Living with TN in your 20's

General General TN & GPN (Old Site)
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Hi everyone. I was diagnosed with TN when I was 22 and am now 26 (almost 27). I have had many different types of injections and been on all kinds of medications to help with the pain. I was able to keep it under control and graduate college, semi live life and even start law school. But this past summer the pain became so bad that I decided to have a MVD. It failed so I had to have another MVD about 4 months later. The second MVD took away a lot of the facial pain but I still have really bad days. My amazing team of doctors are still trying to figure out what is causing the pain but it has been such a long and frustrating journey!

I am wondering how many of you were diagnosed at a relatively young age and how are/did you cope with it? I love my friends but they just do not understand what I am going through. I get angry when they complain about the little things in life because I am going through way worse. Although I know if I hadn't been diagnosed with TN, I would probably do the same. I feel like I am isolating myself more than I should because I don't want to try to explain to anyone anymore what I am going through. I look totally "normal" but of course I don't feel that way. Any suggestions or similar experiences would be greatly appreciated.

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I did a demographic study of 1800+ members here, a few years back. What I found is that the population of people with chronic neuropathic face pain (either TN or ATN) is somewhat younger than most sources in the medical literature indicate. The median age of first pain presentation in that group of members was 42, and about a third were age 30 or younger. 80% were female. When I talked with one of the members of the medical advisory board at the US TN Association, he told me that he sees very much the same picture in his practice: the common new patient is a woman in her 40s.

The social isolation of chronic pain is a well known medical and personal hazard. Patient to Patient web forums like this one, and face-to-face support groups are frequently helpful in overcoming that isolation. If you happen to check in and find that nobody is on line at the time you are here, then there are at least five major groups on Facebook where somebody is active pretty much 24-7. The aggregate membership there is over 15,000, though there are doubtless many members who belong to more than one of the groups. If you have a Facebook account, search the medium for "TN" or "Trigeminal", and see if you find a group that seems to be compatible.

You are not alone in this disorder.

Regards,

Red Lawhern

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Welcome and sorry you have to be here but at the same time know that you are not alone in your time of need at all. While everyone’s story and symptoms are somewhat different here, everyone will understand where you are coming from in one way or another. I’m 26 as well but only started up for me last year. I always feel it’s somehow worse for someone to get it even younger, I feel I at least got to enjoy up until my mid twenties without it so I’m sorry to hear you go it at 22. I fully understand your anger. I had a massive row with a very good friend over her giving out about a cold she had not stop. It took a long time for me to realise I use to be the same, so much as a headache before this and I thought it was the end of the world!! It took a lot of apologising on my behalf, but I find now that I’m a little bit meaner if I’m to be perfectly honest. I have no sympathy or tolerance for people who do not suffer with something life long which isn’t right either but right now I just can’t help it. I have lost friends because of this. The last time I saw what I thought was a dear friend of mine was before Christmas when she was telling me she thought I might have been a bit depressed at the time and to be careful of it( which I was), not a word since then. I’m afraid they just don’t understand, at all and in a way I’m glad because if they were to understand they would have to live it and I wouldn’t wish it on them. I tend to just make my own rules now, if I’m having a bad time I tend to isolate myself, talk only to those most sympathetic because if I don’t I get angry with those who aren’t an I just don’t need that on top of everything else. When I’m good I make an effort with everyone, it took a long time for me to realise they just don’t get it and it will never change l, to take a deep breath and relax with them. I know this isn’t possible all the time with TN, so like it said I isolate myself when I am struggling. Probably not the best option, I will reach out when I need the help but prefer to go it alone it’s easier sometimes. I gave up explaining it to everyone. I will educate those who want to learn and for those who ask if I’m better yet a simple I’m still alive will do. If they become smart or ignorant about it I like to ask them if they would like me to hammer an ice pick in their ear, set fire to their face and attach a live wire to several of their teeth and ask them what they think? That didn’t go down well either. They stopped commenting that I’m always sick though :slight_smile: whatever works!!
I’m sorry you’re procedures weren’t a massive success and I hope your team can come up with something for you. Yes TN is completely life changing. There is no denying that. Just don’t let it consume you, that’s what I keep telling myself. The person I was before this is still here. She is just very much afraid of cold winds and every twitch or spams to the face but she is still here. I think the biggest lessons I have learnt so far is to keep your circle small, you only need a few good friends you can trust and rely on. Record everything. Every itch, pain or something new gets written down. Learn your limits, and listen to your body. Take it one day at a time. And most of all, know that you are not alone. Your in America, there is bound to be someone living near you that has this, near enough your age. Find out. Join a Facebook page, reach out and ask. I’m in Ireland, for a while there I thought I was the only one with it here but I’m not, obviously :slight_smile: it’s taken nearly a year but I’m finding the support locally.
I think if you can find that support, take one day at a time and have a small group of people you can rely on that it’s OK. Not great, but OK and for me that will do for now.
Hope your feeling someway well
Suzi

