New to Topamax and scared of side effects?

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myohmy18
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/18/2011 5:38 AM (GMT -6)   
I literally just started topamax last night....only 25mg for now (will increase in week increments) but doing research online has gotten me scared to even take it? The side effects and even hearing about people coming off of it and maybe having a seizure? Also what about drinking? I have an occassionally few beers (football season) and I'm worried about this...the doctor made it sound like it was ok BUT it makes me nervous???

Any advice?
Thanks :)

Batman55
Regular Member


Date Joined Aug 2008
Total Posts : 136
   Posted 10/18/2011 10:31 PM (GMT -6)   
I was on it for a month, eventually up to 75mg.  I had the same concerns as you, especially about the risk of seizures, because of a family member's epilepsy.  Eventually I got over the fear, though.  However, I found the side effects very annoying... basically more tired than usual, more apathetic, and seemingly I just couldn't enjoy anything.  I also got a lot of acid indigestion which led to excessive belching.  If the Topamax had helped my headache, I probably would have stayed on it longer, and some of those side effects might have gone away.  But it never helped and I got off after a month, reducing by 25mg every week.

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 10/23/2011 1:01 AM (GMT -6)   
I think that the problem with too much internet research is that when people have a bad experience they tell everyone, but when they have a good experience, they don't bother to say much. So you wind up with tons of negative out there to read, while the people whose lives were positively impacted rarely bother to go out on the internet and leave feedback.

I have been on Topamax now since May 2010. I take 125mg per day. I did have the typical side effects, most of them kicking in after 75mg. The only side effect that lasted beyond a few months is a complete aversion to carbonated beverages. :) As for alcohol in moderation, it is highly unlikely to cause any problem at all. My RX doesn't say avoid alcohol. It says that it may cause drowsiness and that alcohol intensifies this effect. So your doctor wasn't lying to you that your occasional beer won't hurt anything. You might not want it if you get the carbonated beverage side effect, but the alcohol itself probably won't do anything but make you a little more sleepy than normal.

As for having a seizure coming off of it, your doctor would wean you off of it the same way you were put on it, very slowly backing your dosage off. And it would be a very, very small risk to start with.

I know I don't regret taking it. I quite literally dread the idea of it one day losing it's effectiveness and having to start the search all over again for something to keep my migraines under control. Best wishes to you in whatever you decide to do.
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

lotus flower
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/23/2011 9:22 AM (GMT -6)   
I was told I have hemiplegic migrain and was put on Topamax for 5 month ago I worked my way up to 100mg a day and the side effects were horrible I nearly lost my mind, confusion/crying, panic attacks,I felt as though I was having a break down. I was off work for 10 weeks, they have blocked the migrains but not the auras I am now on 15mg topamax sprinkle a day they are going to try epilim next week

kath109
Regular Member


Date Joined Mar 2011
Total Posts : 23
   Posted 10/30/2011 3:32 PM (GMT -6)   
Hey!!
As other people have mentioned I think if you read too much on the Internet you will actually get really freaked out and start experiencing the side effects because of that. I have been on TOPAMAX for 7 months now and it has drastically decreased the amount of migraines that I was suffering from. In addition, I am glad to say that I am a University student in my 3 year and my grades have not dropped whatsoever..thus my concentration levels are the same.
I go out a few times a month and tend to have a couple (sometimes more than a couple) of drinks with friends and the only thing is that your tolerance to alcohol is lower. It doesn't make me sleepy though. All in all, for me, and hopefully for you, Topamax is a great thing for migraines. You will slowly get used to it.

jewishmother
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 10/31/2011 9:52 AM (GMT -6)   
Topamax is certainly worth a try...........it can be very effective for some people and for others the side effects outweigh the benefits. As with most migraine drugs it is a good idea to start with a low dose and slowly titrate up. Good luck!

deltaforce
Veteran Member


Date Joined Jun 2010
Total Posts : 2256
   Posted 11/6/2011 5:08 AM (GMT -6)   
I am not that regular on this board but this is another migraine sufferer, who took Topamax 125mg for almost 6 months, till I ended up in ER for kidney stone. This is one of the rare side effects of Topamax. My urologist initially though that it could be as a result of Topamax. My neurologist also agreed to that and I discontinued its use. I always thought it was working on me but in retrospect, it wasn't. Now I am on Verapamil 240mg and its a bliss. Not that I am free of migraine but frequency has reduced to once or twice a month. Just had a latest episode last night.

So my recommendation would be, keep a close eye on, if its working, maintain a diary. Wait for 6 months. If its not showing significant improvement, switch to something else.

BTW, have you tried any of triptans?
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily,
Imuran, 100mg + 50mg
Vit. B12, 1mg
Multivitamin, 1 tablet daily
Fish oil 1200mg daily
Vit D 2000 IU daily.

