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Topiramate and Weight Loss

I had this discussion with my doctor and he was not too concerned, as I have always been a little overweight; but I am a little worried because of the quickness of my weight loss since I have been on Topiramate. I was 165 pounds when I started taking this drug. Now I am sitting at just below 140. I started the medication less than two months ago, and I am on a dose of 100 mg. twice a day. I have fought with my weight for most of my life and have never had this type of weight loss in this time frame. Usually for me to lose this amount of weight, it takes me at least five months of hard dieting and exercise because of my bad gene-pool. My diet has not changed (aside from me eliminating more meat and adding more fruits and veggies, and incorporating more juice), and I am not taking any other medications that might have caused this weight loss. Is this weight loss going to continue or is this just a temporary side effect until I fully adjust to the medication? Should I be worried? How much weight loss is too much with this drug? Any advice is appreciated and happy new year :-) Regards, Kat

Comments

Re: Topiramate and Weight Loss

Hi I'm Kate, I started Topamax about 2months ago too.  I had the same side effect when I started the medication. The most weight loss I had was during the transition time when I was changing medications. After I transitioned and adjusted, my weight was fine. I'm nearly to my full dose, and my weight has leveled out pretty well with 5lb lost here and there.

I would let your doctor know you're rapidly dropping weight. 

Re: Topiramate and Weight Loss

Kate,

Nice to meet another Kate :-) I have let my doctor know and he wasn't too concerned. But that is where I am worried. His lack of concern bothers me. I have never had a weight loss this rapid in my life. And my diet changes are too recent to merit such a fast drop in weight. I only made these changes a week ago, so there is no way that this weight would be dropping this fast on diet alone. I weighed myself today and I am at 137. I stand 5'6, and I do not look good at this weight.

I am going to monitor my weight for a few more weeks and see what it does before I speak to my doctor again. He spoke of possibly upping my dose again at the next visit, and that should be an interesting experience.

I do not want to get my weight down so low that I begin to look like a stick figure and my shoulder bones start to stick out. At Christmas my family was making comments about me needing to eat more, and asking if I had an eating disorder; which really bothered me. They like to see me healthy and they are not used to seeing me under 150 pounds- my average weight. I had to actually wear bulky cloths to try to hide it so my Grandmother didn't worry too much.

Is there anything I can do to maintain the weight I am at? Maybe a supplemental drink, like the ones bodybuilders use?

Regards,
Kat

Re: Topiramate and Weight Loss

Research the drug and its side effects. If you are really concerned about the weight loss, go to another doctor for a second opinion. This site is a great network and can really benefit you.

 I've heard some people take another supplement or medication of some sort for weight gain to balance out the weight loss side effect.

Re: Topiramate and Weight Loss

the drug I'm on currently seems to work very well for controlling my seizure activity. I'm grateful for that, but the weight loss is a concern. Maybe I should be taking a supplement to balance that out because I do not want to lose any more weight. It is not healthy for me.

I did talk to a person at GNC and they said that they had some good weight-gain drinks that would help me maintain the weight I am at, and I am going to investigate that option.
I am hoping that maybe I can stay at this weight and not lose anymore if I can get on a drink. I don't mind being at the high 130s. I just don't want to go any lower.

Thank you for your advice, I will speak to my doctor again and will check out the supplement option tomorrow when I do my errands.

Regards and Happy New Year!

