Encouraged by Mimi I am hoping to get a new discussion going by members who are managing to have a some what "normal" life on meds. As a newbie I noticed that many who post are in crisis and are searching for support and pain relief. A few like me though find reading these posts to be somewhat daunting after a recent diagnosis and/or good response to meds. I don't want to minimize the need for support for those in crisis but for now Iam looking for those diagnosed with TN but for whom the meds are working. I hear that there are members who either cope well with meds or who have had a period of remission. If I remember striking back correctly it said that about half of TN patients do manage for long periods just on meds. So where are you guys! I would love to chat and hear how you deal with the emotions of the possible scary future? Also any challenges with co-workers or family who don't know what all the fuss is about because you seem okay to them? Just because we may not have some of the pain of others in the group at the moment doesn't mean we don't need support and a place to ask questions of our peers. Hope to talking to many of you soon....especially those like me who have never posted before :-) Kay
Kay,
I live as close to normal, well it can be considered normal. I go to work full time and am even doing part time schooling right now too. Take care as much as able to of my kids and hubby. The medication just keeps my pain levels down to functional, I still have pain through out the day; it’s just not screaming at me so loudly. To get to this point has taken me a lot of determination not to let TN rule over me. I won’t lie it was not cake walk and still is not a cake walk. There is some adjusting I had to do and some of ideas and adjustments are a daily trial. You can live a normal life though it is possible. I’m always taken aback a little when family friends and coworkers ask me how I do function so normal like even when I’m in pain or having a bad day of pain. Any hoot it can be done. If you have any questions I’m more than happy to answer or try to for you:) have a great day
Ha! I don't know what you mean by normal. It controls mine most of the time, but there are times when I have SEVERE breakthroughs and have to increase AGAIN. For that, I am extremely tired a lot. I try not to worry about the future. I will worry about that when it gets here. :-)
Please take heart, it is human nature to cry out more when in pain than without it. We all do that. I am a managed member. Lots are. I am not paid free but I know I am very, very lucky. I hold down a full time managerial position, volunteer on here and have hobbies I enjoy. I refuse to lie down. I will be dead a long time one day, so for now this is a gig I will try hard to enjoy, pain or no.
Kay
How are you doing? Did you have a good day? How are you doing with your scarey thoughts of the future? Are these still freaking you out? In case they are here’s how I deal with these thoughts.
To be honest thoughts of the future ate at me for months and still do at times. I’ worry about gosh how long is my medication going to keep working, how nasty it will be to switch meds again, how am I going to keep working, how long will that last for, what will I do then, how much meaner can this pain get, will I ever get back on track with school, what will i do when one of my doctors retires, or something happens to one of my doctors, what will i do if we move out of state, and the list went on and on and some of it was much darker but we don’t need to go over that. I’m sure you have at lest one of these thoughts.
So any ways, here is what I do. I focus on the here and now. That’s able all the energy I have. If its a good day great! If I have bad day I put it behind me and don’t dwell on it. My medications are always taken the same time everyday to avoid the bad days as much as possible. My goals and plans are some what short sighted. For instance I’m going to start planning my garden here soon. My goal for work is to go to part or stop working in two and half years, it depends on a few thing and reasons for this, for school I focus on one class at time, at work its one project at time, my social is one party at a time. Only a few of these have set dates of when to be finished. If I focus on the future too much I won’t enjoy what I have right now with all considering is pretty dang good. Deciding on not think about my health in the years to come took some pratice and time. I would set my self a small goal like I’m not going to think about for one hour this morning, then it was I’m not going to think of it this morning, then the whole, a couple days, a week, and so on. Like I said earlier I won’t lie I do at times go back to worry about these (in particular as of late) but after a while really I stopped thinking about. If there was something that would really bug me I’d talk to my hubby about it and we’d make a plan if needed for whatever it was. Hope that helps you
I thought I came in a posted last year about having a normal life again, but I might be imagining this :) maybe I had good intentions
I have been managing my TN with meds for the past 2 years with good results, actually i would even say great :) I was med free for 10 months and have only just had a slight relapse, I even made it through my wedding no pain.
I have just gone back on medication because of a 4/10 twinge just to stress I would say, mine is really linked to my lifestyle for some reason, so very strange. I have lost 18kgs in the last year and with that I was able to stop taking my meds.
I will admit I am a little disappointed to be back on my meds, they knock me around a bit but I know once I adjust to the medication again I can generally have a "normal" life for me.
I think this post is a great idea, i know when I came on here i was very overwhelmed and felt so bad for all that were suffering, hope everyones pain improves, always thinking of you all.
Thanks to all for your replys. The more I hear that people do manage on meds the more hopeful I am. My nature is to be a planner so the living in the moment thing is hard for me. I think it is a great philosophy for all given no one really knows what is around the corner but still I like planning vacations a year out etc. This diagnosis has scared me more than anything and after only a month I find myself worried about planning to give a speech in two weeks or other public things..... in reality my symptoms are very mild on the meds and odds are nothing will happen during the speech.. just a fear brought on by the possibility and reading so many posts about the terrible pain of others. My pain now is more mental than physical which is really self imposed I guess. I hope that in time this will get better. I was interested to learn about the lifestyle thing. I lead a high stress life and am seriously overweight. Has anyone else found lifestyle things to effect the frequency or degree of symptoms? Take care, Kay
It’s so important to our forum I believe to show that many people live “normal” lives and have managed their pain with meds. (And not necessarily high doses either).
