I need help from others who understand and can possibly help. You never think in a blink of an eye your life will forever be changed. Especially in your twenties. I went from a joyous care free young woman excited about life to an afraid sorry excuse of a person alive but never truly living anymore. I awaken every morning with the dread of oh god what is today going to be like. I’m in pain every waking moment from atn. The only joy I get is when I’m asleep. Every dream I ever had has been stolen…dreams of being a mother…gone. I can’t have a baby on medication and even if I did why would I want to raise a baby whom I want to love with such a bitter attitude towards the world? Every day is a why me why god what did I do? Why won’t you heal me? My faith and family is the only thing getting me thus far and even still this disease makes you see everything just so evil. It makes you question faith it makes you question god…why am I being punished? What did I ever do? I question living on a weekly basis , I cry every single day and most nights I ask god not to even wake me. I awake and have to drag myself out of bed to put on a fake smile to the world and pretend everything is OK. What kind of life is this? What do you do? If surgery is not an option and medication does not work what do I do? I want to fight I want to live I want to be happy but every time I try a new medicine or meet a new Dr I end up getting my hopes up so why even try anymore? I wouldn’t wish this on my worst enemy…how long do you think my husband is going to put up with a miserable wife? No one understands how can I be happy if I’m in pain everyday that you couldn’t fathom? This disease not only kills you physically but mentally and emotionally as well. I feel so stuck…there is no light at the end of the tunnel. How can I live fifty more years this way? This is the pain threw the eyes of a atypical trigeminal suffer and I pray each and every day for a cure for each and every one of us. Tears run down my face as I write this. People my age will never understand I’ve had more pain in one year then you will feel your entire life. I’m such a strong woman but when is enough ,enough? Something has got to be done. Has do you just tell someone sorry we can’t help you learn to live with it? What is wrong with this world? The medical field doesn’t give two shits about us. I pray one day we get the love we deserve. Thank you
Oh Jennifer, I am SO sorry you are struggling so much. I know how it feels, at least I know how my ATN feels, I wish everyday I didn't. It hurts so bad, it bores through your flesh, teeth and bones and warps your mind. There are no words to describe how it feels to wake to the sound of your own screams after 3 hours of heavily drugged sleep. What makes it worse is knowing you will be the same in 24 hours. The months of begging doctors to listen is a aspect of this hell that builds unique frustration inside. It has made me a bitter, cynical, and angry. Why wont the doctors even TRY to help!
I have also given up on ever having children of my own. I worry that I will be single forever because no man will be attracted to a drug zombie who cries a lot, and rarely has energy for anything fun.
I have found some relief with medications. Well, relief may be too strong a word. My pain is still always there, but it is more around a 2-4 instead of an 8+. I feel like I can stay alive, even if it is a half life of what I had planned. Keep pushing the docs. I planned a sit in, 3 weeks into having ATN (months before I would get a diagnosis). I literally packed a lunch, a book, and my laptop, and scheduled an appointment. I was ready to not leave the office until they did SOMETHING to try and help. They decided to try sinus treatments and antibiotics, which I didn't think was right, but at least they didn't just send me away empty handed like the times before.
Even with "management" of my pain, the future terrifies me. I hate thinking about anything more than 2 weeks in the future. It gives me literal Anxiety attacks. I keep telling myself that it will work out, and I will find ways to live, and my friends and family will still love me. I can't lie though, I don't always believe it. I wish you the best of luck with doctors, and everything! I know you and I are stronger than just about anyone else around because we are still alive. This is horrible, and it is not "all in your head" except in the way that it is... :) I send my prayers. <3
I can honestly say I know exactly how you are feeling and I've asked myself all of those same questions. I have had ATN/trigeminal neuropathy for 13 months. My pain is always there and a constant reminder of the day when my life forever changed after getting dental fillings which went horribly wrong. I have a strong support system of family and friends, but I still feel very isolated. I don't personally know any other twenty-somethings forced to live with chronic pain.
I considered myself a woman of strong faith in God prior to this happening to me. But now, my faith has been under a huge strain and I can't wrap my mind around why God is choosing not to heal me. I just keep reminding myself that I am not all-knowing, all-powerful like He is and that there must be some greater plan that transcends this pain.
I keep researching pain management and keep trying procedure after procedure, medicines, natural remedies, anything to keep me optimistic and having faith that something will eventually help.
Dig your heels in the ground and refuse to give up. Do not let this steal your joy. We will lose the battle some days, but we need to keep fighting for our quality of life.
