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1

For the first 2-3 minutes of this morning I was happy. Laying in bed stretching and cuddling pillows. Then I slowly woke up and began to relive the events of the past few months. So I began to cry. This wasn't a one or 2 tears ordeal. this was an ugly cry, snot bubbles and all. Since being diagnosed I've put on a brave face. I've gone to work to my own detriment. I've dealt with a neurologist who saw me as an unfortunate annoyance. Someone to ignore. I can't count the amount of times I've called her in tears begging for help to be completely ignored.

I've dealt with co-workers asking why I don't just go on disability, making blatant fun of me and forcing me to do tasks out of my scope that triggers my TN.

But none of that compares to what I'm facing now.

I love my family. I really do. But this is just unbelievable.

For the past 4 days I've cried almost non stop. Some days I feel so isolated. I wish there was a way to make them understand. Or to make them chose to understand.

I've asked my immediate family to read sections of striking back. Not going to happen, the books been here for a month and not a single page has been read.

At the height of my worst attacks I was told to "Work through the pain", and to "stop being so lazy".

Now these are the medications and dosages that I'm on :

Carbamazipine: 400 mg x twice a day

Lyrica: 300 mg x twice a day

Baclofen 15mg x 3 a day.

But I'm supposed to fight through it. Fight through the complete disconnect between my thoughts and the expression of them, Fight through the inability to focus on anything longer then 30 seconds. Fight through the nausea, the delayed cognition and being constantly high out of my gord.

At my former job I had customers call me stupid, and other workers tell me that work isn't a place for "recreational" drug users.

FIGHT THROUGH IT.

I fought for my surgical referral. I've finally gotten it. I spoke to the Drs nurse and we are getting the wheels going.

I was thrilled. I still am in a way. Finally I can take a break from fighting all the time. Finally I have a shot at going back to school and opening up a start up.

My family took to it well it seemed. My mother was all tears at first. "I don't want someone messing around inside of your skull." So we talked. I showed her literature to support my choice. I lead her to online resources.

The conversation has always led to the conclusion that she would be the one to go with me to surgery. No questions asked.

Yesterday I was home with her new(ish) husband. I like the guy, he makes her happy and seems to be very intelligent in some ways. I brought up the 2 or 3 issues I was having in terms of planning and his response:

"GO BY YOURSELF". you don't need anyone there, Its not like a major surgery.

I thought he was joking. Nope. I brought it up to my mother some hours later. her response was the same. She would no longer come with and I should just "Man up" and go by myself.

Something inside of me finally just broke and I spent the entire evening in tears. I was told to get out and so I'm looking for flights back to "where I came from".

I have never felt this alone, depressed and hurt in my entire life.

I guess I'll just have to keep fighting...

2

Amlee...TN is a very very lonely disease because no one other then a fellow TN patient can even come close to realizing the pain and the loneliness that TN causes. When I started my journey with TN 38 yrs ago there were no books to read,,,no websites to visit and no one I could talk with who was going through the same thing. In fact it took 8 yrs to diagnose what I had. .Fortunately for you though you do have those things at your disposal and on this website you have people who care and understand. What I did have was family support and especially my wife who suffered with me for 8 years. . I cant imagine any mother turning away from their child in time of need but seems you have to finish this journey without her. Do you have any close friends that understand what you are going through and who care? Here is the good news. You are young and have your whole life ahead of you. This may seem like an impossible time in your life but it will pass and you will be a stronger person for it. Just make sure you have a high quality neurosurgeon with extensive TN experience. Somewhere in the near future I pray that you will look back on this as a pain free person and .someone who overcame great adversity. You can do it and you can have that wonderful life that you deserve....Good luck and god bless

3

Very well said Ed! I too, have had great support from my wife and family and she was there by my side and my best nurse thru the mvd surgery. I am pain free now and there is great hope in this for you. Life has challenges and this was my greatest challenge in 60 years of living. To go thru the surgery and come out on the other side has made me proud of what I have done. I would have done it the same way with or without support and you need to move forward too, stronger when you come out on the other side. My thoughts and prayers go out to you. You have a family here that know better than anyone what TN means. We support you all the way!!!

