Some of you may know that I've had TN for going on 20 yrs and have been on Tegretol from the beginning. It was just in the past few years that Lyrica was added. From the beginning no one told me that Tegretol would increase appetite. So, it's been a "Catch22" being more hungry than normal and not being able to eat most of the time. I've done stupid things over the years like finding out I could put one square of Hershey's chocolate at a time in my back jaw (on good side) so it would go down my throat without touching my tongue. I wouldn't recommend this kind of diet! I realized that I needed to find more nutritional food! I find that I can eat most fruits & vegetables that have been put through a food processer & swallow very fast taking long intervals. My diet consists of fish, chichen, fruits & veggies (not many sweets). My point is that it's a sure way to prevent gaining weight. I'm wondering if some of the posts here are actually saying they eat more because of the meds or the same amount of food is consumed?
As far as exercise...I would never do anything because of the pain until one day I decided to pull some weeds in my front mulch after going out to get my mail. I ended up having my head down for a long time while pulling the weeds. When I went into the house....my pain was gone!! OK, I thought maybe this is what I should be doing more often! Since that day no matter how bad the pain is I force myself to get some kind of exercise if it's just walking off the pain inside my house or going up & down stairs until some of the most powerful ( 20+ minutes long) finally stops "electricuiting" me for a few minutes! I now ride my bike one to two miles per day and walk a lot. Somehow, this has helped me. I'm not saying that there were not times when exercising didn't make the pain worse but only 5% or so of the time that happened. If the pain is real bad some days and I get on my bike, it will be very painful for the first few blocks and then eases up & generally I'm better for the rest of the day. It's the same with eating....sometimes if you can get through the initial pain from the fews few bites....it gets easier & easier. I like to think it has made me "tougher" every year. I get angry and say to myself OK, lets just see how much I can bear before it eases & it actually has helped make me deal with it for so long. Hopefully, no one will take this this the wrong way. I also know we are all different!!
Some of you may not appreciate someone who has only gained 10 pounds since her teenage years & being able to eat anything but my point here is that I've actually lost weight since I've lived this way. Thanks for listening!!
Jackie, I agree with you, when you say it can’t get any worse. I would also say that for people who don’t have TN or ATN exercise can and does make you feel better and give you more energy. ( Long as you don’t overdo it). It is very difficult for me to get motivated to do when my mouth is just screaming at me. But just as if before I had this condition, I know that I will feel better after I am done. For people who have really bad arthritis, the recommendation is exercise…very tough to get going because they have to work thru that pain, and this is why many just cannot exercise and the condition may continue to deteriorate causing them to eventually be wheel chair bound. I will say that I have found I do feel better all the way around after exercising, but since the intense pain has returned- I have decreased cardio to 20 to 30 minutes and try to do 5 days a week versus 1 hr and 10 minnutes at 3 times per week. This has helped me greatly. Just my two cents worth. Min
I am with you Jackie, I have such a hard time rembering names. I had to really work at name recall prior to the medication. Now I can just forget it. Meetings are really hard for me because I can see in my mind what I want to say but to get it out of my mouth is another thing. There are some days when talking is such a chore I just choose not to do it at all. Which is really unusual for me. My problem is with my daughter. She gets so frustrated with me. Decisions I used to could just make without really thinking about it now I have to really take my time and work it out before I can say yes or no. Nothing seems easy now. She will say Mom you have done that a thousand times what is the problem. I say the medication. She says it is just a cop out. That I use this for evrything now. What she does not realize is that I am ten times more frustrated about it than she is. Now that she lives with us it is worse. I don't know about you guys but getting frustrated for me just makes things worse. The memory, speaking and on top of it all the pain!. I do not know what I would do without this forum to vent, and to know it is not just me. Thanks everyone!
Jackie said:
Jerry, you are not on your own with all these points. Many have told me just the same. I have gained weight, lost the ability to spell, can never think of the correct darned word I need and I never get anyone's name right, I forget who they are!!! We are all still very viable human beings with much to offer, don't be so hard on yourself. It will have made you more compassionate I bet.
I have had some struggling points with food, even tho I am on an anti-depressant. I have had binges of using food as a comfort for the pain and depression. Not a pretty sight. But I keep getting back on that treadmill to combat the low times. I will say now that I have gotten some relief from the pain, I don’t go on binges as much any more. The exercise and diet is all a part of being well, as well as we can be anyway. My point is, if one is depressed that can add the pounds as well as the meds for pain. Double whammy!!! Not fair, I know…Min
My doctor gave me ritalin for focus and energy during the day – helps !!! Less hungry too
Mary Christman said:
My daughter talked me into a gym membership. But after work I am so tired I cannot make it to the gym. She gets so mad at me. I just wish that my energy level was up. I wondered which of the medications it was that made me gain. I am taking 600mg 3x a day of Neurontin. I cannot increase it any more and work. By Friday I am so exhausted that I go home and go straight to bed. I am one that used to stay up until 12 or 1am knitting. Now I am in bed by 8 or 9. My family gets so frustrated with me.
