I'm new to this board but as so glad I found it!!!
I was wondering if anyone could help with with 2 questions:
1. Is/has anyone (been) on topamax and found that it caused insomnia??
2. what are people's experienced with discontinuing topamax?? specifically, do you RE-GAIN the weight lost, or do you maintain the weight you stopped at???
Hi Hollie Anne,
My daughter has been on topamax for 4 weeks now. There are lots of side effects..
There is several websites on topamax you might want to search for. Sorry, can't list them here. My daughter was staying up late before she went on the medication, so I can't say that insomnia is one of her side effects. She has fatigue, nausia, tingling, sensitive hearing......everything tastes funny that she eats and the weight loss. She is taking the topamax for migraines. Having the side effects is better than the headaches. Hopefully after a time the side effects will lessen.
I have read that you need to contact your Dr. if your going to go off Topamax. You are suppose to taper down just like you tapered up to reach your maximum dose.
Hi, I was on Topamax for about six months. I didn't notice any insomnia, but the weight loss became a big issue because I got under 100 pounds.
When I stopped taking it I did regain the weight eventually.
Hi Holli-Anne,
I don't think the weight loss with Topomax is a metabolic thing. I know my daughter has lost weight with the Topomax but its because the medicine has changed how everything tastes. Since food and soda tastes strange she just doesn't eat like she use to. She eats the healthy food, and drinks water.
I don't know if this is true for everybody else on the topomax......I did find other boards on topomax alone......you'll have to surf the net........
I've been on Topamax for quite sometime now!!! I'm up to... 300mg (had to count in my head how many pills I take ) I have lost forty pounds so far, and most the time I really only want to eat around lunch time. My hubby gets pretty mad at me, but if I eat I feel so sick.
May I ask the reason why you are thinking of not taking Topamax? Its been my wonder drug!!! I have only started having major problems with it since I hit the higher dose!!!
Any questions please feel free to ask, I'll try to check in... been away from this board way to long!!!
Take care!!!
Lisa T
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Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
Hi Lisa T,
How many pills is 300mg? What kind of problems did you run into with a higher dose?
My daughter was taking 2 day and tapered up to 3............After 3 a day she got really sick to her stomach and felt nauseated all day. She dropped the 3rd pill and went back to 2. She is thinking about adding the 3rd pill again. She is on Topamax for continual migraines. She still doesn't feel so good, but she doesn't get headaches as often as she was.
Hi Hollie Anne, what are you using topomax for? Thats interesting that it causes insomnia for you. The neuro told us that it causes tiredness so my daughter takes it at night. Shes fatigued all the time from what ever is causing the migraines.
Holli-Anne... I have to admit it really surprises me that Topamax keeps you up, but my neuro says it effects everyone differently. And since we are taking it for different reasons maybe that could play into it also. Topamax completely wipes me out. I could sleep day and night and never eat a bite of food or drink a drop of liquid until my lips are plastered together! But I force both upon myself... What dosage are you on? Has it always affected you this way? Or did you just begin it?
hannasnana... well I take five pills in the morning and seven in the evening... each is only 25 mg... its cheaper for me insurance wise to stay on 25s until we figure out the right dosage!! Its funny to me that people take Topamax for migranes, because I have to take Magenisium Oxide because Topamax causes such severe headaches in me!!! Go figure!! You said your daughter is fatigued all the time, is that since she started Topamax? I get very tired after about the fourth hour of taking my T. You also mentioned her getting very sick, I went thru that too. It took me three days, but I did bypass that phase. Please check and see what dosage she is on!!??? Is she getting in the higher dosage? Each uppage for me is harder now.
Anymore questions ask away, I'll try to check back!!!
Lisa T
__________________
Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
daughter is on 15 mg twice a day. She is going to try the 3rd pill again with the help of meds for nausia. She was fatigued before the Topamax........How strange you get headaches with Topamax. I'd like to try the magnesium with her too.
Does the topamax just make you lose your appatite? or does food taste different to you? Funny how topamax affects everyone differently.
