Ayoung, you are soooo welcome! Thanks for your kind words, welcome to the club, sorry you have to be here, but this is a fabulous group of caring supportive people.
Thanks Cris and Jon, it really is so nice to hear how we all have similar thoughts, feelings.
Cris, I agree we are all here for a reason! I try to remember that, when I’m down.
Saturday night, i was in severe pain. I am lying on the couch with a heating pad wrapped around my face and I can hear my 10 year old son crying in his room.. I ask my husband to go check on him. I can hear him in his room talking to his dad..."I just wish I had it instead of Mom." Broke my heart!!! My sweet, 10 year old boy wants me to feel better so much that he wants to take my pain on for me. Then, this afternoon, I am in bed, in the dark, again in horrendous pain, my 8 year old son comes in crying because mommy is hurting so bad. Talk about guilt. my precious children!!!! As much pain as I am in, my heart hurts more because this disease hurts my children.
((((( Karen )))))
Thanks, Mimi! I sure could use a hug!! Tonight was the worse night I think I have had in a very long time, maybe since all this started. I felt like there was something inside my head trying to get out, in the process ripping out all my teeth.
Blessings to you!
Mimi said:
((((( Karen )))))
@JLT I had that cry til I can’t on Sunday! I think I stood in the shower sobbing with pain(so my hubby) couldn’t hear me. I kept thinking I can’t take/do this anymore it’s just too much!!! After I was out and dressed my husband of course saw my red face and just hugged me. We went to eat and left SEVERAL restaurants d/t the noise ( which was his idea) :). I asked the same thing what if this is as good as it gets …his response was"I took vows and I take hem very seriously". I just thought I was a lucky woman! We had a nice lunch he could tell I was tired we went home I took another nap and that was that. Thank you for posting it does help. 
love to you all, but special hugs go to Karen tonight… sometimes the pain is too much, and it’s clear to me that we can’t do this alone… we need someone to sometimes just hold us, and for us to know they care, when I can’t stand the pain any longer, my husband feels hopeless and asks me what can he do, and I ask him to hold me tight, his arms are a great comfort when nothing else helps… again, sleep well all… Anne
Dear Mimi: I Am not writing to add anything to your heartfelt letter its beautiful and so true just wanted you to know I acknowledge and agree with you on every level. Sending you a gentle hug from someone who truely understands.
Sincerely, W.
so true... the pain .. the unbelieable feeling that this pain can exist and we are in this nighmare...
changing our calm chracther.. to being so less patient with people -thus harming WHOLE we built for our WHOLE life..
everything is true
I agree 100 percent to all the post. I am also new to TN but have had it for about 2 yrs now. I continue to struggle and cope with pain. I use to be a hard worker with 2 jobs. I am no longer able to work 2 jobs and to make things worst I returned to school full time and work 50-60 hrs per week. I am not sure how long I will be able to do this. So I am rushing through school barely passing and struggling to keep up. I recently had an attack and went to the emergency rm begging for a heating pad while I was sitting there but the hospital was unable to provide me with one. The only thing I could do as sit and hold my face and continuosly ask the person at the front desk how long will it take before I could be seen. My blood pressure escalates to 250 over 133 and it is diffulcult to return to normal as long as I am in pain. I have lost 5 lbs within the last two weeks, "which is a good thing", because I just dont want to eat. The gabapentin, dont work and the pain killers dont work. I just became eligible for insurance at my job so I will see what I can do or get done. I am not fond of pills and cannot see myself taking medication for the rest of my life, becasue I know I will not take them. I am looking into the surgery. CAN ANYONE RECOMMEND THE BEST WAY TO GO? I am desperately seeking an alternative to the pain or seeking to resolve it. I am afraid that I may overdose on pain pills accidentally, trying to relieve it and going to the hospital is only for stronger meds to make it through the day. My pain usually last about two to three weekssome days worst than others.
As I sit here, reflecting on your post, my eyes are filled with tears. I feel so many emotions related to my illness, but the strongest one of late is genuine sadness. This has had a terrible effect who I am; or who I was, rather.
My husband is lovely and my family supportive, but I honestly don't know that I can picture the rest of my life feeling like I do.
The physical pain is but a drop in the bucket when thinking about the psychological effects. How do you make peace with the fact that you may never be the way you were? I would love some advice, here.
I sound like a whiny baby, but I can not always "put on a happy face".
Thank you, Mimi for putting into words what a great many of us feel every day.
Christine
Thankyou all so much for your replies, I’ve read every one.
Toni, you need to find yourself a doctor and/or neurologist to be your partner in this.
Without the support of a medical professional the journey is more difficult.
I’m not going to lie, it takes time but when you find the right one you’ll know.
Educate yourself as much as you can about TN, and be prepared to advocate for yourself.
No one should have to suffer in pain like we do.
It takes time to find the right combo of meds, but in my experience we need to be on meds initially so that we can make clear desicions on what the next step may be. The side effects suck! But the pain sucks more!