Kat

Re: Topiramate and Weight Loss

Hi,

These postings struck a chord with me because I began taking Topamax in August of 2010. It is the 1st AED that I have been able to tolerate that has kept my seizure activity under control and for that I am grateful. It was only in the past two+ years that epilepsy became an issue for me although in hindsight, I realize that it is something that I suffered from all my life, it just wasn't apparent be/c it wasn't manifesting itself as complex seizures. There is a family history of epilepsy--a brother and sister both have it. So, there's some background. I have battled with eating disorder and body image issues as a teen and in my early twenties, and did a lot of internal and therapeutic work to "heal" from that sort of destructive thinking toward myself. I grew to really love my body in whatever state it was in, even through two pregnancies, and had accepted that after my 2nd pregnancy, I was never going to be a size 2 again (I'm petite, small framed). Plus, with a thyroid disorder, to be thin would be working against the tide of my body. So, I had embraced my size 8, 5'2, 129 lb. body. Then I started the Topamax in late August. I am now down to 116 and a size 4. The neuro doc and my GP aren't too concerned about it--but then neither of them know about my history of having an eating disorder. They both say it's my decision to make regarding whether the seizure benefits outweigh the other side effects. I am really in a quandary. I haven't been able to tolerate the other 4 medications I've tried, so I'm loathe to fiddle with my meds. My HMO denied my request to see a nutritionist to help me with meal planning, etc. Yet, the Topamax has definitely suppressed my appetite. I can go a whole day and only eat one full meal. Large meals make me feel sick to my stomach. Many foods taste strange, or downright bad. Chocolate and coffee taste horrible, and many other things taste bland and make me want to over salt my food. Not good for my blood pressure. I eat a lot of protein, crave fatty salty things, and would love to carb load, but I'm a celiac (yeah, I'm a real piece of work, aren't I?!)--so mac-n-cheese isn't an option. That gluten free kind just doesn't cut it. My hair is falling out, I'm tired and no longer as physically strong as I used to be, and I feel this can all be attributed to poor nutrition at this point.

Keeping a garden and cooking the fruits of my gardening labors are some of the great pleasures of my life, and a big inspiration for me, so the quality of my life has gone down--thus contributing to a flatness in my life and a deepening feeling of depression. Depression is something that the epilepsy has always made me battle with. About the only thing the neuro could suggest was giving me an antidepressant, but reminded me that this could lower my seizure threshold (real helpful guy). I feel that if I could get some help with menu planning and find a support group (this whole epilepsy thing is still a pretty new realization), that I could turn a corner and get some weight back on.

So, sounds like this rapid weight loss is very common with this drug. For other people, has it come from food tasting bad? Just not being hungry? A combination? Would love feedback and thoughts on this and any of the above.

Thanks and best New Year wishes,
Monika

Re: Topiramate and Weight Loss

Monkia,

Yeah my appetite went downhill fast, but I try to keep foods handy that make me want to eat. Recently my friend and I went to a a fruit market and got some fruits and I've been drinking a lot of smoothies, which seems to help me a lot with my energy and mood. And when all else fails, my brother (and room-mate) made a "cheat" menu... made up of foods he knows I will eat when I am not hungry and don't want to eat- i.e. KFC snacker bowls, Arby's roast beef n' cheddar sandwiches. And while it may seem expensive, if you watch sales, usually there are coupons and sales on them, they are not really that expensive. So it works out pretty good, and they keep well in the fridge.

Have you informed your GP or your Neuro of your history? They are going to put me on a weight gainer drink if I lose 6 more pounds. If I wind up going on this stuff, I'll let you know if it does anything for me. I will warn you though, the stuff they had me get is like $70 a bag. It's worth it if it gets me in a healthy weight range. (plus to be honest, I can't afford to keep myself in cloths either if I lose more weight I will have nothing to fit me ><)

Regarding taste, I know how you feel. I used to love the occasional bit of dark chocolate. Now, I cannot even taste it. My brother got me a chocolate bar the other day and I could not even eat it. I used to enjoy sinking my teeth into a square of chocolate. It tasted like sweet heaven. I noticed it with my Mom and Grandma's cake at Christmas too. They used my great-grandmother's recipe and made her famous Lane Cake. For some reason, my taste buds do not recognize sweets like they should. It was really odd for me. I am beginning to think that I've lost my taste for sweets in general.

