BED and Topamax

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Are there any diagnosed binge eating disorder sufferers here that take Topamax to stop the binges?

I've been diagnosed with BED, (well technically Eating Disorder-Not Otherwise Specified until the DSM-V comes out) since last year, and I've been taking Topamax now for about 3 months to stop the binges.

Topamax is anticonvulsant drug for seizures, commonly prescribed for migraines A side effect of the drug is anorexia- it kills your appetite. So, some doctors have been prescribing it for people with BED to counteract the disorder to "even them out" so to speak.

Anyways, the point of my post is to review the drug for my disorder.

And it has really been helpful! I don't binge nearly as often. I eat when I'm hungry and stop when I'm full. Mind you, my brain still wants to eat, but physically I just can't and the urge isn't nearly as strong as it used to be to finish the entire bag, etc. I still sometimes have the occasional emotional binge and I do have occasional regular binges, as I still have a ways to go in therapy, but this has really been helpful. This med was definitely the way to go because I've tried all the psychotropic medications like Prozac, etc first, and they did nothing for the constant urge to binge.

Perhaps it's a tool you can use if you are like me and have tried everything and if you have a bonafide binge eating disorder.

Good luck!

And I'm always looking for BED in recovery for support :)

Replies

  • runner4546
    runner4546 Posts: 33 Member
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    That's interesting to hear. My 22 month old son has been on Topomax for over a year now for seizures - and we're always trying to get him to gain weight (he has a feeding tube which we are trying to get rid of, but hard when the med kills his appetite!)
    Glad that it's working for you. Word of warning - it can be hard to go off of it so don't go cold turkey when you are ready. You need to wean down slowly!
  • Lobster1987
    Lobster1987 Posts: 492 Member
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    Thanks for the reminder. Yeah, you have to build up slowly and go off slowly. I don't want to go off of it anytime soon. It is working so well.

    Try some very high calorie foods for him. Poor baby, it's sad that he suffers from seizures :(
  • BellaBoo135
    BellaBoo135 Posts: 17 Member
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    Runner, my son was also on topamax for several years for seizures. From about age 2-4. He also had a hard time gaining weight while taking that drug. He will be 6 at the end of February and has been off of it for about 2 years. He can now out eat me and his 11 year old brother. I never noticed many side effects other than that. However his neuro did mention that it can cause irritability.
  • PumpGertrude
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    In addition to taking the Topamax, I suggest you read "Brain Over Binge". It's a book by Kathryn Hansen, a former bulimic, who used Topamax to get her started with not bingeing anymore. I read the book and using what I learned in it was able to stop a problem with binge eating (yes, I've been diagnosed with BED) that I've had since I was a teenager. Hope it helps.

    ETA: I did not use Topamax to stop my bingeing. Applying what I learned was enough to stop the binges. Kathryn's use of Topamax got her started, but she figured the rest out on her own.
  • Lobster1987
    Lobster1987 Posts: 492 Member
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    I'll have to look that book up! Thanks!
  • NOLA_Meg
    NOLA_Meg Posts: 194 Member
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    I took Topamax for seizures, so your dosing is probably less than what I was on, but I would urge you to know the other side effects. For example, it raises your internal body temperature but decreases your ability to sweat-- basically you always feel cold and your body has no way of regulating your temp especially if you are working/etc in warm temps. Also, it can cause "fuzzy thinking." I did lose weight on it- 85 pounds or more- I was never hungry. Also, I slept all the time. ALL the time when I wasn't physically in motion or in class. Shower? asleep. 30 minute car-ride? asleep. Friends over after school? aslepp. Although, it seems you have minimal side effects and I'm so glad it works for you and is helping you get better!
  • MaggieSporleder
    MaggieSporleder Posts: 428 Member
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    My best friend is on Topamax for Migraines. She's lost like 40 lbs in the last year, cause she just doesn't want to eat at all. I'd be careful with this stuff, seems like it could be dangerous.
  • Zekesmom
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    I have been on Topamax for 5 years now for my epilepsy. The first year I noticed weight loss, though not dramatic in any way. Back in the summer my neurologist upped my dosage to 200mg x2day and I didn't eat for almost a week. All I did was drink. Even the smell of food made me want to vomit. I also wanted to sleep a lot and I had what I called the ghosts. I had a lot of white tracer like shadows every time I looked around. I couldn't make proper sentences, couldn't think straight, couldn't even remember basic things. Thankfully those side effects have gone away and I am back to normal.

    I have never of heard of Topamax being used for BED though. I have a friend who is a severe binge eater and I am going to talk with her about this. I don't think this has ever been recommended for her, so maybe it would help.
  • Zekesmom
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    I took Topamax for seizures, so your dosing is probably less than what I was on, but I would urge you to know the other side effects. For example, it raises your internal body temperature but decreases your ability to sweat-- basically you always feel cold and your body has no way of regulating your temp especially if you are working/etc in warm temps. Also, it can cause "fuzzy thinking." I did lose weight on it- 85 pounds or more- I was never hungry. Also, I slept all the time. ALL the time when I wasn't physically in motion or in class. Shower? asleep. 30 minute car-ride? asleep. Friends over after school? aslepp. Although, it seems you have minimal side effects and I'm so glad it works for you and is helping you get better!

