This past July when my latest flare-up started I thought I could handle it. My last attack happened a year ago on the other side of my face and only last a week and a half. It was pretty awful but it did go away. So this year I thought I was going to have a similar experience. I had no idea that the pain was going to turn into a continual searing agony which only let up when I slept and lasted for over two and a half months. In addition to the TN pain, I got migraines frequently. I almost lost my job and spent several nights in the emergency room. TN makes me hate life and the medicine makes me nauseous.
That’s all bad enough but my boyfriend recently told me I made it all up to have a reason to stay on pain meds. He said I’m a drug addict who’ll do anything to get drugs! This hurts me more than anything. In addition to having physical pain I have someone very important to me tell me I lied about it.
I feel so alone and I don’t think I can stand to deal with someone who tells me I’m lying about something that has ruined my life. I was wondering if anyone could relate to the loneliness and isolation I feel and, if so, how do they handle it?
Sincerely,
Melissa
Thank you for your friendship, Melissa!
“I used to do drugs, I still do, I USED to do too.” Mitch Hedburg
Here, you are not alone, bob
Thank-you. I wouldn’t wish this condition on my worst enemy but I would like my boyfriend to have an idea of what it’s like to be in this much pain and to know that it’s never guaranteed to go away for good. That it is a life-long condition. I would like him to experience this and then be told that he has “cyberchondria” which, as the name implies, is a form of hypochondria associated with doing internet research about one’s symptoms, and that, no, he cannot have pain medicine because he’s lying to himself and to everyone around him to get drugs. He complains when he gets a kidney stone and goes to the ER to get dilaudid and a prescription for Percocet. I USED to complain about stones and go to the ER for stones, BEFORE. Now I wish that they were the most painful thing I had to deal with. If I could just go back… Anyways, now I’m afraid to change my drug regimen because the pain is (after two long months) manageable and I can finally work full time again. (I just get mild electrical jolts once in a while.) He’s demanding that I stop seeing my doctor and that I quit all my medications. I’m so afraid that if I quit now, without having the option of surgery or some alternative means of pain management (I’m on morphine and tegretol) that I’ll be labeled a drug addict and when it gets bad again, because of the label, I won’t have access to proper pain relief. I was a chronic pain patient before TN so I have a high tolerance to begin with and I’m afraid no doctor will risk getting me re-addicted no matter how bad the pain is. And as far as trying to educate him is concerned, I’ve directed him to this website, emailed him the letter on here addressed to the significant others of TN sufferers (which made me cry because I felt that it summed up my experience brilliantly), and talked with him, even when it was excruciating to do so, till I was blue in the face. He still refuses to acknowledge my experience and calls me a liar. If he could only feel what I feel when it gets really bad, maybe he would validate me. I hate this condition and I hate that the prognosis is so poor and depressing. I cry when I try to think of what kind of future I have to look forward to. Especially with someone who used to banish me from his sight when I would get a headache. This is worse by far, and if he couldn’t tolerate me then, what am I in for when this gets bad again? He wants to deny me healthcare and refuses to do simple things like ask me how I’m feeling (one day he did do a little research about MVD and I was so enthralled because I believed things were changing for the better that I teared up). Mostly, he hangs up on me when I am crying in pain or sighs a heavy sigh like I am putting a great burden on him by expressing my feelings. I must admit to myself that he is just plain abusive. I’m never going to convince him that I’m really going through this agony and terror if he refuses to believe me and I know that I must do with that information what is right for me. After all, it is lonelier to be with someone who doesn’t validate and love me than it is to just be single. At least when I’m single I don’t look to another person for support. I just have myself. I’m so glad I found this site. It seems as though no one understands like a fellow TN sufferer. I appreciate the support. Sorry for venting but what Nancy had to say kind of gave me permission in a way to express some of my frustrations. Again, thank-you.
I also understand all too well what you going through. Im 17 and bilateral TNand its been absolute agony, disrupting my schoolwork. I am very alone, more now than ever before, none of my family understand the disease and they dont care, my friends… well I have no friends at all, havnt for a while now, not even got one best friend that I can confide in. You would expect your doctor to understand and want to help, mine doesnt. He doesnt understand the disease at all expecting me to cope by just taking neurofen (ibuprofen) and he basically told me I was becoming neurotic… well thanks a bunch, now on the seacrh for a new doctor but its taking time in between school. The only support I can find is from this site, and various groups on facebook. I too feel very alone in this but trying my best to constantly interact with the TN family in order to (try to) keep above the depression from loneliness!
Melissa,
Some significant others have a a difficulty with relating to our illness. I know that I have a problem believing that it is happening to me. I isolate and only have friends that are ok with that. You are worth so much more than to be treated with such cruel words. I wish you the best.
Tara Shuey
Allentown,Pa