As far as your hair falling out, I am not an expert but what kind of hair products are you using? I have a neighbor that has an issue with hair loss and she uses equine (yes horse) products on her hair. They have more protein and other nutrients that boost and strengthen her hair and lessen the effects of her hair loss. She buys them at her local tack shop. I actually use them on my hair as well, because I color my hair and they are wonderful. Maybe that would help you a little bit?

Regards,
Kat

Re: Topiramate and Weight Loss

The amount of weight lost and how long it goes on tends to vary by the individual from what I've read about the drug and from what I have read on other boards about others' experiences on Topiramate.

Before I developed epilepsy in June of this year (no family history, no explanation as to why), I was a healthy 115 pounds. I stand 5' 3" tall and am very small-framed. Since I had two seizures intially and the EEG was not normal, the neurologist started me on Keppra (supposed to cause weight gain!) which caused me to drop to 110 pounds.

I continued to have seizures (tonic-clonic) and had terrible headaches from the Keppra, so the neurologist decided to take care of both issues by adding Topiramate at 100 mg a day, which ended up having to be upped to 200 mg a day.

The first month I was on it, I dropped another 5 pounds--I didn't really see the major weight loss until month 4 when I dropped 11 more pounds. I've lost about 4 more pounds this month, though I attribute that to the stress of being laid off at work since I am the sole breadwinner and so on. I've leveled off in my weight loss through eating 5 small meals per day, drinking Ensure 3 times a day (expensive but worth it), and doing weight training (so I don't look so thin). It doesn't look too bad since I am small framed to begin with, but I probably would look too thin in something that was revealing.

If you do go on a regimen to gain weight, stick with high protein foods and a balanced diet instead of fatty foods.

I don't like weighing 96 pounds, but it's worth it to me to have the tonic clonics under control since I need to be able to drive and this drug has made it able for me to get my license back. I have done a great deal of training to get my legs and lower body toned so I don't look too thin; now I am working on my upper body ( a bit harder) to build some muscle so I don't look so thin. I generally wear fitted pants with a heavy sweater (luckily it's winter) with a vest to add some bulk up top.

Consult with a nutritionist if you don't think your doctor is listening; most doctors do not get much training in nutrition. I was told that my amount of weight loss was pretty extreme based on the relatively low dose that I am on, but I tend to be very active and have a high metabolism. Monitor your weight regularly, and definitely let the doctor know if you think you are losing too much weight on the medicine.

In my case it's a hard call. I know I've probably lost too much weight, but I am in the middle of a job hunt and am doing lots of driving to various interviews since the job market is not very good in my area and I do not want to mess with my medications at this point and end up possibly having another tonic-clonic seizure at this point. I've discussed it with my neurologist and he is also reluctant to drop the dosage of the Topiramate right now...I'll wait until things are more settled in my life to work on the dosage reduction.

Good luck to you.

Re: Topiramate and Weight Loss

Right now, I have gotten resistance from my neuro regarding my concerns about my weight. Apparently he does not think it's an issue if I become a super skinny. But for me to be under-weight, it is. I have set my bottom weight number at 120 and if I hit that number, I am going to make him see me and address this because it will put me under what my weight should be. So I went ahead and spoke to my GP today... and even she was a little shocked about my loss. I go get weighed in on their fancy digital scales tomorrow and find out how much I've lost to the tenth of a pound in about 8 hours.. (yes it's 3:37am and I am having a bout of insomnia.)

I have an appointment to meet with a nutritionist from my GP's office at GNC tomorrow and I have undergone a diet change with more veggies and fruits, including slushies and smoothies. The nutritionist actually thinks I should go on a weight gainer shake once a day (breakfast) to see if that makes any difference in balancing out the effects of the medication. From that point if that does not work, they will up the gainer shakes to more than once a day.

