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UPDATED: Fri, 09/15/2006 - 5:59pm
alexia...
topamax and weight loss
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Has anyone or have someone that experienced that Topamax side effects include weight loss. If so, is there anything being done to gain weight. My Alexia, 16 is underweight and is being teased at school. She weighs 93 pounds (called aneorxia) and I am reassuring her that she is just fine and it is one of the side effects.
karen
By alexia... at Fri, 09/15/2006 - 5:59pm | 18721 views | 45 comments
Recent Comments on this Discussion
It depends on how tall she is. If she is 5' tall, 93 pounds is okay. If she is 5'6" tall, 93 pounds is NOT okay.
Also, teasing can be flirting and in high school the boys don't understand the difference (teasing is making a statement and laughing, while a compliment is making a statement and saying that you like it or it's good), as they're just learning. Anyway, the standard these days is for high schoolers is to be anorexically thin because their generation is really aware of how obesity can make a person physically ill. What you need to worry about is whether she's too skinny and that it's not good for her bone buildup for later in life.
I took Topamax and at one point I had to have the sphincter at the top of my stomach loosened up. They knocked me out and looked for tumors while they had the camera down there (nothing) and I felt great afterward.
I quit the Topomax after a couple of months because my hands and feet were so numb they were painful. They put me on Tegretol XR, and I haven't had a seizure since. So Topomax and Tegretol XR are both good for seizures. I can also think a little more clearly on the Tegretol.
Boys in High School are old understand the difference between teasing and flirting.
I've too often heard the word "teasing" used when the reality is that harassment or emotional and verbal abuse is far closer to the truth.
Kids in school are put in a terrible position because they are often powerless to stop it. An adult would get up and walk away from someone harassing them, or even call the police. Kids however, can't do this and parents and teachers make it worse my dismissing harassment as 'flirting' and shaming and dismissing the victim.
If your daughter is being harassed at school, then please take her seriously.
High Calorie Shake for Topomax Weight Loss
I know it's been awhile since you posted this thing about weight loss and Topomax, but I do have experience with this. My 17 y.o. daughter, who is 5'6" went down to 104 pounds last winter and ended up in the hospital. She was very weak and emaciated. The one thing we tried that worked was a shake recipe used for chemo patients that my dr. gave me. Here it is:
6 scoops organic ice cream
full pkg of Carnation Instant Breakfast
1/4 to 1/2 cup "Egg Beater" type liquid
2 TBSP Whey Powder (I use the NOW brand)
2 cups organic whole milk
1/2 cup organic whole milk yogart
vitamin powder (I use "All ONE" available at Vitamin Powder)
I make this in the morning. It makes a quart and I serve her 8 oz. at a time throughout the day. If there are allergies or sugar issues you can substitute alternate ingredients.
She is now up to 116-118 pounds. I try to help her choose healthy calorie-dense foods that are chemical free.
Hi,
The 1st 6 mths on Topomax were rough for me. I could hardly eat anything. Then I started talking to a couple of people & clued in to a few ideas. It's a bit of a lifestyle change but it worked for me. Smaller meals throughout the day. I'd eat 5-6 little snacks (crackers, cheese, apples, grapes, a muffin, etc.) as I felt like it. Gradually those became bigger.
Then in between - gatorate.
That's how I got through it.
Hi alexia, if the med helps your seizure control, forget what others say..try small snacks with protein in between meals and before bed.
this may sound gross, but those nutritional drinks like ensure really helped me gain a few back.. good luck
i have a daughter your age and size, i tell her to ignore the ignorant and focus on school and you..
Sealion 50111
After reading these posts I can only say it takes time and it depends on age as well ...it also depends on male and female. I (male) have been taking Topamax 14 years. It does have side effects.
It sure beats GM/TC seizures though. You see I just look at it as the best solution. Sure I still have the " shake and bakes " I expect I always will. But I can stay out of the hospital with this med. That is most important to me.
Normal day let me know the treasure you are. Let me not pass you by in quest of some rare perfect tomorrow. One day I shall dig my nails into the earth or bury my face in my pillow or raise my hands to the sky & want more than all the world your return
I take Topamax. Have been on it for going on 8 months now. I am 5'10" and when I started it I weighed 162 and now I weigh 133.
Its quite frustrating. I get the opposite of being teased I get you look amazing! Are you trying to lose weight you look so skinny! How are you doing it? I even had a girl at work find out what drug I was on go and tell her doctor she had migraines so she could get it so she could try to lose some weight.
