I have only been diagnosed a short time ago but I have been gaining weight rapidly and am very concerned. I was not sure if having TN was the cause or if it was the medications. I have gained 50 lbs in the past 4 months! Has anyone else had this issue? If so what did you do about it?
The meds are a huge factor in TN weight gain.
Also ,at least for me,i was housebound with little to no activity other than be as still as possible so as not to cause an attack.
Proper nutrition was the furthest thing from my mind.You might try protein shakes with fruit.That helped me a little.
Thanks for your response. I will try the protein shakes. You are right during an attack weight gain and proper nutrition is the furthest thing from my mind too. I still have so many issues with balance that I can't walk around the neighborhood or on my treadmill. I really do sit a lot and worry about having another zap of pain.
It also can be the result of the lack of meaningful sleep or “Rem” sleep. This leads to fatigue and adds to the difficulty in getting exercise. I developed sleep apnea and became diabetic from weight gain before I was finally diagnosed with Type 2 TN. After getting treatment for the sleep apnea and losing weight I was able to shed the weight and control my diabetes. I also no longer suffer from sleep apnea. Unfortunately I’m not sure what came first the apnea or TN. I still suffer the pain of ATN but at least I have the other conditions under control and when the pain goes away for brief periods I get a good nights sleep and have energy during the day. Looking thinner does improve my self image and helps me cope with our terrible disease. I would get checked for a sleep disorder or sleep apnea, it may help. I still remember how great it felt to get a good nights sleep. Good luck!
HMB
Have your thyroid checked. I was on Synthroid for my hypothyroidism for years before I got my TN last year and it was always easily and well controlled. When I was put on Tegretol, it interacted with my Synthroid meds and basically cancelled it all out. I gained a little weight but would have gained even more except that I work as a fitness instructor so was still teaching spin classes. Many of the side effects to of hypothyroidism are similar to those on anti-seizure meds like being exhausted all the time. My doctor picked up my thyroid issue in my checkup after my MVD. I'm still on an upped dose of Synthroid and am being checked every 3 months for that. I went off the meds all the way in January and I think that my thyroid is finally back to normal (I have my dr. appt next week to check).