Jennifer, you are not alone. I'm 50 -- almost twice your age -- but I still have dreams and hopes for a future, and now I feel stifled. I'm single, and I worry that no man would put up with "I don't feel well" for too long. One reason that I divorced my husband 10 years ago was because "I'm sick" came out of his mouth too many times and I couldn't see anything wrong other than the occasional cold or flu. Also, I can't go do fun things with my 16-year-old son. He doesn't get it. My ex-husband accuses me of being nothing but selfish. That hurts so much! The lawyers I work for say they understand but sometimes I'm not sure they truly do. I dope myself up with as much as my body will tolerate and go to work.
One of the medications that has helped me stop crying about this awful condition is Amitriptyline. It is an anti-depressant often prescribed for this condition. Every morning when I walked my dog, I asked all the same questions that you have written. Why me, God? What did I do that was so awful to deserve this? I cried all along my walk each day, hanging my head and not cheerfully greeting my neighbors anymore. Having just lost both of my parents in the last 2 years, I felt like I had no one to talk to about this. I thank God it didn't strike me while they were alive and aging because I had to take care of both of them. Anyway, the anti-depressant REALLY helped me stop crying and feeling so sorry for myself. As of today, I am attempting to up the dose, hoping it will further nip the pain I feel. I also rely on Imitrex (sumatriptan), which is prescribed for migraines. It also helps on very bad days when the two afflictions combine to make me feel like hell.
I work 7 days a week between 2 jobs to make end meet. Thankfully, it helps me focus on something other than how crappy I truly do feel. I also indulge in music, my hobby. On the days when I'm at my worst, I go to bed and pray my way through it.
Another way to help yourself is to try to remain calm because becoming agitated makes things worse. Take deep breaths. Maybe try some yoga or something gentle like a good massage every couple of weeks. Treat yourself well on your good days.
There's GOT to be a way for you to get some relief. There's just GOT to be. And remember, you're not alone.
Thank you ladies you are all beautiful souls. Why can’t I stop feeling sorry for myself? How do I accept it and just move on and be as happy as I can? Why do I dwell on it?? The depression is worse then the pain I feel like sometimes. I take an antidepressant already but I’m so down all the time! I need to accept that it is what it is…but I let it eat me alive every single day
I feel even if I got cured tomorrow I have PTSD or something. You don’t go threw something like this and walk out the same
I wish I knew how to stop feeling sorry for myself, I haven't figured it out yet. :) I also feel like I have PTSD I am seeing a pain clinic Psychologist and he hasn't really answered that question either. I will let you know if I find something out.
Acceptance is a word I’ve always hated. I try to just be content where I am, knowing things could be so much worse, and then still hold onto hope for the future. What are we if we have no hope?
This pain has made me take a closer look at the lives of the people around me (especially my patients- I am a therapist) and realize I have a lot to be thankful for. I just can’t allow myself to sink down into that dark hole again.
Things just HAVE to get better for you. We, as humans, are very resilient. You can feel better and get better.
Hi Jennifer. I am so sorry that you are going through this. I see all of your posts and know what a hard time you are having. You are trying so hard and being such a good advocate for yourself. I was 29 when I was diagnosed and can identify with everything that you are saying. It has been a process of grieving for me...one that I am still going through. With time does come a certain level of "acceptance" but this pain changes your whole life...physically and mentally. I think it especially hard for someone so young. Feel free to message me any time. We are all here for you.
Thank you to everyone for your support and love it truly means a lot. Thank you!
Jennifer, only people who have experienced the unrelenting pain of a chronic condition like TN can fully understand the burden you carry. Have to talked to your family doctor about resources for coping with this chronic pain? I'm not saying that you should give up looking for a cure, but while you are still suffering, your doctor may have some help to offer.
Although you can log on anytime in the day or night, people cannot be here 24/7, and if you find yourself really ground down, please remember that there is a crisis line that you can call any time. It's posted on the main page, but I'll paste it here too --
First take a deep breath, then call the National Suicide Prevention Hotline immediately. 1-800-273-TALK for members in the United States.
Jennifer, we value your friendship and participation here. Will you promise us that you will call the Hotline if you find yourself in desperate straits? Please say you will.
