why do folks hate being on topamax

Of course everyone is different, but for me, some of the side effects took some getting used to.  Loss of apetite isn't so bad-unless you don't need to lose weight.  I lost 12 pounds in 6 weeks before my husband finally got where he was making me eat some protein bars and the like.  I have some numbness and tingling in the hands and feet and at first there was some confusion.  Just little things like forgetting where I put things and losing count when I was exercising-but that passed.  I've heard that some people also have bowel problems as well, luckily, I've not had that.  But on the plus side, my head aches are not as frequent or as severe since being on the topamax.  Good luck to your 17 year old on the medication.

Well I don't want to scare you in to not trying it out, but I do want to explain to you why I personally did not have a good experience. I can't speak for everyone because each medication affects individuals differently.

 

I became extremely anxious and depressed. I began having panic attacks and had a general feeling of losing myself/going crazy. I had a hard time concentrating on work or school, which gave me even worse anxiety. My communication/speech became impaired. I could not find words at times, or when I tried to say something I studdered...often sounded dyslexic. On top of all of these negative side effects, I never got any relief from topamax. I never noticed any change in the frequency or severity of my migraines.

 

But I think when you start trying out different preventatives you can't discriminate. You have no idea how your 17 year old will be effected. I am not sure if you have found any positive testimonials on topamax - but they have to be out there since it is used so heavily.

 

I think one mistake I have made when getting new treatments from doctors is not being thorough enough in the questions I asked beforehand. I'm 21 now but I still bring my mother to doctor's appointments. When my doc. put me on topamax I didn't ask about any of the negative side effects - I just started taking it. Just be observant and critical. Other than that you just have to experiment to find out what will work the best

I can't speak for everyone, but in general, people who don't like taking Topamax are those experiencing problematic side effects, especially cognitive side effects. Before you agree to give your son Topamax, I suggest you do some reading and discuss it thoroughly with his doctor. If you don't like what you hear, tell the doctor that and ask that he prescribe something else. There are many, many other options.

 

You can find a lot of information about Topamax on our site. We have an entire section on Topamax HERE.

 

Good luck,

Teri

I was on topamax for 6 months. I became so stupid....When I talked to my neurologist about it, he said "Why do you think they call it dopamax"? I couldn't concentrate at work. I saw my work slipping, I couldn't keep details straight. I just took a leave of absense to get off the meds cause I was so messed up at work and embarrised.

Oh yeah the topamax never helped my headaches either.

It causes tingling in the hands and feet and weight loss

I'm on a low dosage 125mg per day, Topamax had done a great job of preventing migraines for about 16 months. But now I'm one of the unlucky ones that it no longer wants to work in my system. The side affects that I have to put up with are words will not come out in conversation, they get stuck. So I have found I do not talk as freely as I did before. There are some others but this has been the worse thing for me. 49 male w/MAV (migraine and virtago).

I think that some people take too much topamax and only take it to get skinny.  Personally, It does wonders for my migraines.  I still get migraines maybe 2-4 times a month but that compared to every day is wonderful, and they are much less severe.  I am on 50 mg, 2x's a day, but started on 25 mg.  The doctor will work with you both with the dosage.  The memory was an issue at first, but to be honest, I had issues before starting the medicine, and it runs in the family, so it is hard to say if the topamax increased it, but I am also on Lyrica.  I think that the Lyrica is increasing my memory issue more than the topamax.  But now, it is better.  Anyway, medication affects everyone differently.  The only way you will know how it will affect your son is if he tries it.  Is he having very frequent migraines?  if so, then I would recommend this.  But if he is only having a few, then I would go with something that is immediate like Relpex.  I hope this helps.

It made me "stupid". I would forget words in mid-sentence, had short-term memory loss, (i.e. what did I eat for breakfast?) and I felt "foggy" all day. My family physician said that practitioners called it "stupi-max". It did help make the migraines less severe, but I still got them. I would ask your doctor about these side effects - especially if your 17 yo is in school and can't afford to "forget".

It makes you stupid don't take a high dose of it.

