I was diagnosed with TN in 2011, the gabapentin worked great until Jan of 2014. Since then the neurologist has been increasing my meds at every visit. I am now on 2100mg of gaba and 200mg of lamictal. There are some good days and lot of really bad days. I have lost my job to layoff since feb 2014, i can’t get back to work becuase of the pain and the side effects of the meds. I have become a stay at home mom, doing things like cookin, cleaning and many other household things that o don’t enjoy doing. I have lost the sense of identity. I dont know what to do anymore, feel stuck with this life. I get the thoughts of suicide sometimes. I can’t talk to any one, i tried talking to my husband but he gets upset with me if i tell him i am feeling sad. I keep up happy brave face, i don’t even tell anyone when i am in pain. I hate that i have this illness at the age of 35, which has taken my life and career from me. Lost all the hopes, i tried many alternative treatments but nothing work. Nobody can understand how i feel. Thoughts of son stop me commiting suicide, but i am really tired of hoping to get better.
Hello Buttercookie. I'm sorry to read you are so unhappy at the moment. I too lost my job last year. I just couldn't keep going due to the pain. I'm sure your family appreciate all you do for them. Getting meds right is difficult. Have you considered surgery? I now make and sell jewellery online. It's not particulary successful at the moment but it has given me something to focus on, I'm also starting a blog, and have started moderating on this site and the GPN site. I hope they manage to find a medicine that is effective without the horrible side effects. It may be a good idea to speak to some professional about your problems and thoughts. It may be a stupid thing to say but I hope you feel better in yourself soon. Mary
Hi Buttercookie,
Sounds like you are struggling, like Mary says, we've been there. I'm glad your beautiful boy is keeping you grounded because that is really important. There's a couple of things you can do. Firstly, you really aren't your TN, and when we have bad days, it seems that way, but it isn't. Sometimes the meds do lose there effectiveness and then it takes a while to find something else that works, or a mix that works for us, but keep at it. If you're not happy with the side effects get your doctor to find alternatives, or ask about different ones folk have had some success with on this site. Some medications can also effect mood, so ask about that as a side effect and read the literature on the drugs you take. If you need someone to talk to, there's always someone here on this site, and we get what you're talking about. I found, when I got stuck, getting a little selfish helped. May sound awful, but I decided to find something I liked that TN couldn't stuff up for me. Do something fun or special, just for you. When you are in pain, its ok to let people know. Sometimes husbands hurt as much as we do, and more if they can't fix it, So let him know he doesn't have to fix it, just give you a hug and say its ok. Remember you don't have to be happy and brave, you just have to be you. If you feel it will help there's a hotline number for the US at the side of this discussion. Its there because sometimes we need it. Stop hoping and start doing, because your boy needs you. Start with small steps, do something with your son that you both love. Work out what your triggers are if you can. Mine are light, noise, sharp temperature changes. I have draught excluders under every door, only eat and drink warm stuff. Tiny things, but the difference they make adds up. I hated that I couldn't go to the movies, but I do now. I wear tinted glasses and use ear plugs. I can still hear the movie and the kids feel like they've had an outing with Mum. Grieving your old life is normal. You need to know it does get better, it just takes time, patience and a little creativity and you'll be amazed at what you can achieve. One day you wake up and realise you have a great life, a new life, with new dreams and aspirations. So go for the first small step :) You can do it, and its worth it, trust me.
Oh buttercookie, hugs. You sound like you're in a rough spot now. I think we all get low with this sometimes... I know I've been there.
This forum is a great place for being around others who understand what you are going through. Also maybe there's a chronic pain support group near you? I go to one and it really helps to just be around people who get it.
Take care buttercookie.
Thanks Everyone for your responses. I know many of us with TN have been where i am currently and you guys have found hope in the darkest times, but few like me aren't able to see the reason to hold on to. writing here somehow makes me feel i am talking to someone who knows what i feel. TN has changed my life in a way i never imagined, it has made choices for me that don't like. For last one year i have been hoping for things to settle down so i can get back to the life i have before. The current situation doesn't feel normal, and i have desperately waiting for it to change. The more days pass without any change the worse i feel. I don't know how much longer i can take this. I think about the therapy sometimes but i have to tell my husband about it before i go for it and convince him i need it, I can't talk to him and tell him what i have been thinking. there i s a lot i want to say, a lot that i have been hiding. I don't have lots of friends to talk to, Few who i have are working of busy with there life. The background where i come from getting help from psychotherapist is weakness, we don't talk about these kind of things. So, i can't express it to anybody, i always pretend to be normal in front of everybody. Thanks everyone who every replied or read my message, this is the only place i can share my thoughts and not be seen weak or judged, i might just keep adding more messages here thinking there is someone out there who hears me.
Buttercookie there is an American Academy of Pain Management (that's the professional association for pain management physicians) certified doc there in Folsom
http://www.folsompainmanagement.com/conditions.php
I knew Dr. Kalauokalani when she was at the University of Washington. She is one tough Cookie but you might give her a call. She is one of the tops in country and has an integrated practice including some folks who can help you meet the new you and adjust to a new normal. At the very least she may have some ideas.
BTW there isn't a higher calling than being a Mom. Everything else is secondary. One thing IS clear. You are a great Mom. Keep at it.
TJ
Hay, DO NOT even think of suicide. I know how your feel i have this junk too. Boy are you right about feeling lost with it. It seems that people just don't see how much pain there is with this because there is no physical out side things for them to see,( i.e no blood, or broke bones sticking out, etc.) so they think it's being faked. It's not it's real and it HURTS LIKE HELL. I'm having Cyber Knife operation Oct.14th this will be the 2 operation I've had for this stuff the first one only lasted about 8 months , that was a PSR. Mean while I'm on Gaba 600 3 times a day and Cbam. 200 3 times a day along with 10/325 Oxy as often as I need which is about 4 times a day. It's like zombi medicine and I feel a lot of the time like one but it keeps the pain liveable. Hang in there and tell your Neuro what is going on. Don't even think of garbagecide. LOve ya hang tough and keep on keeping on.
Cookie, it is lonely!!! It’s why I sought out online help as well. I admit to wondering if the gabapentin gives a tendency towards dark thoughts, as i have found myself in some uncharacteristic shame spirals since taking it and I didn’t know if it was that or just coming to a place of acceptance that this may never go away. It makes my spouse sad when I voice that my face is bothering me and I don’t want him to be sad too! It’s tough. For me, it’s best to be busy to keep my mind off it. Hang in there!
I’m 33 maxed on gabapentin at 2400 mg and just started on low dose lamotrogine . I understand … I’ve been in non stop pain for 2 weeks only so I can’t even know how you are brave enough to withstand as long as you have without support . My boyfriend is awesome and gets it … My employer is struggling though . I have to take a heating pad with me . She doesn’t want to hear it hurts no one does … We have each other … Other people with tn … You need to lean on us . I’m a young mother too . I have 4 kids a full time job and do most the housework . I’m also in pain from tn and sick a lot non tn related . . You can talk to me . Please know your not alone
Thanks everyone for your nice words, they mean a lot to me. I know you all understand what i an going through more than my loved ones. My hubby is good guy, he appreciates everything i do and loves me a lot too. But, he is very emotional about all this matters so i can’t share with him about what i think, which makes it even more difficult. It’s hard to accept this being the life now. I guess eventually we all get used to the things and they don’t bother anymore. I try to meditate and it does help with the thoughts, but the bad days make me want to end it all forever. I hope the future holds more good days than bad ones.