Then after a week of her being on it she came up to me and said why haven't I lost any weight yet Michelle? I was so annoyed. Some people have to be on this stuff and dont want to lose the wieght it causes!
My clothes don't fit (I have dropped 2 bra sizes) I went and bought new jeans a few months ago and now there too big.
I have a appointment with My neurologist in a couple weeks. He will probably put me on Dilantin so I can have kids. Then my weight will sky rocket through the roof. Then when I'm done having kids back to tegretol and topamax and weight plumits again.
Its a hard life. But we are all not alone. Their are others going through the same things. Maybe sharing that piece of information will add some comfort?
As far as what I do on Topmamax. I force myself to eat 3 meals a day even when i'm not hungry. Have all the extras around for snacking: ice cream, cookies, bacon, sausage. Anything fatty or that can add some weight. I order pizza ALOT.
With Topamax you can get away with it.
I was put on topamax, I had the effects of weight loss....they said it was medicated induced anorexia, had problems with diet pills etc when I was younger. My specialist prescribed these for me, I did'nt eat for almost 7 weeks, everyone around me said I was starving myself which I was'nt doing, my favourite food is chinese takeaway!! Could'nt even eat that, then my dad took me to see my specialist, told him what had been happening & straight away he knew it was the tablets that were the problem, NOT me which was a huge relief. Ho took me off them straight away & I was able to eat again, my 1st meal......CHINESE LOL!!!
I went onto Topamax in December and have lost over 14lbs and am now constantly getting asked if I'm eating properly. Which is becoming a bit boring. I do really feel for any of you who are being teased, its not fair, but people just can;t understand. I make myself little and often, and eat more than I ever did to or having troubles with the weight issue. I try and eat little and often to maintain my weight because the med has reduced the seizures. Epilim had the opposite affect when I was on that about 10 years ago I was about 28 pounds heavier! Keep smiling.
Hi,
I find that gaining weight came too easily with Epival...
Kids are so cruel. My son was always thin but started having absence seizures and began taking Depakote he gained 50# in 2 1/2 months. Tell your daughter to go to GNC and buy this stuff called weight gain. I have used it. It tastes horrible but did help. God bless you all
Kim
Hi,
I'm on Depakote right now and one of the major side effects is weight gain. I am on a very strict diet and exercise program right now just to lose what i have gained. They also considered putting me on Topomax, so I would guess that your daughter has generalized seizures.
I dunno if there's anything to help her gain weight. But, at least she's not gaining too much weight. One of the meds I take made and still makes me gain a lot of weight. And because of it, I was teased as well. Maybe you could ask the neuro if she could change her medications. I'm unable to change mine because if I do change my medications, I'll get more seizure than I do now. It's quite okay actually. Most teens now of days rather be thin than fat. And trust me, fatter teens get teased more in school than thin people do. And she also could lie about her weight if people ask. It could maybe stop some teasing though not all.
~Sophs
vickie l.roy
I wish I could lose all the wieght that you people your talking about. I have been taking topamax for about 10yrs. I lose a little and gain a little. I never completely lose it at all.
I have always been over weight.
90% of seizure meds retain fluids.I take 3 medications. Lucky me I always get blessed with those that do.
vickie Roy
Berlin,NH
I started Topamax and immediately lost weight, but I would advise against Keppra because when they added that my weight dropped even more quickly because that suppresses the appetite. Just thought I would throw that in! Good luck. Kai-di
Hi I am new to this...My name is Alyssa and my son Damien has Epilepsy....My son is 3 and has been on Topamax since Sept. He has lost about 3 pounds in that time frame. His Epileptologyst said that she would not recommend an appetite stimulant unless he fell below the 25th percentile on the growth chart. He was taking 50mg in the am and 50 mg pm, but today he was increased up to 75mg in the pm. He has been having seizure activity. He has not had a seizure since September and all of the sudden he has had about 8 in 5 days. I found it up until recently to work very well to control him. He was very violent on the Keppra that he was on previously, he was always tired with the duo of the two (keppra and Topamax). I dont know. My son also has a cyst on his right temporal lobe. I wish that they would investigate that. I feel that if that cyst were drained he would have less or no seizures. When I mentioned that to my OLD Neurologist he told me that "he is not in practice to crack open the heads of 2 year olds anytime there uneducated mother feels necessary". I just simply asked if it needed to be removed, not that I wanted to see my than 2 year old have any unneeded surgery! Needless to say that we found a new neuro, he then had us see the epileptologist. She has been great thus far but wants to try one or two more med changes and if those are unsuccessful than they will further investigate the cyst. Anyone in my situation??