I was on it for one month, and during that time I had a break from migraines, but I began to feel confused, dizzy, and brain-damaged. I was a college professor, and I would stand in front of my class and be unable to think of the words I needed to say. It was terrifying. I felt as though I had some form of dementia. As soon as I quit taking Topamax, my brain cleared up, I had no further difficulty finding words, and I swore I would never do anything like that to myself again. One of the doctors I saw told me she would never prescribe Topamax because there is evidence it does permanent damage to the optical nerves and may eventually cause blindness. Another doctor later told me the optical-nerve study was not reliable. So I'm not certain about that, although it is frightening. What I AM certain about is that it affected my brain and made me unable to communicate clearly.

It makes me very aggressive and short fused

I took it for a month,but the side effects were too much for me.  I was very tired and became lethargic, blue, and pretty crabby.

Topamax in fact did help me some but I couldnt afford it. I dont have any insurance and it was going to cost me 300.00 for my med. So I just suffer through migrains and get shots when bad enough.

Short answer it's the side effects.  I'm currently on Topamax. I can honestly say I was hesitant. In fact I ended up in the hospital before I would go on it. It can (sometimes in some people) slow their word recall I guess is how I would say it. It's slowed my thinking a bit at first too. I've been on it now since July though and after the first couple of months everything returned to normal. It is frustrating at first but those side effects at least for me disappeared and the drug is still working at preventing migraines.

I have taken for a few years and it did wonders for my migraines but now I am having issues with my hands hurting, also it did make me several weeks to get adjusted to it.

It can cause weight loss most people I know on it has lost several pounds, also is very hard on the stomach if you are aspirin sensitive.

These are just a few issues there may be others but I am sure others taking it may not have these issues.

I TAKE 200MG A DAY AND IF I DONT TAKE IT ITS AN ATACMACK ATTACK FOR ME IM TO THE EMERGENCY ROOM OR DOCTORS OFFICE TO GET THAT DEMEROL 100MG/PHENERGAN50MG. THEN I AM OFF TO LAL LA LA LAND FOR ABOUT 8 HOURS AMND TE I WAKE AND MOST OF THE TIME ITS GONE UMLESS I AM IN  A CLUSTER OF MIGRINES WHICH MEANS MULTIPLE SHOTS THE WHOLE WEEK AND A STERIOD SHOT TOO MINE ARE REALLY BAD THAT IS WHY I HAVE TO HAVE THE TOPAMAX

                          DEBBIE WOOLWINE BEDFORD,VIRGINIA

Well, it can make your face numb, your hands numb, but it can also help you loose some wait from all the other stupid meds you might be on from the migraines.  It took me about 2 months before I got use to 100mg dosage and have had no problems.  If it gives you the systems just take the stuff at night.  It does not interfere with sleep.

I don't hate being on Topamax, I take 50 mg morning and night.  I really don't think

it does a lot of good for my migraines but I also don't have any unpleasant side effects.  So I couldn't really say that I hate it.

I was on topamax for almost a year, it was great at first.  I lost about 20 pounds, my migraines had become maybe a slight headache or none at all. But the medication soon put me into a fog, I couldn't remember things, I didn't have any motivation - I just sat in front of the tv set all night. Even my work suffered, my congitive thoughts were slowed, I just couldn't function.  Each person reacts different though and I would never say that everyone gets the same side effects. I still love topamax, I just can't take the side effects - so I do not take it anymore.

I started taking Topamax this June and did the increase of dosage of 25 mgs every week (1st week 25, 2nd week 50, 3rd week 75).  I experienced a lot of the same bad side effects that others have stated and also had rapid mood swings with no interest in doing anything.  I also had not one migraine or headache that whole time which was wonderful.  My doc took me down to 25 mgs per day and the bad side effects went away.  The tingling in the hands and feet went away on their own.

 

Just this week the doc increased back up to 50 mgs per day and my body seems to be handling it better.  I have noticed the loss of appetitie but I am such a routine per that I just eat anyway because it is time to eat.

