Let me start with I am terrified. I read a few discussions and hearing that people have lived with this for years is truly depressing me. This is the worst pain I have ever felt and I have givin birth to two beautiful daughters that have to watch me as I am crippled with pain. I try my best to not let them see but they do. I don't know how this started I am waiting on my MRI and MRA to maybe shine some light. I want to be normal again, I want to go back to work.
Hi Sid,
I remember very, very well how it feels to be faced with this monster, in dire pain for months on end with no one really helping and waiting for appointments and tests and medication. Scared and anxious too.
I'm sorry that you are here and I hope that you find some answers with your tests coming up but don't be surprised if nothing shows. The MRI is used more to rule other things out, like MS or a tumour. Many of us have clear MRI's time and again.
This is not a death sentence. Many of us are able to lead full and happy lives despite having TN. You will learn that you are stronger than you ever imagined. Especially with kids. I have one daughter. She was four when this started. There is nothing more difficult then trying to be a parent and deal with this pain because you don't have the luxury of resting and cancelling your life when you need to right?
There are lots of medications to try and lots of them work for us.TN can also come and go and go into remission. I had a very long remission of 7 years and since then have pain free days, weeks and years. I work full time. Have a beautiful daughter and two step-children, take care of my house, socialize. You know...lead a full life.
That is not to say that it is all roses. By now you know that isn't the case. Learn as much as you can, become your own best advocate and do not stop looking for help until you find Drs that will listen to you and help you. We are all here for each other all the time so ask anything.
Jane
Thank you Jane for you taking the time out of your day to respond to me. I don't seem to get that much on here. I'm still having a hard time accepting this. I thought it was something they could make go away with the medication. I've cried quite a bit reading how long people have put up with this horrible condition. It makes me worried that I will not be as strong as everyone else.
Waiting for my results for my MRIs, I am hopeful but I am not sure what I am hopeful for, a tumor? nothing at all? Something to be cured would be nice. A better way to understand so I can explain it better to my children who ask more questions than I can answer.
I appreciate all of your insight and kind words,
Sid.
Hi again,
I spent 30 minutes in my car last spring sobbing my eyes out and sputtering on the phone to my mom because I had REALLY been hoping for a tumor or an anurism that could be easily fixed. It seems crazy, and like you are disrespecting people who do have cancer, but it was genuinely how I felt. I knew ATN wasn't a death sentence, but it feels like a life sentence of suffering. At that point I didn't have good treatment and I couldn't see how things could ever be better.
They are better, but I still feel like 75% effective and capable as I was, partly because I will probably always have to choose between break through pain and bad drug side effects. I was literally tortured 24/7 for just over a year before I found a drug combo that worked, and I am taking a long time to physically and mentally recover.
I have had a long history of many kidney stones and other VERY painful conditions, but the constant and severe nature of my TN is a special beast. A nurse friend said, "TN, Kidney stones, and breaking your femur are supposed to be the 3 most painful things a person can live through." I joke that I have done 2 of the 3, if I can just manage to break my femur I can be the official decider of what pain is worst. I have become quite a fan of morbid humor out of necessity.
As for describing it to friends, family, and employers: https://www.pixton.com/comic/b1i49swv This web comic is my go-to resource, I actually printed it out and took it to doctors, social events, and work for about 3 months until I felt like most the people in my life understood as well as they could.
Accepting this is really hard, I have been working on it for over a year now, and I am far from being over my anger, confusion, and despair. I will probably still have moments of those feelings as long as I still have pain. There is hope, I know that, but it is still hard to feel it. I couldn't even start healing and adjusting until I got some pan relief. Hang in there and try not to feel like you are weak, or failing. If you are still alive you are as strong as we can be, anything you are still getting done for yourself or your family is amazing! You don't have to worry about being weak, I bet you just about everyone on this site has felt like a failure, I know I did. I try to remind myself this is big. This is Bad. This should throw me for a loop for a bit. But after a few months or years, most of us find enough help to rebuild our life, I just have to keep going and be patient.
If you want to see details about the crazy things I do to keep myself sane you can check out my Blog at www.maskingthepain.com. Sending cyber hugs and prayers your way!
-Erika
Erika,
I have been having a few good days so far, which kicks in my optimism. I'm a hard person to keep down. I am actually thinking about returning to work next week if i can continue to have good days. I seriously appreciate all the information and good vibes, I always had a sick sense of humor so nobody is shocked when I joke about my condition. My ex and his wife looked up TN when they thought I was high when I dropped off my daughter ( I wasn't driving) well long story short they apologized for not believing me and thinking that little of me.That is whole different headache lmao. I think stress has a hand in this for me so I am doing things that make me happy and so far so good. I am going to try to work out today and see how that goes. If i can't be outside tanning and drinking wine, best believe I am going to try to work out. The beast will not claim me. Not today, well maybe today we will have to see what happens after all that strain. Laters.
_-Sid -_
Glad to hear you are having some good days, that is the best! Stress certainly plays a part, and it is hard to lower stress when you are in severe pain. It sounds to me like you are doing everything right! Like most people on here, your optimism is inspiring. Feel free to message me if you ever need a listening ear, I usually get on the site every few days.
Sid,
As you state you are new to this saga, some four weeks ish, which is good news as in you already have a possible diagnosis and have been proactive enough to find this great site.
I might just add, MRI/ MRA is useful in excluding nasties, which are an extremely low percentage of sufferers, ( as in so low don't extend worries prior to results), but I would also add consider certain findings as possibly normal such as microvascular compression, before taking a leap of faith with surgery or destructive procedures. You mention headache in your profile, a vague term, but I would urge you to ask your neuro, if TN is your settled on diagnosis, if your neck could be the cause of your very unpleasant symptoms. If they state 'no', I would be looking for another neuro, just that the neck should be considered before aggressive treatment intervention, with or without but especially if you have headaches.
aiculsamoth,
I've had migraines for over a decade and I thought they were nasty until I encountered this lovely condition. I have had 3 doctors including the neurologist give me the same educated guess. After all, isn't that what it is? They don't know what causes it, or a way to prove it nor a way to cure it. I am not sure about any of this to be honest. I asked about my previous MRI and if it was connected and was informed it has nothing to do with what is going on.
I will continue to look for answers because my kids and I should know what I am up against and an educated guess/ medication is just not good enough for me. I appreciate your input.
Answers, aren't easy, but guesses aren't helpful. As you state the medics guess, roll the dice etc.. I have a bias but you seem to be above the curve for such a short term diagnosis, you are proactive and this will be to your benefit. You mention your kids as as a a driving force, regardless of your TN , I've no TN but my kids are my all. You are in front of the medical curve already in such a short space of time, your likely to have happy kids (Probably are already), just continue with your open mind. Wishing you well.