`*Hi , I’m feeling very alone and unsupported, im single and my daughter has gone back to college she’s been wonderful ,I feel guilt for not being able to do more for her she’s been so helpful and careing to me . But I don’t won’t her to worry and I’ve told her that but I know she does. She worryies because I’m alone and have been so sick. I have some family near bye but I never hear from them I have been sick for almost 2 years and had MVD surgery about 8 months ago with no improvement meds do little or I have reaction to them . I take 900 mg gabapentin 3 times per day and just came off oxcarmazapine due to bad skin rash itching all over…I also take morphine with Percocet for breakthrough I have tried everything I can’t work and financially I’m very stressed. I try to stay positive but is sooo hard I’m isolated and having hard time functioning . I feel as though people like my sister and brothers don’t believe how horrific this is , like I didn’t improve after surgery and now there done with me it’s so upsetting to me I just don’t get it.my daughter sees and feels this too with is why she’s worrying so much for me, she knows how alone I am in this . I guess you can’t make people care and I have to get over it being upset won’t help me . I try to let my daughter know I’m doing fine and not to worry and it’s good she’s at school and I want her there doing well studying and enjoying college.thats the best medicine I could get! I’m sorry I’m going on and on rambling , I just need to vent with people who understand.im tired of trying to explaine the pain I’m in to people as if I need to prove to themits for real. I’m so tired of it all. Thanx I just need to get it off my chest.
I hope that you find support with the people on this website. When I am down about this rare condition, I read everything I can on this site. Many have been through this and family member and friend don’t understand this condition. I am in my third year of ATN but my first year and half was like a night mare. I am wondering which type do you have, if you have atypical Trigeminal neuralgia or GPN, add your doctor to try an tricyclic antidepressant which works very well with milder side effects than antiseizure meds.
Also, try Capsician cream which Walmart sell over the counter.
I am very super sensitive to drugs.
Remember this condition goes into remission. Hopefully your will too. It took over a year for mine to go into remission.
I know what you are going through. I feel sad for you and the rest of us.
Thank you Linda , as you know we have good days and bad. Today is better day, some days I just get so down that it feels I can’t pull out of it. I have type 1 and 2 tn the sharp stabbing electric with the deep boring constant pain. I’m also very sensitive to meds and yes I’ve tried the antidepressant drugs and antisesure , with very little improvement. I’ve tried so many of these meds I don’t think there’s much left . My pcp and neurologist want me to try a pain management center, try to get a better handle on the pain , maybe injection Botox ?? So I guess that’s my next route. I am very happy I found this site and I do same by reading every post it’s been very helpful learning so much about this nasty condition, and realizing I’m not alone that so many of us struggle with the same symptoms and side effects from meds etc… Thank you so much for your suggestions and thoughtful response . I pray we all get reliefe from these conditions, thank you so much for your kindness and encouragement !
Let me know how your Botox treatments goes. I have read many have found them to work. Like you said we do have good and bad days. I am hoping for another remission for you and me.
Hi LIZ,
I understand how you are feeling. I have no family nearby and often feel so alone. I guess you are also coming to terms with your daughter leaving home too. That on it’s own is hard to deal with without constant pain as well.
I think TN is difficult for people to undesrtand unless you have or had it. If you have something like a broken arm you can see that’s what it is. Outwardly there is ‘proof’ that there is something wrong because you have a cast on it. However I’ve found TN comes into the 'hidden’category of illnesses. People can’t see any outward signs of the problem, even if you are banging your head against the wall! It doesn’t help that it can last for so long without remission. Then if it does go for a while they think you are cured! Hang on in there and know that the people in this community do understand and it’s a great support system.
Hi Liz, I totally understand how you feel. Have you tried changing your diet. No caffeine and less sweets. If you are not sleeping well try this over the counter sleep stuff called Midnight.
I just recently went in for MVD surgery and the surgeon found a tumor on my 5th cranial nerve, That was causing my acute facial pain. I had to stop working because I couldn’t talk, be in the wind etc. I still have damage to my 7th cranial nerve from CyberKnife in 2009.
Well after my surgery I stopped taking all opiods. My doctor increased my blood pressure meds to twice a day. That seemed to help. For my anxieties I am taking Buspar. It is wonderful and non addictive. If you were taking Gabapentin along with oxcarmazapine together that may not help. My doctor took me off the gabapentin and told me to play around with the dosage of OX until it helps. So now I take 600 mg at 10pm 300mg at 6am and 3oomg at 6am making sure I take it with food like halp a pudding cup. I always take that with food. That seems to be helping me.I am dizzy and can not turn fast or I look like I am drunk. Every now and then I feel some jaw pain like a tooth ake and pinges in my right ear.
