I am finding it so hard to cope. I have ATN ( I am supposed to go to a neuro this friday to confirm) and I just read the chat from mid August re: ATN.
Why is MVD surgery NOT effective if it's all caused by pressure on the nerve?
How long will the meds work?...if they work?
How do you guys function in your lives? Are you happy? Can you EVER forget you have this horrible thing?
Do you think you have ever been TRULY happy since diagnosis?
I am absolutely paralyzed with fear for my future...why do I have to have ATN? Seriously, is there hope for a good quality of life or am I doomed to a life of CONSTANT pain?
Please...your responses help me cope which I seriously need right now...I have never been this scared and I feel like I would rather die than go through this.
Hi Liz, I understand this feels very overwhelming and frightening. There can be life with ATN and hope for remission.
I have both ATN and TN. As to why I have this, I have not received a definitive answer. My ATN pain was primarily focused in my right temple. I was prescribed a topical compound of Gaba 5% Keto 4%, to be applied on my temple and within my scalp. It made a world of difference, other compounds are being used as well. Lidoderm patches and EMLA cream is readily available by prescription and can effectively help to numb the area.
I was in remission for three years, I suffered a relapse as a result of toric bifocal contacts, not something I would have opted for had I know the risks. Tegretol was prescribed and relieved the pain beautifully, unfortunately I had issues with side effects. I am currently taking Gabapentin and it is helping with the pain. I am seeing a new Neuro soon and will continue to explore options.
The best advice I can offer, is hang on to hope, it is one of the beautiful four letter words. Without it, I would not be able to battle this disease. I have hope for all of us, that one day there will be answers and we will be pain free. Barbara
I still have as much happiness as I did before I was injured. I have more pain, more frustration, more caution, less activity, more medical bills. But not less happiness because of those things. I have felt depressed, destitute, sorry for myself, mad at injury and the pain. I see happiness as something separate though, like the sum total of my life before and after TN and what's to come. I almost killed myself in 2009, about a year after the injury that resulted in my TN. But even as I was considering it and making plans to check out, I realized that I was not unhappy but just couldn't deal with the sickening pain I was having and still have. I couldn't take my life and I knew it. I wanted to stop hurting, but not enough to say goodbye to everyone I love and to every wonder of the world. I'm seriously scared for my future and from what I've learned about TN, it gets progressively worse and I've found that to be accurate for me personally. I never forget I have TN, because I have pain nearly every day of my life. There were 4 straight days last month when I had no pain because I was on prednisone. I smiled more on the outside during those days. I'm not a candidate for surgery so I know I will always be on medication and always be in a control battle with pain and side effects. I lost my relationship and will probably never start a new one because of the TN. I lost my job in 2008 but have been working for the past year and a half, full-time. Sometimes it hurts so much at work that tears are rolling down my face. In spite of all this, I cannot imagine being full-time unhappy. I'm not religious, I left religion before I even became a teenager, so I don't have a god to bargain with or a devil to blame. I'm laughing because I just read what I wrote and I SHOULD be pissed, I would be justified in being angry and defeated. It just isn't in me.
I do get mad, feel helpless at times, feel alone, and miss things I used to be able to do. I get fed up frequently with the overwhelming pain and the whole damn thing. I'm sick of taking meds, sick of not making plans, sick of going to the doctor. All of that. I know how you feel too, honestly. I hope you feel a lot of happiness in spite of the pain and circumstance of TN. I'm glad you posted.
It makes me so sad to hear how you are in so much pain. I too wonder if it will ever end, but then I come home to my family and focus on my girls and my pets and distract myself. I have endless pain which has really made things difficult for me today. You need to try to distract yourself with things that make you busy or happy. I have managed well for the past couple of years on gabapentin and if you are medicated right, so will be able to carry on, not the same as before maybe, but you will get there. Try a hot water bottle on your face. I find I get relief from that. Also, codeine is helpful. I have a lot of trouble with muscle pain in my face too (maybe the fibro I also apparantly have). It is hard. We can do this! Please look after yourself.
YES! you can still have a good quality of life with ATN. There is always hope that a good Dr will find a good working regime that helps you. I am hoping that comes your way soon. I am happier now than ever in my life. I feel proud that I can overcome or work around the obstacles my ill health has presented me with.I am heartbroken for you that you feel so low with everything. Throw yourself on the mercy of your Dr, that's what I did and he helped me so much to find a good neuro. I told him more or less what you are saying. I told him I had had enough and did not know how I would survive it all. He listened and helped me and the surgery made regular calls to check on my state of mental health as I was at the end of my tether. I hope this sort of help is available to you, and soon. Take care.
Hi Liz, I've had times when I've felt like you do, and the doctors are still adjusting my medication so even now things aren't perfect, but the pain has gradually got more bearable as they try more things and increase the doses and that has made it much easier to cope. I find that I really enjoy the good days, even if I still get very frustrated by the bad days. Once things started improving I had a lot more hope that I would be able to cope and now I am gradually finding ways to improve my quality of life. I really do have hope for the future even though I don't really know what will happen and I do have happy days, go to work and even occasionally go out! I would like things to be even better, but it is so much better than when the pain was at it's worst.
I would also repeat what Jackie has said - make sure your doctors understand how you're feeling so that they can help.