Just need to vent

I'm getting fat. I've gone up and down in weight my entire adult life, ranging from 120 to 150. But never have I gotten as heavy as I am now (185). I've cut my meals in half, not in frequency, but in size, and it still seems to be accumulating. I'm starting to become depressed, and the self-loathing is apparent, as well. I really don't know if it is the Tegretol, or if it's my age, or something else, but it's increasingly frustrating....

I had surgery the first week of October on my foot. It's an ongoing thing - my foot has been operated on 7 times in the last few years. This makes any walking and exercising difficult. I'm hoping they've finally gotten me to a point that will allow for those things as it does make losing weight much easier. Strangely enough, there was an upside for my face during this ordeal. I found that when I loaded up on codeine, I felt nothing in my face. However, I don't think I felt anything - anywhere. I don't think I want to spend the rest of my life on vicodin, but it was nice for a week to not feel pain.

Today I'm dealing with a burning in my lips that seems pretty constant. I don't know what this means. I've never really been told what type of TN I have, just that I have TN and here, have some Tegretol. It does seem to keep the worst of it at bay, but every once in a while I still have a day where the pain breaks through. Stabbing pain, right inside my ear -- and then in the middle of my cheek, etc. I don't know what this burning sensation in my lip is though....

I only see my neurologist every 6 months. I don't know why -- it's his schedule, not mine. I don't like to call when I feel something new. I guess I already know the disease isn't life-threatening, and I've been lucky so far. Only recently diagnosed a few months ago, I don't think I've experienced the worst of it yet. That scares me.

On a lighter note, I'm due to be a grandma in the next 2 to 3 weeks. My first of course, as I'm only 39. =) We already know it's a boy, and his name is Lucas. I can't wait to hold him.

Ok, done rambling for now. I might be back later, or I might not. You just never know.... Have a great weekend to anyone that reads this!

Hi Marcy, I have been on tegretol for 8 weeks and I have gained 12-14 lbs. I am 39 yrs old, too!! On one of my first blood test they notices my blood sugar levels was high and white blood count was low; Now, after 5 weeks of checking my bloods sugar daily, I know the tegretol is effecting me!! Have they kept yours in check? It scares me to take it after reading up on it, it can lower your white blood cells that will keep you from healing as fast as you should or worse.

We all need to vent, Marcy.

It is a coordination of schedules - a) the meds work you don't see him often. b) the meds don't work you see him often. In the mean time, keep a journal, even print these pages and bring them with you, when you "Talk to YOUR Doctor"!

Your discussion of Tegretol and Mental Clarity,...for weeks, I tolerated 2ND degree burns (from Carbatrol/Tegretol) over 60% of my body, because it was more acceptable than "idios". Few people walk along with me on that talk.

Hope the medications work, take as directed, Grandma;) -- and STOP WORRYING! My best, bob

I found that Tegretol made me gain weight. I've lost 16 lbs since I stopped taking it after my MVD. The bottom line is that it is the most effective drug for most sufferers. Weight gain or pain.....I'll take the weight gain thank you very much. Grand children are the best thing ever. He'll change your life in a great way.

Bob -- what does your last paragraph mean? I'd be interested to hear more about that...

And thank you Jim. I joke about gaining weight to everyone else, telling them I'm putting on my grandma fat. Nobody likes a skinny grandmother, right? =)

I don't think I'm quite ready for any surgical procedures. This affliction is only a few months old, and it hasn't progressed so much that the Tegretol doesn't work. And yes, I choose chubby over pain, too!!!

Have a great day!


I was working at a nursing facilty as an LNA when I had my "toothache". I developed Toxic Epidermal Necrolysis from Carbatrol ( http://www.livingwithtn.org/photo/albums/toxic-epidermal-necrolysis ) and for weeks, found "that pain" more acceptable to the "face pain". I covered my arms, wearing long sleeves under my scrub top,...the Director of Nursing became suspicious, and sent me to the ER.

In April 2007 – For a different prospective in dealing with my PAIN, (TN1 and *Toxic Epidermal Necrolysis) I referred myself and “visited” with a psychologist for five (5) “sessions”. Exhausting fishing stories, he referred me to either a psychiatrist, or a pain management center. He was a pleasant man, nervous with me at first. I mentioned to him that he was picking up and mimicking my teeth-grinding at the last appointment that I scheduled.
*IVIG and Cyclosporine NO OTHER MEDICATIONS. This “.” means PERIOD!

Is that what you meant, or the STOP WORRYING part? :P) bob

Wow. Now I understand. And no, the “stop worrying” part was pretty easy to grasp. =)