I guess the weight loss would be ok with me, if I felt that it was healthy for me to be this size. My friend told me that I should be happy that I am this weight but I am not because I know that it is unhealthy for me. Does that make any sense? I look in the mirror and I can see my ribs. I can see a lot of my collar bone. One friend told me I was making a mountain out of a molehill. Am I? I really don't think I am. My goal is just to be healthy. I don't want to be in bikini shape, or appealing to the eye. I just want to be healthy and happy.

In your case, I can understand why you would let yourself be ok with being that small. I can sympathize. Any dose reduction definitely needs a bit more stability. When they were upping my dose I took it very easy and didn't do much because I knew that adjusting to the medication was going to be a trick. How did you manage to lose weight on Keppra? Any time I have heard people talk about that drug, it's always been about how it's made them blow up.

Thank you for your advice and input :-)
Happy New Year and Regards
Kat

UPDATE:

Here we go.... the scale don't lie. I am at 136. And they told me that my bottom weight number should be no lower than 125. They said that I should be drinking this stuff called Pro-Complex Gainer once a day for two weeks if my weight hits 130. So I went ahead and picked some up at GNC. Also they put me on a prenatal vitamin to make sure that my vitamin levels stayed within a good range. That kind of confused me. I thought that a good multi-vitamin did the same thing?

Re: Topiramate and Weight Loss

It actually makes a lot of sense to me...I think that your concerns are valid, and that we all have a weight range we are comfortable with and feel best at. Not everyone wants to be stick thin, and personally, I would prefer to be bit more robustly built with more curves than I have naturally!

The weight gainer shakes sound like a good idea; they have helped me maintain my weight, and from what I have read of others' experiences, have actually helped them gain back some of the weight they have lost while on Topamax. If one a day doesn't do it, the nutritionist will probably up it to two per day.

I don't think you are making a mountain out of a molehill...if you are not happy with how you look/feel, it's your body and you are the one who knows it best. I can also see some collar bone and ribs (though it's usually this way) and it can be kind of disconcerting if you aren't used to it.

LOL...I have also heard many stories of how Keppra is supposed to make one gain a LOT of weight but it didn't do that to me...the neurologist was kind of suprised that I had actually lost weight on it and did say that a very small number of people lost weight on the drug and mentioned something about me having an unusal reaction to it. I must have a strange body chemistry or something because I generally don't get the side effects most people do, but instead get the odd ones...Topamax has been the only one that I have gotten the normal side effects (weight loss) from.

Interesting you mention the small weight losses during the day...my weight will fluctuate during the day, and I will actually lose a pound during the night but gain it back during the day...go figure how one loses weight while sleeping???

I hope that your nutritionist and you can work together to help you get back to a weight that you are comfortable with. I've basically been told by the doctor to not let my weight drop below 92 pounds, but I certainly don't want to get THAT skinny! The pre-natal vitamin is actually a better choice since it has much more nutrients in it, and some of the nutrients in it are said to be able to help counteract some of the side effects of the Topamax...so stick with the pre-natal vitamin, even if you aren't pregnant or planning on it.

Good luck with everything...I am glad you are working with a nutritionist and your doctor. Happy New Year!

Re: Topiramate and Weight Loss

I love my curves. I think they make me look good. When I was in school I was in a lot of athletics and I got used to having an athletic build, and I have tried to keep it up since then. I like to have a little bit of build, and I still try to do a lot of outdoor activities like hiking, biking, and what I call cardio/weight-training (aka leash training my 90 pound dog). So when I lost this weight and my body started to change I was kind of shocked.

I am not sure if my weight loss during the day was just a glich in my scale or the accuracy of their scale. I am thinking that it was more on my end with my scale. I have never quite understood how people lose weight while they are sleeping. One of my friends is morbidly obese and loses weight in her sleep, but that is because she takes a drug that helps her do so. Can't remember the name of it (imagine that... yay for memory loss)but it seems to happen in some cases. She's lost about 200 pounds because of it though, so I consider it a wonder drug.

