant - the right one --- or a therapist - the right one - or a pain management clinic can be of new hope.
It's a crazy disease - not a crazy victim!
Sometimes a second MVD has made things better -- Like Mimis Story!
Have you had topical meds like lidocaine patch or lidocaine/ketamine cream - both prescription.
You need to fire all your doctors. !!! Of course the patch works I found it here not from a doctors idea!! Go to groups tab…there is a topical relief
Group there…
.I don’t care if you have to ask your dentist…relief can be right there! Why on earth would they refuse to call in a NON NARCOTIC??? You cannot be passive with this disease…don’t take no for an answer…these people are directly wrong…there is an antidepressant or two that Also
Work on TN pain
! Amnitriptilyne…wrong spelling…but look it up here. And it’s cousin noramtripilyne…also wrong spelling…can you get new GP and new neuro?
Have you readour guide…Striking Back by Ken Casey? Many many combo meds and treatments. He did my MVD and does many second ones…he’s been doing them since 1970s…
I don’t mean to sound brash…I’m mad for you at a system that is mistreating you.
not to mention unethical.
I hope you will let us help you find the courage, strength and correct resources here.
Kimberly
Suzanne, I agree with KC, also…my MRIs never showed compression, I had several MRIs over the 11 yrs I had TN. During my recent MVD my NS found 3 blood vessels compressing my nerve!
I was able to get a lidocaine mixed cream called Emla that worked amazingly!
I hope you are able to find a new doctor who can fight for you!
Mimi xx