I've been on Topmax for about 5 years now and it has helped me some with my migraines.  I still get them.  Perhaps not as severe.  I would like to know the answer to your question also.  I am also on paxil and calin for Migraine prevention.

I personally just felt more exhausted than when I started taking it.  It did not seem to prevent or lessen the severity of my miagrine attacks and laast but not lease I started to have trouble breathing.  The docs were afraid I might have been developing a pulmonary emblism.

i was on it for about 12 months.  during the 12 months i became very thin and was in a stupor.  i was confused and depressed and had just about every side effect listed including the less frequent ones, but they weren't bad enough to make me quit taking it, just a bit annoying.  i was told that they would subside which they did to a point with the exception of some of the congnitive effects; i could absolutely not do any math at all, my mind worked much slower and i pretty much quit reading because my comprehension and ability to focus my mind was very low.  the migraines were much less intense at first, but i evidently became somewhat immune, so my dosage was increased.  that was one of the worst experiences on a medication that i have ever had; the severity of the side effects increased drastically and i almost had my self committed.  when i finally got it out of my system i then realized how much it really affected my congnitive abilities.

 

on the flip side, a friend of mine started taking it at the same time i did.  it has worked very well for her.  all of the side effects that she experienced, much fewer than mine, did subside and it has resolved her migraines completetly.

For me, it makes my hands and feet numb.  I have to work so I need to be able to type.  Also, didn't notice that it helps the headaches from happening. 

My personal experience with Topmax is that the higher the dose the more mental confusion I have experienced-more forgetfulness I have, I felt more lethargic, have less energy-just a lot more tired, regardless of what time of the day I take it. My 1st doctor had me split the dose in 1/2-took the 1st 1/2 in the AM & the 2nd 1/2 at bedtime. My new doctor said to take it all at bedtime. I still feel tired. I've been at 100mg for about 6 months. I started baby steps at 25mg about 5 years ago and worked up to 50mg within a year of starting. This past year I worked up to 75mg before getting to 100mg. And my new neurologist said I can go higher???? I'm dreading it if that's the case  I already feel like a zombie part of the day and I should not be this forgetful at 46 years of age, and it started about 5 years ago and has just slowly progressed as the dose has increased.

The side effects of Topamax are almost worse than the Migraine. I was on Topamax for more than 2 years and I couldn't hardly understand anything people were trying to communicate to me. The main side effects are Confusion, Diffuculty putting together sentences, Weight Loss, Numbness in the limbs (which for myself & my sister has lasted years after we had stopped taking the medicine and has still not stopped) It made me uncapable of being alone, I had no idea what was going on around me and at times had trouble remembering my own name. You will eventually adjust to the medicine, however they had to keep regulating the amount I was taking to try and help my situation and from that I never really adjusted. I will also say that it scared my employer, family and friends so badly that they called my nuero. because they all felt like he was giving me too much but everytime someone would call he would tell them that the side effects they were seeing were VERY NORMAL!!!!  I couldn't carry on my normal day to day task. I was a helpless. Also the reason we try to get our migraines undercontrol is because it interupts life and daily activity. Topamax interupted my life and daily activities not only while on the medicine but still to this day. 

I was on topamax for about 6 months. It reduced my migraines at first but then the headaches got even worse. My doctor wanted me to up the amount but I could barely function on the dosage I was on.I actually gained 10 pounds when I was on it. Other side affects were word loss, memory loss, tingling of feet and hands,chest pains, and pains up my arms. I wondered if I was having a heart attack but was too lethargic to care. I read taking potassium helped with the side affects and it did make them less severe. I went off when my migraines became so bad everyday that I didn't want to go on.

i'm on topomax(have been for 2 yrs) and i dont hate it. i take 50mg twice daily, usually at 8am and then 8pm it has really reduced my migraines.i've gone from having 6 migraines down to 4. which is a big reduction for me. then if i do have a migraine i take 1 to 2 firocet and that knocks out my migraine in about 25 minutes. if not then its time to go home and lay in a dark quiet room with the heating pad on your head and sleep for 8 to 10 hours. works for me.

