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Old 03-17-2010, 05:51 AM   #1
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Topamax & Side Effects?

Hello! I just started taking the Topamax a few days ago for my recently diagnosed epilepsy. Does anyone have any experience with this medication? My neurologist said there are some pretty heavy duty side effects including kidney stones, glaucoma and drastic weight loss. I've always said I wanted to lose weight without diet or exercise, lol. If I could lose 20 or 30lbs that would be awesome. Anyone have experience with weight loss and/or kidney stones? I've never had a kidney stone, but I hear they're pretty painful. Right now I'm on 25mg.. building up to 100mg and then will continue to increase from there to find my right dosage. Thanks

 
Old 03-17-2010, 10:48 AM   #2
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Re: Topamax & Side Effects?

I was on it since 2001. I just came off it the beginning of this year and my Lyrica was increased and I was placed on Trileptal prior to the decrease.

In September of last year I had a kidney stone. It is something I never want to have again!! I ended up being driven to the hospital by a nurse to avoid the costs of transportation. I then saw my GP and was placed on the emergency slot to see my Neurologist within TWO DAYS. He then lowered my from 500mg/day to 400 of Topamax.

During the weekend I found the best doctor at the medical facility I go to. On Tuesday I had an appointment with the top doctor of the Urology Dept for kidney stones. I had obtained a sample jar from my GP, and screened the fluid discharge for about a week until the stones came out so they could check them for what type.

Two weeks later I was back at the clinic and brought in the stones I had caught. They then had me see a dietitian and based on the results of the lab work I was recommended to watch my SODIUM intake (salt) and what vegetables and fruits to avoid.

I then threw out the fridge contents and started to watch labels on what I bought. They had recomended, based on having a high pH discharge, to mix lemon or lime in water, and have about 1/4 cup or more PER DAY of those juices. I put in about a tablespoon and a half of the juice in waters and drink water in excess every day. I consume about 6-8 bottles of the mix PER DAY.

For the most part, Topa was fine, until I reached 300mg/day. It then eliminated my apatite from that point on. I had to force myself to eat. The sensation that you are hungry was suppressed by the medication.

When I was initially ramping up on Topa (25mg/week) I had seizure LIKE episodes where I would lose track of what I was thinking. I could not find my train of thought for a brief period (2-5 minutes). Once I was composing an email and I blanked out! The other was durign a phone call and I could not speak. Well, not really. I was able to get out I'll call you back and hang up. In 5 minutes I was back to 100% and called back the person.

Not trying to make you scared of the med. It made me mostly seizure free. I'd have one about every 3-4 months. Hope this isn't a overload for you!

--Travis

 
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Old 03-18-2010, 02:05 PM   #3
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Re: Topamax & Side Effects?

Travis,
No overload at all. I appreciate the detailed response! I am an avid water drinker and rarely drink anything else. But, I don't usually add lemon juice to it. I will make sure to pick up lemons the next time I go to the store. Now, you say 1/4c per day. Is that only what is going in to your water or are you drinking fresh lemonade as well? I'm also curious how much daily sodium is too much for you.
As for seizures I still experienced a seizure last night (still on 25mg) and hoping that I won't need a crazy high dose and suffer any adverse effects, but also wishing to be seizure-free or as near to seizure-free as I can get. Thanks so much for your help.

Katie

 
Old 03-18-2010, 06:17 PM   #4
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Re: Topamax & Side Effects?

You don't NEED to mix lemon juice/lime juice with water if you are on Topa.

I did this AFTER having a kidney stone, and finding out I had a high pH in my urine. So I started it afterwards to help in lowering my bodies pH.

I use the juice EXTRACT, the type people use for cooking. 8, 15 or 32 oz bottles. If you use the fruit, you would have to consume a good percentage of citrus fruit to get the same amount as in 1 tablespoon of juice.

I mix the juices in with the 1/2 liter's of water. If you take a sip of the water when you open it, you will then have enough room to mix in the juice.

Personally I say TRY 1 TBSP first. If you can tolerate that, stay with it. If you can take having more in (like 1 1/2) try to take what you can handle the taste of for the most amount.

I go through about a case and a half of water per week, sometimes more. However I HAD the medical staff recommend to me to do this. Just keeping fluids UP (just water) will work as a preventative measure to try and avoid kidney stones when on Topamax.

You have to factor in that I was then taken off of Topamax due to the kidney stone incident. However I keep this up due to my bodies chemistry, as was suggested by the urologist. Keeping your body hydrated with water alone may help AVOID stones.