    I remember the sleep issue...seemed like the first 6 months I was on it all I did was sleep. I don't even remember most of those 6 months :( What makes me really sad about that is that it was the first 6 months of my son's life. They had taken me off Gabapentin and put me on Topamax because of severe side effects.
  • Lobster1987
    Lobster1987 Posts: 492 Member
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    I took Topamax for seizures, so your dosing is probably less than what I was on, but I would urge you to know the other side effects. For example, it raises your internal body temperature but decreases your ability to sweat-- basically you always feel cold and your body has no way of regulating your temp especially if you are working/etc in warm temps. Also, it can cause "fuzzy thinking." I did lose weight on it- 85 pounds or more- I was never hungry. Also, I slept all the time. ALL the time when I wasn't physically in motion or in class. Shower? asleep. 30 minute car-ride? asleep. Friends over after school? aslepp. Although, it seems you have minimal side effects and I'm so glad it works for you and is helping you get better!

    I'm always freezing, so I haven't noticed any body temp changes, although it sure would be nice if I would warm up!!! Yeah the only side effect is the tingly fingers and feet....and obviously loss of hunger.
  • Lobster1987
    Lobster1987 Posts: 492 Member
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    I don't think im any more tired than usual. I work an over night job and another part time job on top of that, so I am pretty tired with that, so I wouldn't think its a side effect of the med.
  • cupboard_stalker
    cupboard_stalker Posts: 62 Member
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    My daughter was on Topiramate (uk - think its a generic version) and she had to come off it because she lost too much weight and became underweight and stopped growing which was not good for a 7 year old.

    I heard it was used for migraines, but not BED. I'm glad doctors are thinking "outside the box" for different medications it means there might be more research done and maybe that will lead to a new drug.
  • XXXMinnieXXX
    XXXMinnieXXX Posts: 3,459 Member
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    I had a Binge Eating disorder. I took no meds. I saw a therapist, got some cognitive behaviour therapy and above all had a very strong desire to change it and decided that I just wasn't controlling my life anymore. That light switch flicked, I realised I deserved better!

    I've now got to q point where I do it maybe once every 2/3 months, but quite quickly think about why I'm doing and realise it's not helping so my binges are now nothing more than a splurge, never a big binge.

    You have to find our what you enjoy in life (for me music, walking, mfp, cooking) keep yourself busy with things you enjoy and question your thought patterns. I gained 100lbs in just over a year, but with therapy, determination and a lot of will power I've totally overcome it. I don't think I would have liked the idea of a medication, think it's better to work on the psychological aspect and get to the route of why you do it.

    Zara x
  • Lobster1987
    Lobster1987 Posts: 492 Member
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    @ Minnie, just therapy may have worked for YOU, but therapy alone did not work for me. As you may have missed, I tried everything and the mix of medication and therapy is working wonderfully for me.
  • kelly_e_montana
    kelly_e_montana Posts: 1,999 Member
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    I have been in therapy and have read Brain Over Binge. I have not tried Topamax. My ED counselor suggested it but was not sure of the right person in my town to prescribe it to me since it's an off-label use. I never tried it and now don't have health insurance. If you (other people than OP) do try it, please get back to me. I would like to hear your feedback.

    I have lost weight and decreased binges when on Zoloft but it also makes me feel strange and I act erratic, so I don't take anything now.

    Unlike Minnie, I have not had excellent success with cognitive behavioral therapy. I really feel like something is wired wrong. I've been working on this for 20 years.
  • spamantha57
    spamantha57 Posts: 674 Member
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    This is interesting to learn - I've heard of Topamax (my mom was prescribed it once) but I hadn't looked much into it. Thank you for sharing. I have somewhat a history to B&P that I've only dealt with on my own, & probably could never be anorexic if I wanted to. I like to sleep & usually don't have a lot of energy anyway so maybe this wouldn't be a good option for me to try... I'm definitely interested in learning more about this though, especially because I'm studying to be in the health/ fitness/ nutrition world & myself having been on different meds (depression, insomnia, anxiety disorder) I think it's important to take all those things into account when someone is trying to better their overall health.
  • IHAVEPMS247
    IHAVEPMS247 Posts: 70 Member
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    I have been taking topamax for years for migraine prevention. It does have nasty side effects. yes, you do lose your appetite, but that usually doesn't last long. If you get put on a high dose, your feet get tingly (annoying, but livable). I have brain fog with it, I really feel at times that I have delayed mental abilities. Unable to come up with words, express myself and even remembering things that I know should be second nature to me. I have seen specialists who tried taking me off topamax but my migraines came back and were unmanageable. So, I had I opted to go back on the medication and deal with these symptoms. Just mentioning this, should you find yourself with similar reaction to the medication and trying to figure out what might be causing it.
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