Right now, I quit taking it because it was over $3oo.oo a month and I have no prescription coverage that is enough to give you a headache.

 

The side effects can be a lot to deal with.

I was on Topomax for years and although it did help control the severity of pain, the side effects were untolerable and were getting worse. My neurologist never warned me I'd be disoriented, confused, I could not focus on anything. I was isolating myself and not  socializing because I just couldn't function with the simplist conversation. I was having a hard time listening to what people were saying to me and processing my thoughts. It was just overwhelming!!!   I thought I was going crazy, everything seemed so complicated.  

Although I could remember things from my childhood  and the past, my short term memory was getting worse. I found myself getting lost while drivig in my own neighborhood ( my GPS became my best friend )  and even that was complicated to follow. I couldn't remember names of close family members or friends. I couldn't remember my childrens best friend's names ( kids I see all the time ), or my prayers even though I've prayed at night all my life.  Every time I mentioned this to my doctor  he ignored me. He finally lowered the dose but it didn't help and I was still getting alot of headaches, just not so severe. A couple of  months ago I changed doctors, stopped taking Topomax and I'm now on Verapamil. Although I still feel stupid and air headed I know I'm not doing any further damage. PLEASE  DON'T have your child take this drug, try anything else!!!!  See a good doctor there are many options.  Good-Luck!

I don't know if you know this but: Of the many side effects, the most serious one I found was acute depression(I know it was the topomax cuz it went away a week after I stopped taking it)  along with a complete loss of taste. As in, I couldn't taste anything!! It was so bad I didn't even want my favorite foods anymore. No pleasure!

Along with that, I was still getting migrains, just not as many, and they changed.  When I went off of it, the change stayed.

I can see using it *occasionally* or for a brief time to change the type of migrain, but you can't be sure *how* it will change, or even if.  I am not the only person who had these problems, go to a patient forum and see what other folks there say about it.

It has really helped me personally. I went from daily torture to daily functioning with topamax! I do know that many people have side effects. I did have tingling in my hands and feet but it only lasted a couple weeks and seemed worse with cold weather but was tolerable. I also had occassional times when I felt "out of body" for lack of a better term. Mostly when I was sitting at the computer typing, not when I was active, but that also went away within a few weeks. The useful effect for me does seem to wear off after about 8-9 months and then at about a year I head back to the doc. Over 3 years we've increased my dose to 300mg with NO side effects and this time we're adding different meds (trying to find one I tolerate). Amazingly, the topamax did not make me drowsy but now adding even the newer "better" SSRI's are making me sleep constantly along with other side effects.

 

So I say it's worth a try. And give it a few weeks to let the side effects go away. Start low and go slow. That should always be the rule of thumb! Even I am giving each of these new meds at least 3-4 weeks before I tell him BLAH!

 

Good luck! I hope you guys find something that works. If not topamax then something else. Keep trying. I've had many setbacks over the past couple years but when I find a breakthrough, it's a wonderful thing!!!

 

Diane

I have to say that topamax was one of the worse medications I have taken in all my years of trying different medications.

I lost all feelings in my peripherals, even the feeling in my nose! I was on it for abour two years and one day I dropped a washer machine on my foot.  Because I didn't have any feeling there, I didn't realize that there was a problem or how serious the problem was.  That night, I fell asleep on the couch, so I didn't look at my feet that night, but the next morning when i went to get into the shower, I saw my foot.

It was broken in many places and I had a huge gapping wound ( remember, I fell asleep with the shoes on ). I think the tightness of the shoe kept the bleeding down and the shoe kept the bones in my foot alined.

I know that medication works differently on ever person, and I know some have had great success with topamax, This is just my own experience with it.

Topamax put me into 2 of the worst migraines I've ever had.  I was hallucinating.  I was having slurred speech, talking out in my restless sleep.  I wasn't able to function.  The medicine actually brought on the migraines.  I used it one day and it happened.  Waited two weeks before trying again and the same thing happened.  I won't go near it.