While my pain was managed at 800mg Tegretol, I worked part-time, volunteered, raised 2 daughters and really other then taking my Tegretol , almost forgot I had TN.
During my 8 year remission, I went through one of the most stressful times in my life, my father got very sick in a short period of time and was on life support for more than 6 weeks, a year in hospital and then another year in a nursing home before he passed away.
I lived in a different province, and was his primary caregiver, had power of attorney etc…
I would fly back and forth 1hr and 45 min every week…my kids were young.
I was lucky I worked for an airline ( cheap flights)
BUT during all that stress and worry, I never once experienced a relapse with TN.
If ever there was a time for it to come back, it was the perfect storm, yet it never did.
I share this only to say, we just don’t know enough about WHY TN occurs, what causes it to go into remission or how to make it just plain go away for good.
Of course I’m in a different position now, BUT I truly believe that first and foremost pain control is THE most important thing you can do. It takes time, but it can and does happen.
We are all unique in our journeys with TN, have faith and try really hard not to imagine the worst case scenario…because you might just be able to manage really well. If you do remember the forum, and come back and share your positive stories so that ALL newly diagnosed people can be reassured that receiving a diagnosis of TN does not mean life is over.
I'm almost pain free on 800mg of tegretol. I get shocks when I blow my nose or when putting makeup on around that area but I can cope with this. When I first got TN I would just sit still most of the day waiting for each shock to start, really frightened. I wouldn't say I lead a normal life by far. I'm constantly tired all the time and get really depressed any time I try and reduce my meds so I've given up and am just taking the 800 per day. I also take dihydrocodeine for another condition but I'm unsure if this contributes to the pain relief though I'm sure it does to the fatigue. Once the tiredness and depression passes I hope to lead the life I used to but for now I'm thankful that I'm not sitting in fear of the TN pain :)
One thought that really helped me was, I have TN but TN does not have me. This one thought helped me a lot and lead to actions on my part such as going back to school. That I will do whatever I can if I must will do something different to do the things I want. Try to focus on what you can do for now and just try thinking about TN does not have you does not boss you around that you boss it around. I know this all sounds funny and silly but it does help. Hope you are having a great day.
So glad that mimi despite her current challenges suggested I start this discussion group. You have certainly inspired and calmed me at this difficult time. 2 months in I am still in a very mixed up state but your posts are the firsts that I have read that made me feel encouraged. I am glad to know that others have sat fixed in fear even without the pain. I have felt myself wanting to stay away from the world but your messages reminded me I need to take control where I can and not isolate myself. Thank you all so much!!!!
It’s also certainly alright to have a wide range of emotions. I’m almost to my two year marker with having tn and still have a lot of different emotions about it. There is a subgroup called grieving itt goes over some of the feelings you can go through. Knowing these emotions and that it is alright to have them certainly helps too.
Even though TN stinks having looked at as new opportunity to challenge your self to do better think better and learn some really good lessons that most either never learn or only learn about when it’s too late. One other tip someone here told me was to look for the good of having TN and not to focus on the bad parts. For example on really good days you really appreciate all that you can do and the people you got to spend with and also the activity. On my good days I’m so thankful for the time I get to spend with my kids and on my bad days they are the sweetest caring people I know. If I never got sick like this they might have learned to be such thoughtful kind loving and helpful individuals that they are today.
I’m functioning well on topiramate and acupuncture. No anti depressants. Crisis pain days I stay home take Percocet and flexoril and go to acupuncture and hide for few days. Massage also has helped . On good days I’m at the gym or walking .
I use prayer and meditation too. Really believe in this . I have full time job as a nurse in an intensive care . As long as I keep up with therapies I’m golden.
Hi Kay, I am another person whose pain is fairly well managed. What works for me is a combination of medication, applying heat and physical therapy exercises that I do several times a day. I am not pain free by any means, but I have days that are pretty great, when I am aware that the pain is there but I don’t really notice it and it doesn’t interfere with my life. There are other days that are pretty crummy, but one of the good things about dealing with this for so many years is that I can recognize the pain patterns now. This makes it so much easier to deal with because I generally predict how long an episode will last and what I can do to alleviate it. The most important thing that I have learned though, is that no matter how bad things get, that they will always get better, because they always have.