Holli-Anne... Yes dropping the weight is not hurting me yet. I'm 5'9 1/2 and started out weighing 210, I'm now at 170. I started dropping the weight once I reached the 200mg mark. It was very slow at first, but now that I'm upping every three weeks, the weight is really dropping. I'm struggling with the higher dosages though. I get colds very easily now and nausated all the time. I literally must force myself to drink water, because I don't even want that, but Topamax really has helped my seizure control. Once I get my sleep pattern back under control and stress back to a minimum I know I will see more results!!! Oh Yeah..... I started T back in September of 2003 and was raised Very slowly.
Hey Barb... I have never noticed food tasting different for me, just the caffinated drinks. And I can actually drink them now. They don't taste bad anymore, not quite the same, but not bad!!!! Got to quinch that craving once in awhile, you know??!! Topamax completely wipes out my appetite. I usually have (maybe) one time of the day when I get hungry and thats it. How does your daughter do? How old is your daughter??
Take to you both!!
Lisa T
__________________
Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
Hi Lisa, My daughter will be 17 in January of 2005. My daughter eats like a mouse now......I think she might eat 1 or 2 meals a day. She is eating much healthier. Everything tastes funny except the SUGAR stuff......LOL.........darn........
Even though she feels yucky most of the time.......she is better than when she was having migraines everyday. Another thing thats happened since the migraines, (not sure if its the topamax) is sensitivity to sound. If any sound is above normal she gets sharp pains in her ears.......then she gets a severe headache.
Thanks for posting!!!
Barb
Hi Lisa T, are U still around?
You mentioned that your Dr. has continually increased your dose of topamax? I know you don't use it for migraines.....When my daughter first started using the topamax it worked pretty good. The migraines and headaches became less and less.......seems like lately the headaches are coming back along with the migraines....Is that why they increase the dosage?
Hi Barb... Yes I'm still around, just haven't been able to check in here, sorry!! Hope you had a nice Christmas!
My neuro keeps increases my dose because I don't have total control of my seizures. I also went back to work which incresed my stress ( which increased my seizures.... I see a evil little cycle there!!) So my Topy gets raised until my seizing stops or until the side effects are untolerable, which ever comes first. Unless he decides to add a new pill in to my life. I have a appointment tomorrow actually, and I'm thinking I'm going to tell him I'm not going any higher. Seems the longer I'm on this dose the more I'm noticing. I'm just not sure I can handle anymore. I have a sore throat contunal and my sinisus are always acting up. I have started stuttering some (a rare side effect) and answering questioning is becoming harder.
Listen to me whine, I really like Topamax... it has helped me SO much!!! But now ????????? Maybe if I back down some and live with the seizures and fewer side effects I'd be happier!!??
Hope I answered your questioned, inbetween my whining sorry about that, just trying to figure out what I want to say to the doctor!
Lisa T
__________________
Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
I have been on Topomax along with Depakote for about 14 months now. I do have side effects such as the headaches, I lost about half of my hair, word finding problems, urinary tract trouble, and the list goes on, but I have been seizure free for 13 months! I take magnesium oxide, zinc, selenium, cranberry, and a multi-vitamin with extra calcium to help with my side effects. The vitamins have helped. I haven't had any more urinary tract infections, I am regrowing hair and my scalp isn't so sore. I have been able to drive again and regain my freedom. I had been thinking about going off my meds because of side effects, but which is worse, seizures, or the side effects? I was having 2-3 grand mals a month, no fun.
Kathy
Hi Lisa,
We had a nice Christmas, hope you did too....Its always so busy around the holidays...
I NEVER thought of your input as WHINNING... There are times when these illnesses people live with are hard to deal with, this is a good place where you can let all your feelings hang out...... and not be judged.
Liz, my daughter, is on a low dose of topamax and her side effects are limited right now. 6 months from the time she began the topamax she goes back to the Dr. for re-evaluation.
Re: Topamax Questions 
) I have lost forty pounds so far, and most the time I really only want to eat around lunch time. My hubby gets pretty mad at me, but if I eat I feel so sick.
Its funny to me that people take Topamax for migranes, because I have to take Magenisium Oxide because Topamax causes such severe headaches in me!!! 
Re: Topamax Questions 