~*Alyssa*~
GOOD GRIEF! Do NOT have surgery on this poor kid. You have NO idea how painful it is having someone cut into your skull, and because bone grows so slowly and never completely grows back the way it was, it continues to hurt as though it were just sawed into. I have days when I'm definitely insane, throwing up and hitting my head just to distract my nerves from the crushing/splitting/exploding pain in my swollen meninges and bones from the seizure surgery, and that was 17 years ago. Do NOT have surgery on this kid until every other avenue has been tried!!
I took Topomax and because of the side effects, switched to Tegretol XR and have had perfect seizure control with very little side effects. Because it is longlasting, I don't have breakthrough seizures like I did with Dilantin, Phenobarbitol, and Neurontin.
I would NOT recommend Depakote; I had constant abdominal pain, diarrhea, cramping, heartburn beyond belief, and thought about nothing but EATING and EATING more 24/7. I gained 125 pounds. More importantly, even when I got up to 2000 mg a day on the stuff, it DID NOT CONTROL MY SEIZURES.
Tegretol XR is great stuff; at least for me. I am only taking 600 mg a day compared to the 2000 mg of Depakote and I have absolute control--no seizures for 7 years now.
Listen to the doctor and epileptologist. As a child grows, a cyst will change as well, likely disappearing. In the meantime, keep a record of what he eats before his seizures, in addition to how much sleep he gets, anything that was a little unusual in the few hours before his seizure. You may find (as I have) that food allergies have a lot to do with it.
Hi, my name is Alaine and I have never made a comment on computer before. My son, Rylee is 27 months old and was diagnosed at 12 mos. My son is now on his 3rd trial of meds with little to no sucess. Ry is currently taking topomax (new med) and trileptal (being phased out). No notice of weight loss as of yet. Ry is close to 50lbs. Ry has a cyst on the left side, temporal lobe, outside. He also has a smaller left temporal lobe. My Neuro. has advised me that neither of these two things mean anything, are not harmful and are not cause of son's epilepsy. We have no family history of epilepsy and no known cause. Ry has absence, complex anad simple partial along with gereralized seizures. Ry has recently been ill with temperature and had 5 generalized seizures in 14 hours. I am having a terrible time watching my son go through this, feeling helpless and not sure my doctor is doing everything that can be done. Help?!
Alaine
sounds like the nasty old mean doctor needs his head cracked a little bit. : )
Kim
I gained weight and lots of it. Then I learned after coming off of that I hardly ever slept - what little I did sleep was fretful, the slightest little noise would wake me up and then i couldn't get back to sleep. I was mad all the time, and earned a really bad reputation at work for being, well, you know. Anyway, the first day i came off of the topamax i was just incredulous. i couldn't believe how badly it had made me feel, and how good it felt to get off that demon drug.
Karen
I have learned that if I don't drink the water I am hungry. But the water is to stop you from passing Kidney stones. So be very careful. I would not mess with it lightly. I hear passing one is not a forgetfull event. I am on it myself. I don't like it either. Good luck girlfriend. Teresain
It definitely is a side-effect. My epileptic, 4-year old daughter tried Topamax for seizure control last year. We didn't last six months before switching back to her Keppra/Depakote cocktail.
Make sure her doctors know she is experiencing this side-effect. They may deem it an unacceptable med for her if her weight drops too low.
kem83651 I was on Depakote when I was younger and I asked to be switched to a different med. I foud that depakote can cause serility in females. I fear for young girls that are taking this drug, it is also used for manicdepressives. I was on a 1000mg a day and now I am on topamax at 100mg a day.
I lost 60 pounds in 3 months on topamax when I first started taking it. I then stopped taking it because of the rapid weight loss ( being a nurse I knew that was not good for my body as most of it was musle mass). My neurologist put me back on it but at a lower dose and with klonopin after I gained 20 pounds back. At the lower dose and with the klonopin I seem to have been able to remain seizure free and still control my weight. I feel better now and have less side effects from the topamax (except for the restless leg syndrome).
Alexia, I take Topamax as well but I only notice that It helps me keep my normal weight balanced, it won't go higher or lower that easly. if I gain weight I will loss it right away if I exercise 2 or 3 time a week for 30 min.The only problem is that if I don't take Topamax I get frequent migranes.