I am extremely fortunate to have a caring and supportive partner and truly awesome coworkers. I must credit this site for helping to support those relationships by simply taking the pressure off of my family and friends to be my sole support system. When I come here and say that I am having a horrendous day, everyone here knows EXACTLY what that means, and that understanding is invaluable. It is also incredible to get to share experiences with others that are in the same boat, so to speak. That is why I look at this site nearly every day. I think it is a fallacy that once people feel better, they stop needing this group. It may be true in some cases, of course, but I think there are many of us who feel very much a part of this community even though we don’t post very often. I often look at LwTN while on my lunch break at work and see posts that I would like to reply to, but simply don’t have the time to do so. Then once work is done, and supper is made, I’m just too wiped out to write anything. That said, I am working towards making time to post more, because everyone here is important to me and I would like to contribute as much as I can.
When I read that you like to plan vacations a year out, that made my day, because I do too! In fact I just bought tickets for my husband and I to go overseas for our Honeymoon (we have been married for five years and are just now getting around to it) in a few months. I reckon that if I can go to work everyday, then I can go on holiday as well. I am aware that there is a chance my pain levels could flare up, but I know that it is a tiny risk and that having a proper break will do us a world of good. My plan is to take some reasonable precautions such as increasing my pain meds for the plane ride (per my doctor’s recommendation) and making sure to stick to my usual routine of heating and PT while I am away. This has always worked out fine on shorter trips we have taken and I’m bet that it will again when we go to Europe.
So, if I were you, I would keep making plans for whatever you want to do. You will find your way though it, I know it. We are all on your side.
My meds work for the most part. I am on 1200 mg tegretol a day. But I DO have some breakthrough, just not as severe as before. But then I have to deal with the exhaustion, forgetfulness, struggle to think of words, etc.... But I would rather have those than the pain that brings me to my knees. I have type 1 TN.
My ATN started 2 months ago and I have been on medications for a little over a month. I'm so grateful that the Neurontin and Anafranil I take are doing a good enough job to keep me functioning as normal as possible. Life has definitely changed but if anything, living with TN really shows you what you are made of and we are often stronger than we think. We have to be. I still sometimes feel like someone has punched me in my cheeks and have the occasional icepicks in my head but it's no where near as painful as before. Honestly this website terrified me in the beginning, now I can't imagine life without it. It is scary and depressing to read about people in such pain when you are new to this condition. Now I often worry and think about the friends I made here because only we know what we are going through. It's a place of acceptance and comfort and I often turn here when I am having a bad day or in pain. Usually when I am feeling good I keep busy so sometimes I miss discussions that I could have contributed to.
I'm also a meticulous planner and a bit of a control freak so it was really hard for me to be positive and face the fact that this was something I could not control 100%. Once the meds started working, my family and friends encouraged me to continue life as normal as I could. I moved back to London and continued full time graduate school. I missed my exams in January (because I was in the so much pain I had to be hospitalized) which the 'old' me would have thought was the end of the world. Now I'm like oh whatever I will just take them in August and graduate two months later big deal. In a way, since my meds started working and reducing pain, I felt like I was given a second chance. I have no idea what tomorrow will bring, thats why when I'm feeling good today, I do things that I have always wanted to do but never done pre ATN because I felt like it could wait or that I didn't have enough time, or even was just lazy. It's really important to live in the NOW and not dwell on what could happen because that will take you to some dark places and make the pain worse. I also took a hard look and realized I used to stress and worry over the stupidest things when I should have been enjoying my health and my life. It makes you realize what is truly important to you...if something wasn't, I cut it out. I am lucky enough to have an amazing support group of family and friends who are sympathetic, understanding and even read about TN to know what I am going through.
Apart from meds I am vigilant in taking my vitamins, doing yoga twice a week, eating healthier, drinking plenty of water, using heating and ice packs, seeing a chiropractor, taking my meds the same time every day, getting plenty of sleep (sleep helps me reduce the pain and gives me a 'time out') keeping a pain journal, seeing a psychotherapist who helps me deal with all my thoughts and doing small things that bring me joy and make me smile, like sharing a joke with my dad or youtube-ing funny videos of cats (love the one of a cat eating watermelon! so cute!) It's not an easy path, that's for sure, and I know I have just begun this journey. I don't know how long I will feel this good, whether the pain will all come crashing back, whether I will ever be able to work and support myself, if I will ever have a family, etc, but for now I push those thoughts aside and continue with my day. You can do the same. Enjoy every moment of the good days and remember we are here for each other on the bad ones. Wishing you the best,
My spouse first presented with face pain in 1996, a year after root canal and on the opposite side (probably not related, but she's often wondered). She was initially put on Tegretol with good results at a dose of 600 mg/day. She later asked to be switched on her own initiative to Neurontin, having heard that Tegretol can be hard on the liver for some patients. She has been on a stable dose of 2700 mg/day of Neurontin since 2002. She has minimal side effects from this med, and it "knocks the top off the iceberg" reducing pain from a 10 to perhaps 1-2. She has many pain free days and minimal side effects. Primary noticeable side effect has been occasional word-finding difficulty.
She was able to work as long as she wanted to, retiring at age 63 while I was still employed. Her work was responsible -- she was assistant to the Comptroller of a wholesale mortgage banking concern, handling millions of dollars per month in mortgage resales. In retirement she's doing fine.
I realize that not everyone does this well on this med. But you asked for success stories, and hers is one of them.