OHHHH ceiling fans - they were my friend… BUT they say something like 3 bites of anything will stop the craving — my fav is a few dark choc chips melting in mouth boosts mood and stops craving for sweeeeets!
Mary Christman said:
Sometimes it just does not seem fair that we have one more thing to struggle with. When the pain is in the background it sometimes makes me so anxious that I eat for whatever reason trying to make it go away or just in the anticipation. I am a stress eater now which is exactly opposite of when I was young. The ceiling fans and AC seem to set my ATN off. Which means more drugs and more of the side effects.
This is a very relevant topic for many of us, because the medications we take often DO make us gain weight very quickly!
I've gone from a size 3 to a size 8 in 6 months (U.S. sizing)! Not good! People say I look better, but I really want to fit into my clothes again! A size 6 would have been just fine with me!
I know I cannot give us my beloved Diet Coke. I crave sweets ALL THE TIME!!!! (a the remnants of a Turtle Pie are calling my name in the fridge as I type)!
I’ve been having a reprieve from the constant stabbing pains, but even so, when I had to take the meds, I would eat much more than usual. Now I’ve found a way to discipline my appetite by planning ahead. I’m now in Weight Watchers online, and am making healthier choices by getting creative with my meals. Lots more fiber (that fills me up), fruits and veges. The points plus plan really isn’t restrictive, just very good for us. Keeping track of my intake and activity level gives me a feeling of control that I seemed to have lost when I felt I couldn’t fight the medication induced cravings. Now, by planning ahead, I can keep myself on track. I lost two pounds in the past week. Yippee! (and I’m 62 years old and a size 4 is a memory from when I was 35 years old, so it’s been quite a while. I shooting for a size 10/12 now.
Stef said:
Wow, yes!
This is a very relevant topic for many of us, because the medications we take often DO make us gain weight very quickly!
I've gone from a size 3 to a size 8 in 6 months (U.S. sizing)! Not good! People say I look better, but I really want to fit into my clothes again! A size 6 would have been just fine with me!
I know I cannot give us my beloved Diet Coke. I crave sweets ALL THE TIME!!!! (a the remnants of a Turtle Pie are calling my name in the fridge as I type)!
Hmmm, ritalin gives you energy? I always thought it was used to calm down hyperactivity. I may have to check into it. I just hate to add another medication. Thanks for the advice.
Mary
Kc Dancer Kc said:
My doctor gave me ritalin for focus and energy during the day -- helps !!! Less hungry too :)
Mary Christman said:
My daughter talked me into a gym membership. But after work I am so tired I cannot make it to the gym. She gets so mad at me. I just wish that my energy level was up. I wondered which of the medications it was that made me gain. I am taking 600mg 3x a day of Neurontin. I cannot increase it any more and work. By Friday I am so exhausted that I go home and go straight to bed. I am one that used to stay up until 12 or 1am knitting. Now I am in bed by 8 or 9. My family gets so frustrated with me.
I tried ritalin also but it had the opposit effect. It made me even more sleepy. I tried provigil and it was helpful. But it is no longer covered under medicare or madicaid and it is over 200.00 a month.
I logged in here tonight to ask if any of you know whether vibration exercise machines (supposed to be great for muscle toning and weight loss) are contraindicated for someone with TN? I have searched the web and cannot find any reference anywhere to this question but it seems logical that vibration will set off the TN. As I am as good as in remission at the moment, only the odd flurrie now and again, I am loathe to take a chance. I was thinking of hiring one of these machines for a few weeks to give my weight loss efforts a good start and perhaps motivate me to continue, before the pain comes back and stops me dead in my tracks. Since my fight with Tegretol, Lyrica and Amylltriptiline (sp?) I have regained all of the weight that that allergy caused me to lose plus some. As a large lady before that, I really cannot afford this extra weight gain but it's going on so fast it's frightening. So I joined a gym but I really want to try those vibration machines at home as well. Does anyone know the answer?
If you truely have ADHD it slowsssss you down like it did for my daughter — but if you do not have it – it’s the opposite effect. There are other focus meds too – I just needed energy + focus + a little less hungry!
Mary Christman said:
Hmmm, ritalin gives you energy? I always thought it was used to calm down hyperactivity. I may have to check into it. I just hate to add another medication. Thanks for the advice.
Mary
Kc Dancer Kc said:
My doctor gave me ritalin for focus and energy during the day -- helps !!! Less hungry too :)
Mary Christman said:
My daughter talked me into a gym membership. But after work I am so tired I cannot make it to the gym. She gets so mad at me. I just wish that my energy level was up. I wondered which of the medications it was that made me gain. I am taking 600mg 3x a day of Neurontin. I cannot increase it any more and work. By Friday I am so exhausted that I go home and go straight to bed. I am one that used to stay up until 12 or 1am knitting. Now I am in bed by 8 or 9. My family gets so frustrated with me.
That's the word "satisfy". I can cut down on food and drinks and lose a few pounds. But then there are days when I just cannot satisfy my hunger, and hunger isn't really the word, as I'm not hungry, and I eat anything I have in the house, which really isn't anything tempting, since I'm trying to get weight off.