The Nutritionist and the representative at GNC told me that the stuff I bought is supposed to be the best stuff on the market for weight gain so I am crossing my fingers. My brother did some research on it and found nothing but good comments on it too. I started the prenatal vitamins too, so I am hoping they make a difference. Maybe my energy levels will increase. I am going to keep working with them to make sure my weight stays at a comfortable level. I am interested to find out what my blood levels are when they results come in. I'm particularly interested in seeing how low my iron and b-12 levels are.

With Keppra, maybe you do have strange body chemistry, and that is the reason why you didn't have a mass weight gain. That would be the only thing I could think of. I had a similiar "body chemistry" reasoning given to me by a psych. He had given me a standard dosage and I had severe wicked mood swings for days ( 0 to ***** in 2 seconds). Someone would look at me and say something nice, and I would look back at them and tell them to go screw themselves (except not so polite). At one point I got so enraged I actually punched a hole in a bedroom wall. This was not me. This went on for about a week. Three days after the wall incident I had a grand-mal seizure, which landed me in the ER. After they released me from the hospital my friend and her mom flushed all the Ativan with me. We dubbed it a "Free the Rage" party lol. Later on, we found out that it wasn't my "body chemistry", it was my brain having a bad reaction to the drug, which I should have never been on to begin with considering my history of traumatic TBI.

How are you doing on Keppra? Is it an easy drug for you to take and stay on? It is one of the possible drugs that I will possibly be going on in the near future.

Thank you so much for you advice and input. Much luck in the new year!

Regards,
Kat

Re: Topiramate and Weight Loss

Hello Kat,

Definitely keep up with your active lifestyle...it will help with keeping your muscle mass built up (especially leash-training that 90 lb dog--yikes!) and will also help you feel better in general. I do a lot of walking, dance, and have started some upper body training (not as much fun as dancing and lower body training for me).

Well as you said, not everyone is going to react to a drug the same...sorry about your bad experience with the drug your psychiatrist gave you...I would say that you definitely had a bad reaction to it, but luckily you were taken off it. At least you, your Mom and friend were able to make some good out of it with the "Free the Rage" party afterwards...sounds like it was probably a lot of fun.

I started on Keppra as the first drug for my seizures at 1000 mg a day, and it made me kind of tired and not feel like eating anything...also made me a bit down and depressed. I didn't get the "Kepprage" that a lot of people discuss on here. The doctor upped it when I continued to have seizures to 3500 mg a day, which turned out to be a bit much for my body weight. I felt drunk, had vomiting, and was falling, tripping, and had trouble concentrating. He brought me back down to 1000 mg...then moved to North Carolina. The new neurologist doesn't think Keppra is a good drug for tonic-clonic seizures, so he is tapering me off the Keppra and is amping me up on Lamictal XR. I'm down to 500 mg of Keppra a day (one pill at night) and don't have any issues with it.

I am on the regular, generic Keppra--there is a newer extended release form called Keppra XR which I think you only have to take once a day, so it should be pretty easy to take. I have a 7-day pillbox as a reminder of when to take my pills and do my best to remember to take them on time...I don't want to have anymore tonic clonics and lose my ability to drive again!

Keppra can cause some people to have anger issues and so on--though I didn't have these issues. It can cause weight gain, though this varies from person to person. Of course, this might be a plus for you to help counteract the weight loss with the Topiramate. I do know that Keppra is a pretty popular choice for neurologists to prescribe, though Vimpat is also becoming pretty popular. Since you have a history of TBI, make sure your neurologist or doctor who is treating you for your seizures knows this when considering adding on another medicine if the Topiramate is not enough or you need an add-on to help control the seizures.

Well, hope you enjoyed your New Year's Eve and had some good quality time with friends and family!

Best wishes,

Jennifer

Re: Topiramate and Weight Loss

MinKels,

Sorry it took me a while to get back to you. The past few days have been rather mentally overwhelming and it's been hard for me to concentrate on much of anything. Add to that, that I have to go for a couple tests and a consult next week. So yeah.... its been rather fun.