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Hi Suzi, thanks for your response. I just joined this online support group and knowing I am not the only person who feels the way I do makes such a difference. And that I am not making up the pain :) I too have lost friends in the past 4 years because of the pain. I have realized that chronic, severe pain does weird things to your personality. I do have a local support group through my hospital but I am not ready to join yet. Thought I'd try the online thing out first.

Recently I find myself having a hard time reaching out to friends when I am having a better day. I don't know if this is because I am tired of them asking how I am doing and not really wanting to hear the answer, of them not understanding the complexity of my condition, or being afraid of being in some kind of pain in public. TN is such a big part of my life but I feel like it is my whole life right now. Between having 2 MVDs four months apart and trying to recover from the surgeries and still in pain, it is really tough. Part of me wants to try and explain what I am going through, and the other part says what's the point. Do any of you guys struggle with these feelings? If you do, how do you reach out to friends when you are having better days? Any thoughts or comments would be greatly appreciated!!

Tamar

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I'm 26 and have been dealing with this for about 6 months. It is hard when your friends want to go out to eat or even kissing my boyfriend. I look for little victories throughout the day to stay positive.Every morning when I brush my teeth I say a prayer and play Rocky music. Its kinda gets my pumped to take my mind of how scared I am to put the toothbrush in my mouth. Also when I am speaking with close friends about my day, I say something like great! I ate an entire piece of toast today without any pain. Sometimes they forget how serious it is because we don't "look sick". Idk how many times a day I get the "oh you still have that". Just try to look for the good, I know its hard.

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A year and a half ago, at 24, I started my new life with ATN. since then, I have quit a job I love and moved back in with my parents, 140 miles from my old home. Socially, between the move and the side effects of Chronic pain I have lost touch with a lot of friends. For the most part, if we see each other we are happy to talk, but there is more distance than there used to be. The few friends I have burdened with my crying/screaming mental breakdowns are either much closer to me, or we don't talk anymore.

I am working on making new friends locally, and that too is a struggle. I am artistic, I like to be a little unusual, and I was looking for a way to make something "good" out of my ATN, so, I started painting my face where it hurts. Luckily I don't have any touch triggers, so it doesn't hurt me worse. I find it fun, and I found out it really changes how people treat me when they know what the paint means. If I show up to a game night, or a party and I have blue swirls or what ever across my cheek from my chin to my ear, my friends know that it is probably a pretty bad day and they treat me with more patience and kindness. Some people even come up and give me hugs with out my having to say a word. Which some days is all I want, but because this is invisible we don't get that kind of support. So I had to make it visible. If you would like to see my face paintings, I post them up on a blog at maskingthepain.com. I know MANY of us can't touch things too our skin, so face paint sounds like a really bad idea, but maybe there is some other way to signal our friends and family about a bad day, like wearing a pin or flashing a hand signal. It may or may not help, but it might be worth a try.

I often tire of explaining it, even to doctors and nurses, but I have found that it helps when I can take the time to explain. I tend to shock people into seeing how bad it is by telling them my my nightly routine before I was diagnosed. It goes something like, "At 11pm I would take 4 Ibprophine, 2 Vicodin and try to sleep. I usually got 3-5 hours and then I would wake to the sound of my own screaming, I almost never fell back to sleep after that." Like Suzi's description of her pain, this story usually freaks people out enough that they don't tell me to "suck it up" "shake it off" or "get over it." Some times Shock and Awe is the best possible way of dealing with people.

I am doing decently with a small circle of good friends, but I mostly worry about romantic relationships. How many Guys in their 20's or early 30's want to deal with a girl who is in pain most the time? So far...none. Even if a guy seems interested I feel guilty if I don't warn him about my bad days, and it is heavy stuff to talk about on a first date, but if I don't I inevitably bite into something hot and start gasping and tearing up and it all spills out anyway. Like it has been said above, TN is SUCH a big part of my life and how I do things now, it isn't something I can really hide or ignore.

Well, thanks for letting me ramble on here. It is so nice to see thoughts I have thought, written by others who get it. Not that I would wish any of this on you all, but since we are in the same boat at least we can share each others pain and frustration and reach out for support!

Hang in there!