What was The Turning Point Which Led you To Join LwTN?
I remember very clearly being deep in despair and feeling convinced I was the only person in the Universe who had TN. I Googled TN and thankfully this site popped up. I joined and within minutes I realized there were people in the world who understood me, fully and unconditionally.People who accepted me. It made such a difference and still does.
I had been watching the site for a while as my husband has tn . What led me to join was my 12 year old daughter having episodes of unilateral electric shock type pain to her temple and ear. The fear was overwhelming. The pain stopped around the time she had an orthodontic maxillary expander plate removed but I will be watchful waiting. We have a referral to a Neuro and the children’s hospital is only an hour away. Little did I realize that the ongoing sinus ear teeth issues I have would lead me to a Neuro and face pain specialist .I think first reading here then joining has streamlined our journey. I instantly felt better and could "just breathe"when Jackie and Crystal welcomed me .
I joined after my intense pain returned I had Gamma knife done in 2008 and after 3 years it came back in 2011. See my post.
Procedure Depression under forum/discussions.
I joined a couple of weeks after I was diagnosed when it really hit me that having TN meant that I was going to have to find a way to live with the pain because there wasn't an easy way to cure it. I wanted to get as much information as possible and while I was online I came across LwTN. This wasn't just information, it was people I didn't have to explain the pain to. Everyone might have had different experiences of TN but they all understood how difficult life with it was and I kept finding posts that made me think "that's just like me". I immediately felt much less lonely and more hopeful that I wouldn't have to live with unbearable pain all the time. After all the times when I felt I couldn't bear the pain and the way it was affecting my life any longer it was such a relief.
I joined after an internet search, I had two different doctors tell me two different things , so I started googling away and found this. I joined as soon as I saw it!! It was scary, because one doctor told me I would be "better in two weeks and it would go away for years" , yeah right..but I had the feeling he was full of crap , and good thing I did. I have learned so much, good and bad, but at least we all know what we are up against and can be advocates for ourselves and others with this bastard of a disorder.
Wendy
I had so many questions to ask, found the site and I turned to Red and asked away. Thank you Red.
Thank you all for your replies. Where would we be without our Red? We all owe him so very much.
I typed Trigeminal Neuralgia in my facebook search and it led me here. I am so thankful it did because I also thought I was alone. I also have a big thanks to Red for everything he does on here and the support he gives!
I agree, big kudos Mr Lawhern!
Dana Nelson McCullah said:
I typed Trigeminal Neuralgia in my facebook search and it led me here. I am so thankful it did because I also thought I was alone. I also have a big thanks to Red for everything he does on here and the support he gives!
I found this site when looking for answers as to why my face hurts or feels awkward all the time. It must have been something that I typed in the google search engine (I don't remember what it was) that brought me here. I was so relieved to find this site, suddenly symptoms that I had experienced for months any which had been downplayed or misinterpreted by several dentists, started to make sense. I'm very thankful for this wonderful community of people who do understand.
After I read what the medical sites had to say about TN, I thought there had to be MORE to the story. There had to be ways of coping with the pain, or treating it, or anything other than the dismal information I was seeing. I also needed to connect with people who understood what I was even talking bout. I look fine. A bit fat, but healthy. I feel like a lot of your do, though, and it can really tear at your sense of self to constantly be asked to explain why you can't do this or that, or why you have broken plans....again. I am lucky, I have a supportive family, but to the outside world, even to some of my doctors, I am willfully not measuring up. Additionally, this IS an isolating condition. I feel that in many ways, I have become a totally different person because of it. Though I was always an introvert, I still liked to be around people for measured doses. Now, I simply cannot be around people, unless I keep earplugs on hand. In a nutshell, this site gives me a way to be helped and, hopefully, to help, without having to guard my head, especially my ears, from assault.
I was looking online for information, because I had just been diagnosed and I was very afraid.
I also want to say that with 400 tegretol and lots of acetominophen daily, I am doing well, able to function, and have had no more episodes of intense pain. I have a dull burn constantly and occasional throbbing, but those attacks have backed off. I fell good!
This group is a godsend. And I think there is hope for all of us.
I love hearing positive testimonials, great news Coartchick xx
I am with you coartchick...I am on 450 Trileptol with up to 400 Tegretol only as needed for breakthrough pain...I have not had a REAL BAD attack in a little while but live with a constant dull aching / burning / occasional 'jab'... I am starting back to school (teacher) this week with kiddos coming in on Wed...I am concerned about the stress that I know is coming and the subsequent possible 'terror' appearing again...
Prayers and hugs for all on this site -
I just wanted to know that someone else understands, while my husband and family try to help they have no idea how hard suffering with TN can be. Today is my 2nd sick day with TN in over 3 years, the pain has caused me to have reduced function in my arm and leg (and I’ll probably be given a warning for being off sick) i am currently taking 2 x 7mg of lyrica a day and cocodamol on top of that. I don’t want to increase the dosage too much but while I’ve managed my pain well so far my flare ups are becoming more and more frequent
Everyone who has replied, thank you so much for explaining your reasons. I am so thankful for this site and all my amazing friends here!
My diagnosis a little while ago gave me quite a shock - this is the first time in my life that I have something that is not going to be fixed with a quick dose of antibiotics. I feel heartened when I read so many comments that members make to support one another - most of them total strangers with this one big challenge in common. And when I feel sorry for myself, I can always read some useful suggestions for getting over it.
It is pretty hard for loved ones to understand that this is not a pain that can easily be releived, and that it can strike so often and so badly that I don't want to tell them about it - I am afraid that they will think I am making a big deal of it so I try to keep it to myself.
thanks to everyone who makes this site possible.
Failing different medications and feeling like I was the only one who couldn't manage. The doctors make it sound like each thing definitely helps everyone with a few minor side effects - neither one is true, typically. It's helpful to hear what other people's experiences are (and to read medical articles that make it clear that my experience is not that unusual). That info makes it possible for me to make a practical plan and keep going.
I was doing a search for Trigeminal Neuralgia when I came across this group. Wow, I couldn't believe that there were so many other people who were suffering also. I had heard it was rare, but after joining this group I realizing it is not that rare. I hope this finds you doing well Jackie. I miss talking to you and don't really know if you remember me. I've been away for quite sometime except for the past few weeks. I started a new group called Topical Cream for TN patients. I hope you will visit. My goal is to tell as many people as I can about this cream that helps me so much and anyone else I may give it to. My mom had birthsitis (sp?) in her arm and could not move it until she got this cream. Great for back aches and whatever ails you.
God Bless.
Julz