Seenie from Moderator Support
Yes I promise. Thank you for the support and guidance
Don't give up. What you wrote is exactly how I feel. I have had atn 8 years. I have had a few procedures. I also suffer from tinnitus that is so severe. I got both at the same time. For many years the dr's told me that they could not do mvd on me because it was atn. I had many mri and cat scans that showed nothing abnormal. I recently found a dr. that did notice something a little abnormal. I have a mvd about 30 days ago. It was a very tough surgery but I think I am feeling a little better. He said that it will take time for the nerve to heal itself because it was compressed for so many years. I am hopeful that the pain will dissipate in time. His name is dr. Lotbiniere. his phone is 914 948 8448. He has traveled all over the world to help people. Keep your chin up. You will get through this. My meds that help me are hydrocodone, Neurontin, Xanax , Zoloft and baclofen.
keep me posted
I two lived this. Mid 20s, lost a lot. Scared of everything really now and suddenly realised I had no life outside socialising and work that I can’t do any more. It took a long time for me to realise I was grieving the life I once had and have no doubt that when the next attack comes I’ll feel the same again. The meds don’t help with the mental mood. I was on lyrica and amitriptyline and while these are technically two anti depressants they, along with the situation in general made me very very depressed. I couldn’t even cry to realise a build up of emotion because the lyrica kept me in such a state of numbness. I kept a diary, wrote it every day without fail. It wasn’t until I started to reduce the meds( very scary time) and started to read back over the diary that I realised just how bad I was. I have to admit that keeping the diary kept a load off a little bit. Just to write it out and leave it there every day. Now I try to remember that for now I do get months of relief and I have to remember that when the next one comes it will go away, hopefully.
It’s a horrible place to be but know that you are not alone, not even close. Someone here will always understand what your going through.
Jennifer, did your injection give you any relief? I truly know what you are going through. My journey has been very difficult and seems to getting even worse this year. After I had a MVD that made my pain far worse…because I had never had v1 pain…just v2 & 3. That was the worst year of my life because I had never experienced the total inability to sleep, depression and anxiety followed. I knew I had to get better so I worked hard to get out of the depression, found a dr that gave me a script for restoril which helped me to sleep, and even took a 45 day leave of absence from my job to work on my health. Paramount to my recovery from depression and anxiety was my acceptance of my pain. I made peace with it and was determined to live my life the best I could with the beast with me everyday. I am convinced that you can get some help…not a cure…with the right drugs. Some that I took that year was klonopin, restoril, tegretol, Benadryl and when needed trazodone. Note that several of these are for sleep which continues to be my biggest problem with the burning, weird sensations and throbbing. I also repeated to my self throughout the day a mantra, “I’m well, I’m healthy and happy.” Your brain will believe what you tell it. I hope my experience helps you stay determined to find the right treatment to help improve your quality of life. I have also found that staying busy helps me not think about the pain. I encourage you to walk or take up a sport like tennis that will put you with others and help you not think of the pain.
Unfortunately no the injection did not work…I see the Dr again Tuesday after this one…I’m not sure what he will say. I’m gonna Start messing around with my meds again if I can.its just such a hard process. Every time you think something is going to work and it doesn’t its such a major let down. I thank you for your kind words and I hope you know I am here for all of you as well and I wish you pain free days.
Hi Jennifer I also suffer like you guys and lost friends left and right. My family cannot understand me. They wonder why I’m so paranoid and shop fearfull. I walk around with ear plugs to cut down on the vibrations. I to walk around with horrible thoughts in my head. I get some dirty looks. I figure my ora and peace has been stolen from me. I joined this site awhile back and my phone was stolen. That’s anotherthing. I’m so forgetful. Anyway with some research I found ity again. I’m so sorry to hear about your condition and everyone else’s on here. I also wonder how long my wife will deal with it. She had to watch every noise she makes. When it’s really bad if the refrigerator turns on it puts me into tremors with crushing shocking pain. I’ve had this over 4 years now. I use to go to concerts and all kinds of other events. The biggest party just ended that I use to have tons of fun with family and friends called Mardi Gras! Since this I’ve never been back. I rarely want anyone to visit me. I have a nice boat that just sits there. I lose interest very quickly. No one understands me. Thanks for listening. I hope I don’t have many typos. Rather use my ph where I can Swype.lol
Hi Jennifer, I hope you are doing better. This condition sucks, it is so consuming, it completely takes over your life. I wish there was more we could do than just words of encouragement for each other. I pray for us all that we get a break from the pain however slight. Have you seen pain management Dr’s? Any form of surgery an option? I was turned down by 2 neurosurgeons, third one offered to help and it has, a bit. I’m better than I was anyway and every little bit helps. A few glasses of red wine helped me sleep as well. Hope you are ok.
Hi Jennifer I am so sorry!! I am constant pain right now too. I’m going in for MVD this Thursday. I can’t imagine your pain. I have type 1 trigeminal neuralgia. Had it for 10 years. I’m hoping that you find some kind of relief.
Thank you everyone. Borris what procedure did you have done to help? Yes I see pain managment