Where are you located. My neurosurgeon name is Dr John Main in Tulsa Oklahoma. His nurse’s name is Linda, I do hope thatyou can convince your daughter to help you. Please do not try to take on the world by yourself. In May I finally got my son involved after he had to spend the night in the ER while I was screaming and crying. He took over and helped me with making the arrangements for surgery and with the insurance company and I finally gave in and let him. So you call her up and ask for her help because you can not do this alone.
God Bless YOU
Robin
Google him. He studied in Great Britian and lives for working on the brain nerves.
Hi Robin thanx for your advice and support , it sounds like you have had a tough time of it for quite some time… I’m glad oxcarmazapine seems to be helping you. I think it was starting to help me too but started getting bad rash and itching all over after being on it a while got worse as I increased the dosage so doc took me off. I’ve tried nearly everything , the only thing that gives me relief are the opiods there has not been one day that I haven’t had pain since this began, can’t believe how something can go on and on like this , just one day would be like heaven!! Your Dr. Sounds great unfortunately I live in the Boston area or I would get 2 nd opinion with yours thanx for thinking though. I feel much better emotionally since i first posted sometimes I seem to dip down low and get sad about it all , but I always come back into focus . Maybe it’s ok to let it out and get it out then move on with it all. Thank you so much for listening and responding , it’s soooo great hearing from people truly understand! Thank you.
It’s really hard to find support when it is hit and miss whether people even believe your pain exists. The worst for me is when the medical community doesn’t believe it exists.
I’m new here, but this does seem to be a great place. People here believe pain exists, should be treated, and people do need support.
I don’t know what I’d do if my medication was causing so many side effects. I’m really sorry you haven’t found one that works. I’m glad opioids help you. You’ll receive no judgment at all from me for opioids, and I’m sorry you have to deal with the mess surrounding those too.
For what it’s worth, you have my total support to do what is best for you. If there’s one thing I’ve learned, only we can measure our pain and are the only ones who really know what is best for us. People can look at us and make judgments, but they don’t have that first hand experience.
Hi Liz Welcome Home!
I am relatively new here too but have never gotten any bad advice and we all strive for relief in whatever way we can find.
It is very hard to hurt like we do. Do not be shy about asking for help. I found this site to be my safe space. 
**i am doing fairly well on Doxepin ,
Capzasin cream. And Gabapentin compound cream.
But if my pain persist after an hour or two, I will take A Tramodal or 1/2 of. .5mg Xanax and will get complete pain relief for over 8 hours. I almost forget I have this ATN problem.
I only do this once or twice a week because I do not want to build up my tolerance, addiction, or withdrawals.
Sometimes I will do it if I a special event or family outing.
Perhaps your doctor might let you try them. As we discuss we have good and bad days. I find after a very bad day, the next day is good.
Also, try peppermint oil on gums, peppermint lifesaver, and if it doesn’t hurt to chew - try peppermint gum. It calms the nerve down. I got the formula for oil from some one on this site. Let me know if u want oil formula.
Hi Liz, I get the shot in my face right now… it helps for about 2 months. It’s not botox is glycerin and alcohol and something else. It works. I’m going in for my second mvd here soon. I’ve had this condition over ten years. . Sucks… I hope you get some relief…
Thank you for responding , I appreciate your understanding and kindness . I agree completely that this condition falls into the category of hidden illnesses. It doesn’t help us much when we’re feeling so sick with pain and someone tells you you look great you must be better! I don’t even try to explaine it any more, guess they could be saying you look awfull … Thank you again !
hi liz,im sorry you are suffering so much and without support from a loved one…thats tough…but need not be!Get your daughter on board,she will want to be involved even if she is living away…a quick phone call to her and some tlc from her will do wonders for you,tell her everything about yourself and your pain and being involved will not stop her worrying but she will feel better about you …and you are her mum!Next get on a pain management programme,they are very helpful and you will meet people face to face with your pain problems.Look in your area to see if there is a TN group and join if there is or if not start one up.Stay on this site and other sites,a good one is Patient,ask questions,and above all be your own advocate and research.Also as someone has said peppermint oil in a carrier oil on a cloth and smell it when in pain and also as said if you can chew peppermint gum.i cant offer any advice re your financial situation as I see you are in the US and Im not famliar with your benefit system.Is there any citizens advice centre you could go to? Okay then dear liz I do hope you can begin to look up a bit in spite of your pain…hugs.