On this forum there are many people who have experienced remission, pain free for months due to meds, alternative therapies and surgical procedures.
We must learn from each other.
Christine, answer to your question… One day at a time, together.
And HOPE for better days ahead…We need to hold on to hope.
PS. I couldn’t find my happy face today either…let’s hope tomorrow I’ll stumble across it.
And I wish the same for you!
.((( hugs )))
My grandma always said..."what doesnt' kill you makes you stronger". It is difficult to realize we are now "different people" but perhaps we will end up being "better' people. I know for one I am much more empathetic to people today. I am a caregiving nurturing person. it has been very difficult for me to allow others to be that for me, but...I have come to love them and appreciate them more. I have had the opportunity to experience how much I am loved by the
support I am being shown. These may not seem like big things in light of what we go through, but I do believe in trying to look for the silver lining in all that happens to me. I am not the same women I was before TN ...I can only hope as I live through this I will be a better person for it. Hugs to everyone and hope that tomorrow will be a brighter day.
Christine P. said:
As I sit here, reflecting on your post, my eyes are filled with tears. I feel so many emotions related to my illness, but the strongest one of late is genuine sadness. This has had a terrible effect who I am; or who I was, rather.
My husband is lovely and my family supportive, but I honestly don't know that I can picture the rest of my life feeling like I do.
The physical pain is but a drop in the bucket when thinking about the psychological effects. How do you make peace with the fact that you may never be the way you were? I would love some advice, here.
I sound like a whiny baby, but I can not always "put on a happy face".
Thank you, Mimi for putting into words what a great many of us feel every day.
Christine
Mimi,
Thank you for the kindness. I am sending you hugs and more happy faces.
Christine
Mimi said:
Thankyou all so much for your replies, I've read every one.
Toni, you need to find yourself a doctor and/or neurologist to be your partner in this.
Without the support of a medical professional the journey is more difficult.
I'm not going to lie, it takes time but when you find the right one you'll know.
Educate yourself as much as you can about TN, and be prepared to advocate for yourself.
No one should have to suffer in pain like we do.
It takes time to find the right combo of meds, but in my experience we need to be on meds initially so that we can make clear desicions on what the next step may be. The side effects suck! But the pain sucks more!
On this forum there are many people who have experienced remission, pain free for months due to meds, alternative therapies and surgical procedures.
We must learn from each other.
Christine, answer to your question... One day at a time, together.
And HOPE for better days ahead....We need to hold on to hope.
PS. I couldn't find my happy face today either....let's hope tomorrow I'll stumble across it.
And I wish the same for you!
.((( hugs )))
Yvonne,
I hope I can find the strength your grandma instilled in you. I don't know how to cope sometimes.
Since I push my pain and feelings down about 80 percent of the time, it is rough when I let them come up.
I hope you are feeling good today and every day and appreciate your support.
Christine
Yvonne said:
My grandma always said..."what doesnt' kill you makes you stronger". It is difficult to realize we are now "different people" but perhaps we will end up being "better' people. I know for one I am much more empathetic to people today. I am a caregiving nurturing person. it has been very difficult for me to allow others to be that for me, but...I have come to love them and appreciate them more. I have had the opportunity to experience how much I am loved by the
support I am being shown. These may not seem like big things in light of what we go through, but I do believe in trying to look for the silver lining in all that happens to me. I am not the same women I was before TN ...I can only hope as I live through this I will be a better person for it. Hugs to everyone and hope that tomorrow will be a brighter day.
Christine P. said:As I sit here, reflecting on your post, my eyes are filled with tears. I feel so many emotions related to my illness, but the strongest one of late is genuine sadness. This has had a terrible effect who I am; or who I was, rather.
My husband is lovely and my family supportive, but I honestly don't know that I can picture the rest of my life feeling like I do.
The physical pain is but a drop in the bucket when thinking about the psychological effects. How do you make peace with the fact that you may never be the way you were? I would love some advice, here.
I sound like a whiny baby, but I can not always "put on a happy face".
Thank you, Mimi for putting into words what a great many of us feel every day.
