New to TN - Here's my story. Please share your insight with me

Hi everyone! I am a 39 (and holding) year old mother of two typical teenage girls. I am going through a divorce (initiated by me) and have a wonderful support system from my parents and brother who live close by.

My very first blog - my kids were surprised when I learned to text and got on facebook. Look at me now!

Oh yeah - TN!

I was diagnosed roughly 5 years ago. I did a lot of research and reading and I decided that I was not a typical patient. I DO NOT have any dental pain, and my pain does not throw me on on the floor in agony or bring me to the point of fainting. I do get daily "attacks" but I live with them.

It wasn't until people asked me to describe these attacks that I realized it did sound horrific. Hot Poker stabbing into my eye, my skin feeling like it being cut with razor blades on fire, feeling like a thousand bugs are crawling on my face......and the migraines - I can't decribe the migraines. Is that bad? I don't know - how do you define bad? I know there are people far worse off than I am so I put up with, don't talk about it too much try not to let is define who I am.

Well here's the thing....the thing that brought me to this site. The pain is getting worse. The meds increasing (currently Tegretol 1000 mg/day, Topomax for migraines 100mg/day). In addition to this I'm waiting to see if I need a bladder repair (oh, how embarassing) and the whole situation combined with the meds has made me highly anxious / depressed. OK so lets add on an antidepressant and a bladder pill. Because of all this I have curtailed my social life and to top the whole thing off I get to look forward to my empty nest in a few short years. Whew! I am overwhelmed.

After years of letting my condition sit on the backburner of our life, my family can't figure out why I am tired all the time, why my migraines get so bad or why I am just not "me" anymore. I guess I better not tell them the meds make me feel dizzy like a hangover all the time, I can't sleep more than 2-3 hours without interruption or I don't go more than 2 hours without some type of TN attack.

Time to face some truths. Time to look harder for answers. Time to make my Physician get me on the right cocktail. Time to let my family in on what's going on.

Even after all this - I can handle the TN. I can't handle the constant pill popping and exhaustion. I can't handle the loss of control on my life.

I guess I am here to try to find out how other people have coped with the things that stem from TN. Dealing with family, having a social life with TN, dealing with depression and maintaing control and balance.

It feels great to vent. I look forward to hearing how my new friends have dealt with any of these issues.


Go to Frank Sherwood’s page…

My best advise is just what you’ve been doing. Do all the things that you are able to do. Do not give in to the condition and let it control you. But do be honest with your family about the way that you feel. It will help them give you the proper support that you needs. Take the meds when you need them and ask for a different drug if you do not feel it is the right one for you. Ask your doctor to help you find the drug that is the most effective with the least amount of sideeffects. This site is a constant source of information and support, use it. Good luck and pain free wishes coming you way!

Hi there - I went through a divorce not initated by me when I was 32. I reinvented myself - of course I didn't have TN then - I found having a new identity besides MOM - worked wonders on my soul - I redecorated my bedroom 70's style -- asked people to call me Kimberly instead of Kim - went to college - and went dancing every weekend to relive my stress. Then - 5 years later - my ex died - we were amicable at the time - and I had to just put one foot in front of the other for my kids... We all had pain - but my support system was grrrrrreat. This as I went through hell with my son being bipolar / high functioning autism - many many meds, doctors, it was the online support group that kept me alive.

I just got my masters in social work - kids almost raised - been dating a man for 8 years - getting married April Fools Day -- talk about PTSD -- I've been unmarried since 1995! I just got a govt. job and thennnnn TN Strikes -- On Lyrica - was tooo high -- On trileptal -- cognitive dulling but one solid month of pain is gone -- just as I got my life back -- it is depressing - and family support is sporadic because they don't get it. I feel like spinning out of control - depression -- just like you.

Do what you need to do for YOU - everything else will have to come secondary. Sorry to rant so long -- I'm trying to find my inner optimist - seems to be on vacation --- you will be okay -- make sure to advocate for yourself and keep your oxygen mask on!

Oh and there is that video that I'm going to share with friends and family on youtube about TN - its new and going to be aired on MSNBC - etc.