--Travis

 
Old 03-30-2010, 04:30 PM   #5
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Re: Topamax & Side Effects?

Hiya, i've just registered on here because i read your question and thought I would tell you my experience, so i'm new and hope this message works!... Anyway I dont want to be too negative 'cos everyone is different, but I certainly hope it works better for you than it did me.
I have finally this week come off topamax, and I am so happy to be off it!
I suffered quite bad side effects from it, initially the pins and needles were painful ( rather than just annoying they lasted longer than any I had experienced before this medication), but I thought if that was the only side effect I would manage fine.
However the worst thing about the meds was how it effected my brain, and my concentration, something that should have taken me only a minute to read would take me 10 times that long, I just felt thick!! I have to do a lot of mental arithmetic in my job and was always quick at this, however I struggled even with simple things... my brain didn't feel like mine.
I was on 600 mg daily, along with 600 mg loperamide daily and clobazam when I was struggling and was still having regular seizures.
Unfortunately I didn't get the weight loss.. typical!! They have now started me on sodium valporate, which runs the risk of weight gain.... whats the betting...!!! lol!
On a positive note I didn't get any kidney stones or problems with my eyes.
Sorry, I dont think I managed not to be too negative about it... but I know that plenty of people do have success on it, so I hope you are one of those people!
La

 
Old 03-31-2010, 11:39 AM   #6
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Re: Topamax & Side Effects?

Quote:
Originally Posted by la rad View Post
Unfortunately I didn't get the weight loss.. typical!! They have now started me on sodium valporate, which runs the risk of weight gain.... whats the betting...!!! lol!
On a positive note I didn't get any kidney stones or problems with my eyes.
La
I had the weight gain on Depakote. More than 20 pounds. Oddly enough, it came OFF when I was taken off of Depakote. Just not where I needed it to. My suit no longer fit when I had to attend a formal event.

I also know of a case (a friend) where the weight LOSS occurred as a result of the medication. In most cases patients have the weight gain; however, if you are like the person I know, (rare side effects of Depa) you may have loss of weight.

I only had the "brain fog" from Topa when I was ramping up (the weekly 25mg increases). After that I had a few rare episodes of the symptom, but nowhere as bad as during the initial stage of reaching my destination dose.

--Travis

Last edited by Travis from MN; 03-31-2010 at 11:40 AM. Reason: bad edit

 
Old 04-09-2010, 07:03 AM   #7
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Re: Topamax & Side Effects?

I haven't noticed any side effect other than TERRIBLE pins and needles in my feet at night. UGH! I get up 4,5,6 times a night and walk around. I'm trying to figure out ways of sleeping that will make it a little easier to sleep at night. I have been drinking my water but can't stand the lemon juice in a bottle blech

 
Old 04-13-2010, 01:07 AM   #8
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Re: Topamax & Side Effects?

Hi Kate,

I've been taking Topamax 100 mg 1 x a day for Migranes and Epilepsy with 800 mg of Tegretol 400xr 1X a day and haven't had ANY seizures in over 8 years. and I used to have Grand mal and Petite Mal seizures in college and when I was younger around my period. I used to weigh over 200lbs and now weigh about 155, all because of taking Topamax, and I've had hardly ANY migranes at all. The only annoying side effect from this drug is short term memory loss, but its a side effect of any seizure med. Also if you are married or dating someone seriously Topamax will affect your birthcontrol if you're on the pill, basically meaning it will stop working, but Tegretol does the same thing so you may need a 'back up controceptive'.
I've been on Topamax for three years, and Tegretol for 17 years, at varing dosages, but since I've been on Topamax my neurologist has been decreasing my meds for the first time in over 17 years. Right now I can legally drive, and live a normal life.

I've taken Lamactol in the past and it gave me migranes, and Dilantin another seizure med I'm allergic to.

If you are planning on becomming pregnant Topamax and Tegretol and many other seizure meds do have some negative side effects on a pregnancy, but can be managed with your neurologist. I also take Asthma meds and they do not interfere with my seizure meds.

I'm looking for a weight loss supplement to loose the last 20 lbs, do you know of any that don't interfere w/ seizure meds?

 
Old 04-13-2010, 01:10 AM   #9
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Re: Topamax & Side Effects?

I had them at first in one leg, so prop your leg up w/ a pillow, may be kind of annoying at first, but eventually goes away

 
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