Seizuregurl70
I have been on Topomax for 8 months now and lost 70 lbs. I didnt mind the weight loss due to fact The other meds left me with no energy so i sat around and ate and gained weight. Topomax was a dream! no migraines, no seizures, weight loss bring it on. Then after 4 months, i had a massive seizure. I used to have them only in my sleep this one happened while wide awake, next thing I know Im in a hospital. My hair started falling out in clumps, I started brusing, not healing properly (takes a very long time to heal from anything little thing). I feel sick all the time so I am losing more weight. They then up'ed my Topomax dosage to 500mg per day total. 8 months into taking Topomax my hair is so thin i dyed it black to dye my scalp so you cant notice it as much and i had a cluster attack of seizures last month so bad that i had to be incubated for 3 days because i couldnt breathe well on my own. I am not saying Topomax had anything to do with it but it hasnt done well by me! They have been weening me off Topomax and on Keppra 1000mg twice a day. Keppra seems to be ok except for the insomnia which has defintely gotten worse and i have a constant ringing in my left ear. Who knows everyone is different. They also started me taking Vitamin D 400IU Three times a day. i read that it can help seizures and is for the nervous system.
Good luck to everyone in this ride through medical hell. Mine just started 2 years ago at age 35 no history in the family nothing!
again be well ;)
I experienced the same thing when I was on Topamax. I was also 16 but I had gained so much weight from Depakote that the weight that i lost wasn't that noticable. That is until I dropped down to a dangerous 140 pounds. I was teased at school as well but didn't know about it. I weighed 210 pounds at the end of the school yr. and started taking Topamax over the summer. At the start of school I had lost 40 pounds. People called me anorexic but they did it behind my back. I ate and ate all I could but nothing really made me gain weight. Basketball probably didn't help either. I did drink a lot of Gatorade and other sports drinks. That's where I lost the other 30 pounds and my parents and dr said that I should be taken off Topamax because at my height(5'11") and weight(140), it was very dangerous.
My 6 yo daughter has been on Topamax since October and weight loss has been a huge problem for her. She was thin to begin with - 40 pounds - but dropped to 34 pounds. Her appetite is just non-existant. You know a kid's not hungry when she doesn't want ice cream! We have been using Pediasure and Instant Breakfast to supplement her meals - I give her 8 oz at breakfast and dinner and she's gained a couple of pounds back, but we really have to force her to eat at times.
I switched from Topomax to Tegretol XR and they both are great at controlling my grand mals, but without as many side effects. Ask your doctor if she might switch.
Dear Stephanie:
Thanks for the reply regarding your six y.o. situation with Topamax. My new mother-in-law (former CNA) suggested that I put Alexia on multi-vitamins to increase her appetite. I am not real big on vitamins, but I tried it. Bought generic brand and she eats like a pig now but hasn't gained any. May be trying your daugther on a chewable vitamin my help her. It wouldn't hurt to try. Alexia did do the instant drinks for a while then got tired of them. I completely understand her situation. However, we do have quacks for doctors that seems to think her underweight may be "depression."
I wish you luck.... keep me posted. karen (alexia mom)
maybe Depakote?
Topamax seems like a strong drug for a child, i know when i went on it when i was 13 or 14 it was too strong for me and i couldn't focus and i did lose too much weight.. ALso Depakote does make you gain weight, and its a more health drug for a child in my personal oppinion...
Good Luck
~ LOula
Hi...
I experienced the weight loss with the topamax,,, 75 lbs in the first 9 months,,, for me that was great,,i could really use it... after the first year it leveled off to the point where i now have to watch what i eat... gained 20 back..sigh... so much for eating unlimited quanties of chocolate...
Like Godiva Girl i still drink loads of gaterade,, i believe she is the one who got me hooked on that in the first place...grin..
But as i said it does seem to level itself off at least it did for me..
Heather
I just went on topamax for the second time and the first time i lost alot of weight like 30 or 40 pounds w/ in like 3 1/2 months...
Now i'm on it for the second time, its been like four months and i only lost like 23 pounds....wish the weight would come off faster but what could i do... Seems like this time i'm more leveled out on it, more of a appetite than last time.
What dsgage are you on???
My neuro just took me down from 300mg to 200 mg so he could introduce a third med...sigh... think he is bored...grin
but with the topamax i think that the trick with it was ..(looking back of course..grin) that while you are losing the weight and have little appitate.. to change your eating habits...