I have started on the Pro-gainer as of yesterday. Not to happy about it, but if it keeps me looking healthy then it is a worthy thing for me to be doing. I also started taking a b-12 supplement to help me with my energy levels, along with the prenatal vitamin. Hopefully it will help me sustain my weight.

As for the rest of it. Neuro wants to add another med. He mentioned Keppra. However, you mentioned the rage factor of some, and that honestly is something that I would prefer to avoid. Considering my history of TBI, my brain would be nice and ripe for it after my adventures in ativan-land. At this point I think that I am safer staying with one medication, and not mucking up the works with more than that. I would honestly rather drink two shakes a day and up my current medication. But I am going to listen to what my doctor has to say and be open to suggestions and work with him to get a good solution.

New years Eve? hmmmm lots of sleep :-D Felt pretty good :-D But I did get to enjoy a nice dinner out with friends first so it was pretty nice! How was yours?

Regards,
Kat

Re: Topiramate and Weight Loss

Be very careful with Vimpat!!!  My teenage daughter has been on nearly every seizure drug and her Dr. put her on vimpat and then started reducing her topamax.  She went into a status seizure within 6 weeks of the taper beginning.  She ended up in ICU on a vent.  Dr. told us that Vimpat (all drugs) only have to get 70%.  My daughter was in the 30% that it did not help.  Weight loss is not great but if your seizures are under control try anything to stay on it

Tammie

Re: Topiramate and Weight Loss

Jt,

I am very reluctant to switch to anything. Because of my head injury, monotherapy seems to be the best method for me as far as drugs go. Anytime I have been on "combination drug therapy" for anything I have issues. Regarding the weight, I would rather stay on what I am currently on and drink the pro-gainer, which is working. The Topiramate works for my seizures, and I have had minimal side effects aside from the weight loss. While it is expensive, I would rather feel happy about myself look healthy then feel miserable and look it.

With the gainer and a few extra diet changes I have gained back two pounds. Not as much as I would like but it is a good start. My goal is to stay between 135-140. I sure hope your daughter is back on track with her health. And thank you for the warning. I will take it under advisement and do some research and make sure to ask questions if my doctor brings it up.

Regards,
Kat

Re: Topiramate and Weight Loss

Hi

I use to be on it but my Dr took me off as I to was loosing to much wieght.  I went down to 49Kg from 62Kg.

The med did not really help control my seizures either.  I think if it is helping you stick to it but talk to your Dr about a diet that will help you control your weight to a healthy weight.

Good luck and God Bless. 

 

Re: Topiramate and Weight Loss

Olga,

The drug works good for me, aside from the fact that I feel bulldozed- aka sleepy as all get out. I think that the diet needs to change more. It is slowly changing and is becoming more bulky, without being more junky. And the addition of the weight gainer shake should help. I have been on a shake one a day for a few days now, and I have not seen any difference, but the sales-guy at GNC said that it would take a little bit of time before I would notice anything. My goal is to hit a range of 140-145 and stay there.

I have to see my doc next week anyways so I am going to discuss this further with him and see what is he has to say about it.

What did he put you on after he took you off of the dopamax?

Regards,
Kat

You gained all the weight you

You gained all the weight you lost back? How quickly?  I've been on Topamax for about 4 months now and have lost approaching 50 lbs now.  I was overweight before so I'm not complaining, well I do not like all the sly comments and dirty looks I've been getting from the amount of food I've been eating (but since I basically have no appetite on this medicine I AM eating as much as I can).  

Kat, my name is Stacy. Add

Kat, my name is Stacy. Add some car s into your diet. That's why your losing you probably eat the same alot. The medication u can either change or research it. Talking to your doctor yes,. I take this med. No weight gain or lose. It helps with my headaches. My does is 300mg day.  Carbs. Add them anything white.... Starch, bread just watch your calories.. good luck

Carbs

Carbs

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