Jay from North Idaho

4

I am soooo sorry Amlee. I know the pain too of a mother that can be very cruel. I know it doesn't seem like it, but deep down I think your mom does love you, but she is just being influenced by this guy right now. But yes, my mom did something similar to me, sided with my brother and basically abandoned me and I cried hysterically for 4 hrs straight. Hopefully one day she will realize how much she has hurt you and she will regret it, as for now continue to seek out the support you deserve and I pray this surgery that is in your future is your ticket back to a normal life again.

5

Thank you all so much for the kind words. It means a lot to know that somewhere out there people care and understand. Things have gotten a bit better. I left my job for one with a compassionate understanding staff. My mother isn’t typically very cruel I’ve just found that over the past few months she’s been lacking in empathy when it comes to my health issues. She doesn’t seem to trust in my own boundaries/understanding and it’s just simply infuriating that she’s not willing to educate herself. At first she claimed surgery was too dangerous for me, then it was about finances (the other trip), then it moved to how she’d have no support system out there and now it’s because my neuro wanted me to go to a surgeon who according to her had performed the surgery at least “5” Times, which I flat out refused. I’m not sure if her various concerns are really just her process for coping with this or if I am really going to have to do this alone. If I am I know now that I will have to be strong enough to do it. That being said It’s a great comfort to know that I am not alone and I appreciate the advice and insight.

6

Excuse my language, but WHAT. THE. HELL???? That is just terrible! I am so sorry that you don't have the support you need. Do you have a friend who can go with you and stay with you afterwards? Sometimes it makes you wish that everyone could have TN for just ONE DAY so they could see how it feels and then they would know. I am glad that my family supports me. I don't know if my parents, brother and sister fully "get" how painful this can be because they have never seen me during my severe episodes. My husband and children have, so they know. And my boss has even seen me during some episodes. Poor thing didn't know what to do except just give me a hug that he thought I needed. I will pray very hard that your mom comes around, but if she doesn't, just do it alone and I wouldn't even call them to tell them how I am doing. Make them get worried and call you themselves. Sometimes I just want to shake people until they get it, LOL!

7

wow.

im so sorry to hear that your family is like that. the pain is UNREAL. here is a story you can tell them. i was doing a re-imagining of a firestone store in hemet california. it was near the end, i was the electrician. one of the things left to do was to put a power pole in the last kiosk. it was a ten foot long 4 inch aluminum tube with a divider to keep the data cables and the power separated, so i guess it was 15 pounds? anyway the carpenters glued the counter top with a predilled hole just a bit off center so when i cut the hole in the ceiling tile and tried to slide the tube down in to the cabinet it got stuck about one foot in, so like a dumb ass, i pulled as hard as i could down on the thing, not realizing my hand was directly below the tube. when the counter shifted ( the glue was not set yet) the tube came down, me pulling very hard and hit my thumb. the cut went to the bone under the nail, just above the joint and was half way around. i clamped down on it , held it over my head and ran out side, new flooring and pinat so the blood would have really screwed things up, plus they were open so customers and what not. took me about 30 minutes to get the bleeding to slow down. i borrowed so blue latex gloves off the mechanics and put two of them on that hand to the blood off the surfaces, and worked for another 45 minutes before i went to the dr, so the data guys could finish there work and the store could open all the way...but when tn struck, if i was standing, i could not walk or sit, if i was sitting, i could not stand, i could not turn my head even...i have never experienced anything like that. i swear if you inject gasoline under the skin in my cheek and hit it with a blow torch till it exploded, it could not hurt any worse,,,well for me anyway, but im sort of a whimp. i dont know if i have any pics of it, but i will look and post it so you can show you father inlaw and he can get some perspective on this.

8

well i could not find the thumb, but here is one when i hit my little finger with my trim router, just taped it up so it would not bleed and went back to work. and of course my csf leak 8 days after surgery! lol

http://www.youtube.com/watch?v=SdsUvMrE0S8

now that leak is rare so dont freek when you see it