Well I honestly don’t know why I didn’t do this sooner, look for a support group that is. I’ve had TN for about 7 years now, first diagnosed at 22. Now I know most of you live in the U.S. But I don’t, I live in the Caribbean so a lot of your treatment options are not available to me. In my country there’s only medical management and if that fails, like it has with me, you just have to suffer in pain. Today was a bad day for me in terms of the pain, hence I went looking for support groups because honestly, as much as friends and family sympathize, they don’t truly understand the level of pain you’re in or how utterly frustrated and useless you feel. I do appreciate their support though and I know I’m truly blessed to have that in my life.
So in terms of medical management, I’ve tried steroids (didn’t help), antibiotics ( because an ENT doctor thought,maybe sinusitis caused it) - also didn’t help. I’ve had one dose of amitriptyline, but a lot of vomiting after so reluctant to try that again. However I was also very sick at the time of amitriptyline so maybe the vomiting was related to that instead. I’ve tried lyrica, no help except if I want to be a zombie. I’ve tried carbamazepine, which seemed to help however I developed Stevens Johnson syndrome after 2 weeks of carbamazepine so obviously that’s off the list too. My latest attempt is with gabapentin, which is supposed to be safer than carbamazepine however I noticed similar symptoms 2 weeks after starting it so I stopped in fear of getting Stevens Johnson again. Needless to say I am extremely frustrated, depressed, questioning why this has to happen to me, and when will the pain ever go away. In the past I’ve had breaks where I could live a normal life however I’ve read as you get older the breaks become less frequent and shorter in duration. Currently I’ve been in pain about a year and getting longer every day. I wonder if my breaks are gone and I’ll forever be in pain…sigh.
Reading some of the posts on here healed a little part of my soul tonight, to see the love, understanding and compassion displayed. I really needed some understanding and I definitely found that here. I hope I can be of help to someone and I truly thank all of you for being here. Looking forward to being part of this community.
And as my name says…just keep swimming
Hi just keep swimming,
Your story is very touching. I hope I can give some encouragement. I too was in your situation, but I had the MVD surgery in Aug. 2013 and have been pain free of TN since. All of my side effects to the surgery was gone in about 6 months so I am completely back to normal. I had suffered 5 terrible years from TN and I remember the awful days and nights. And you are right, people are sympathetic but can not relate to what you are going through. If there is anyway, please consider the mvd surgery. You will need to come to the US to have it. Since you are in the Caribbean I imagine Miami is close. That's where I had my surgery with one of the best neurosurgeons in south Florida. Have you considered a chiropractor, there is an office in Atlanta GA that practices orthospinology chiropractor treatment specifically designed for TN patients which some people swear by. Maybe there is this in the Caribbean. My advice is to try to make a goal to seek treatment in the US. This may sound easy for me because I live here, but I hope you can make it and get the best treatment to possible rid yourself of this pain.
Thanks so much for your encouraging words! i really appreciate it :D
I'm actually looking at my options in the US right now however I think my insurance may not cover it and I'll have to bear the cost on myself...which totally sucks :(
Nevertheless I'm still researching my options and I agree with you, MVD seems the way to go, I'm very scared though! I saw that John Hopkins has a TN center however you mentioned south Florida which is actually a lot closer to me. Is it possible for you to give me the name of the institution you went to and your doctor? I'm basically looking at all my options because I know surgery is no small feat and I like to be fully prepared, whether it will happen soon or 10 years from now! CONGRATS on your successful surgery and recovery and I hope your painfree days continue for the rest of your long and happy life!!!! All the best! :D