Christine
hi christine, i can so relate as im sure most of us can about greiving the loss of who we were. i have been told it is equivalent to loosing a loved one and we have to go through the same process as that of a death, the death of who we used to be. there will be anger, questioning why me, grief, denial, acceptance eventually, but that will be a hard one i think. because we do have moments of remission when we think we might be better and we are able to do some of the things we used to do. we try to cram so many things into that time to make up for lost time and then the monster rears its ugly head again and we have to start the process all over again. i personally have many pity parties then pick my self up and do my best with what i have. i hold things in and put on a happy face so often that it just bursts out of me and i feel like i cant take it anymore. strangely i always feel better after my blowup and i seem to cope better for a while. at least until my next rupture. i am trying to enjoy something about everyday instead of focussing on the whole big sad reality. i would say we should allow ourselves our grief but dont get swallowed up by it. we should try to surround ourselves by possitive people. easier said than done given that most people seem to run the other way with uncomfortableness and a lack of understanding. it takes a certain kind of person to be able to support someone who is struggling with health issues and depression. at times we are not that fun to be around, understandabley so. i try to use humour often. i was always a silly joking around kind of person so i try to find humour in the moments when you wouldnt think there would be any. for instance when i have been out with my face and head all wrapped up you can barely see my eyes i have gotten some funny responses. one man asked if i had some work done and i said yes i had my nose made really big. i always wanted a really big nose and i walked away chuckling to myself. another time a man asked if i was a muslim lady and i just nodded but didnt speak. there is no point in trying to explain to most people especially strangers, so i dont waste my breath. its not easy to see the humour in our situation but when i can its pretty funny in that moment. we really need to laugh, and often. even though it probably hurts most of us when we do. OMG, look at me rambling. can you tell i spend the majority of my time at home alone? ive become one of those people that people would see and hide from because they cant get us to shut up. LOL. there, another opportunity i just made fun of myself about something that on another day would make me cry. all i know is that we are in for the challenge of our lives and everyday we will have to fight to rise to the occasion. hang in there Christine, we are all with you. take one day, one hour, one minute at a time. sincerely, Jacqueline
Christine P. said:
As I sit here, reflecting on your post, my eyes are filled with tears. I feel so many emotions related to my illness, but the strongest one of late is genuine sadness. This has had a terrible effect who I am; or who I was, rather.
My husband is lovely and my family supportive, but I honestly don't know that I can picture the rest of my life feeling like I do.
The physical pain is but a drop in the bucket when thinking about the psychological effects. How do you make peace with the fact that you may never be the way you were? I would love some advice, here.
I sound like a whiny baby, but I can not always "put on a happy face".
Thank you, Mimi for putting into words what a great many of us feel every day.
Christine
Omg Jacqueline, thanks or the laugh this morning!
As you know I have been homebound for almost a year.
A few months ago I was in the grocery store and at one point I caught myself having a conversation with MYSELF while shopping, a full out loud conversation! 
I actually checked up and down the aisle to see if anyone had heard me!
Then…at the cash I became THAT person, I chatted the poor cashiers ear off!!
I wouldn’t shut up!
Oh my…made me laugh, thank you. I needed that, it’s been a rough 24 hrs.
Mimi
Mimi, its like i was listening to my heart's pain when i was reading your post. Thank you for sharing. My heart bleeds for your little girl as i to have a 13 year old boy and as supportive as he is, he misses his 'real mummy' too.
Jacqueline,
Thank you for your post! I love your reponses and your attitude. it is a "take as they come" good days. I had one thursday as I worked 8hrs for the first time in 2 month. A wonderful friend and coworker (who suffered with Shingles all summer and knows a little of what we go through) insisted on driving me around to my stores. As we left the last one I told her, "I am glad you drove me because right now my head feels like I have been on a 3 day drunk!" We both laughed, but we both realized it really isn't funny. Yesterday, I paid for my long work day and spent most of the day on pain meds in bed. This morning I awoke feeling better and the sun is shining. I hope and pray to spend a good day with my loving hubby!
I, at this point, don't see me able to keep my job. Too much stress, responsibility, and driving,with the meds I take. I will continue to try for a while but ...I am also looking into part time less stressful jobs I might enjoy as i make the transition.
Thank you for sharing your wonderful sense of humor (along with ideas for future responses)! And for reminding us to continue to enjoy the GOOD DAYS and realize grieving is a very naatural part of our learning to move on with the new us.
Hugs,
Yvonne
That ks EXACTLY how i feel...all i can do is isolate myself because i don't know who i am anymore and i hate to see the pain in my family's eyes. I cant even hide it, as soon as my mom looks at me she knows if im having an attack or not...i feel like im letting her down, she doesn't know how to help me other then to say time for your meds ...or shell ask if there's anything she can do, and as much as i wish i could say yes, there's not...i usually just say just keep doing what your doing because your support is all i have. I don't want to even talk to my best friends about it anymore bc im afraid they'll get sick and tired of hearing me complain...so i will stay quite... :(
Hi JLT,
I am sorry you are going through this, and i truly know first hand what "this" is. But your story provided me with hope and made me smile (something i havent done in awhile). The love and support you described your husband and son showed you made my heart smile as well. God Bless you all :)
JLT said:
Great Story Mimi. I need to read this, this morning. I have had a horrible few days. I've cried until I can't cry anymore. Asking...why me? I woke up this morning and told myself...God isn't going to put me through more than I can handle. He knew I could handle this and that is why he chose me.
KC Dancer KC....I asked my husband yesterday (of 2 years) why would you want to deal with this the rest of your life? He said "when I said I do, it was for the good and the bad" That made the entire day worth it. Me, him, and our son (I adopted his son) laid in bed last night and we watched videos and read articles on TN. I want them to know about it. Our son just laid there and hugged me and kept telling me he loved me. Life may be horrible some days...it just doesn't get any better than that, though!