I never did that...rofl.. just took it as a sign to be able to eat more chocolate....lmao
Hi There:
I am 32, but went on Topomax at age 27. Now, I've added in Keppra (hoping to go off Topomax in the new year)
Weight loss is WAY more common than weight gain with Topomax. At my age/height/weight I was glad to loose a bit, but it got frustrating feeling sick all the time. Here's what I did.
I drank a TONN (and I mean LOTS..) of Gatorade. It gave me energy, and it put some elecrolytes back in my system. Avoided dehydration as well.
Gradually, I worked up from Gatorade to Gatorade+Campbell's chunky soups. Those were okay, and still not too much.
Then meals were the gatorade, soup, crackers & a muffin.
It takes time, but after a good 6-8 months I adjusted.
Are you from Ontario at all? Dunno how popular this place is, but I'd also suggest stopping by Booster Juice - expensive but their energy boost drinks, some of the cookies and power bars might be good. I actually still get a lot of stuff from Booster Juice after I hit the gym to loose weight I'm putting on being on Keppra.
Also, pick up a blender (if ya don't have one) and a book on smoothies and fruit juices - you can make some great all natural juices that won't make your daughter feel sick & she'll get some calories out of those. I did that during the summer while on Topomax the 1st year. Dunno where you're from, but it's getting a little cold for that in Ontario.
Hope this helps.
Erin
I'm 37 year's old and I've been on 100mg of Topamax for my migraines. It's been about 4 months now and I haven't lost an ounce. I'm overweight and I was hoping that I would lose some weight but, I guess my Topamax dosage isn't high enough or something else is wrong with me.
i have just started on the tablets 50 mg twice a day and have been eating like crazy!!! Any suggestions??? I am 5'3" 130lbs and do not want to gain any more!
when i first started taking topamax I too lost a ton, about 35 pounds. i was only 145 to begin with. it really sucked i had to get new things to ware all the time because nothing ever fit, and when you are in college and on meds you cant go shopping all the time. People kept asking if i was eating or if it was because my boyfriend and i had split up. but i was eating like a horse to try and put on some pounds. but Now i can say after 5 years of being on it i have put about 15 pounds back on and its not hard to stay at this wait. from what i hear thats normal.
so maybe if she can stand it and its what works for her stick with it. that is unless its unless she gets so thin that you know it going to hurt her body.
I have JME and migranes. My doctors changed my medication from phenobarbitol, which I took for 30 years to Topamax to prevent or help with the severity of the pain of migraines. It has been horrible transitioning from the old meds with the emotions association with the withdrawal process. When I started taking Topamax I lost 10 pounds, had a slight loss of appetite, but I have gained back 5 pounds and am completely normal with my eating habits and appetite. I found that the Topamax has made me forgetful and a slight personality change. Is the medication working for your migraines? Are you taking Topamax for weightloss as well? I have had to increase my dosage from 100mg to 125mg and the increase has not effected me the way it did when I started taking the medication intitally. I am telling you this because I would hate to see you put extra dosages of drugs in your body that you don't need for migraine control to lose weight that you might not lose. There are withdrawal processes with these drugs that need to be considered.
A friend of my mother's had a daughter who took Topamax and actually suffered the exact opposite side effect; weight gain. She also had some hair loss. I guess side effects really depend on the individual. That girl later ended up taking the same medication that a doctor gave to me (Keppra) and she was fine after that.
I don't know what type of epilepsy your daughter has, but I'd ask your doctor about Keppra and whether it could work for her. The side effects, at least for me, have been non-existent. Though I'm not sure whether that could help the weight loss. I'd look into the weight loss issue a bit further, but that's just my opinion.
I know what it is like to be teased at school, so I hope your daughter can get through it.
I was just taken of of Topamax because of the horrible side-effects. I had gained 13 lbs, my hands and legs shake uncontrolably, and I have had a lot of hair loss as well. The doc. said my weight gain was due to another med. I take but the other side effects are from the topamax. I just went off of Topamax about a week ago and I am having horrible headaches. Has anyone else suffered from these side effects?
Hi
i took depakote and it actually made me gain alot alot of weight....
Then i took Topamax and it made me lose the weight i gained from Depakote.
So if your trying to gain weight i advice taking depakote it'll do wanders for that lol...
ive got the opposite effect to topamax coz ive been on its for 6 years now i think n ive put on prob 10kg since having ep ive tried so many diets but nothing work.... the doctor thinks its really weird so he tried me on epilem but that didnt work so i went back on topamax.....i would love to have it where it makes me lose the weight n i can eat what eva that would be great