Verapamil 240mg for migraine, Migraine episode now at least twice a month,
Ibuprofen 400mg is the only solution (but leads to bleeding). Looking for alternatives.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/12/2011 2:05 AM (GMT -6)   
The percentage of Topamax to HAVE a seizure is SMALL. How I know? *waves over here* I was one of those guinee pigs who tested it to make sure it was safe for humans before it was FDA approved. Now, topamax is NOT only a migraine preventive but ALSO a Seizure Preventive... to prevent them. Not only am I on it, I also have my bff on it, and he takes it to prevent seizures due to his tramatic brain injury from a car accident. The only things I really get is hot flashes and muscle cramps. Every month I had 16-20 migraines. Topamax within a month seriously helped and I only had 3-4 migraines a month. So I'm looking at it this way: deal with a few hot spells and cramps or have a migraine almost every day. I picked the one with less pain. Mods, this is soO personal experience and not medical
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Not So Fancy
Regular Member


Date Joined Sep 2011
Total Posts : 41
   Posted 11/13/2011 10:52 PM (GMT -6)   
I take 100mg of Topomax a day. I haven't had a migraine (was having them daily) in 4 weeks.

The side effects I have are the aversion to carbonated beverages, and the tingling/numbness in feet and hands. The tingling numbness is getting worse, today was actually a bad day for it, my feet were actually in a lot of pain from it.

WITH THAT SAID....

Being headache free is so worth it to me.

But I still may try and find a different medication to take as it reduces the effectiveness of birth control and it may or may not be contributing to other things (hallucinations/confusion/etc).

grneyedgemini
New Member


Date Joined Apr 2013
Total Posts : 2
   Posted 4/11/2013 8:10 AM (GMT -6)   
I just started Topamax for Migraines and Seizures after wrecking from a seizure I started seeing a Neurologist. Does anyone know how long the side effects last? Or how long it takes for the meds to get in our system? I start 25mg for a week then up to 50 mg.

thanks in advance!!!

krislyn1
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/13/2013 9:34 PM (GMT -6)   
I have been having migraines for the last 11 years on and off.  I have been on and off of Topamax as well.  It seems that my doses will go up and down depending on how frequent they are.  The last time I had to come off of Topamax because I thought I was losing my mind.  Before then Topamax did a wonderful job of helping me while I was in the military but I did get pulled off of ship until I passed the first month of the tingling in the extremities.  The systems can be annoying but if you work through them and work on the dosage can be really great unless it does something to worsen your problem.
 
I am taking Topamax 25mg as I just started on Wednesday and I'm also on a trial of Lunesta for sleeping but I had been on Ambien 10mg for sleep.  Just hope that these two work together or I can find something to help me sleep while I'm taking the Topamax.
 
Thanks for all the info that I've read so far.
Kristy

AAndrews2177
New Member


Date Joined Jan 2013
Total Posts : 4
   Posted 5/1/2013 1:48 PM (GMT -6)   
I did the same thing when I first started on Topamax, googled! Bad idea. TONS of negative reviews about the medication and only a few positive ones!

I've been on Topamax for 3 months now (100mg) and am VERY pleased with its results. Down to 5 - 6 migraines / month and they have drastically decreased in severity. As for side effects the common ones, carbonated beverages taste terrible, tingling in my feet and weight loss. Weight loss has been a big one for me. Started at 142lbs and am down to 124lbs simply because I have almost no appetite. My neurologist recommended keeping a food journal so that I'm able to actually see how little I've eaten through the day and that will encourage me to grab a snack!!

Those minor side effects aside, I am quite happy with Topamax. Just saw my Neurologist the other day and she mentioned that in 6 months we will start tapering down the dose and that is worrisome because I definitely don't want more migraines!!!

I definitely would recommend this medication to migraine sufferers who did not respond to Elavil / Propranolol or other preventatives!!!

PhlebotomistEh!
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/12/2014 7:17 AM (GMT -6)   
Topamax can be a very tricky drug, tomorrow it will be 1 week of 25mg twice daily for me, my side effects have been somewhat scary but I think I will tell my Dr. I want to keep trying even though I really want to give up. I literally feel like an old refrigerator that is about to break, I am vibrating from head to toe like I can hear it., I have pins and needle at random times in ramdom places, couldn't walk yesterday because my feet and knees were so numb, like they weren't even there. I have this addiction for Sudoku, I can finish the iabolical ones without hesitation but last night while playing I got extremely confused and couldn't understand the puzzle for the life of me and had no recollection of ever doing one, right in the middle of my game I became very frightened as I immediately knew something was wrong. I put my book down & went to bed by the next morning it was back, I finished my puzzle :) I have daily migraines for the past 3 years and for the past 11/2 years A huge number of neurological problems due to having 3 botched spinal taps done by an ER Dr. then the anesthesiologist came up gave the doctor **** right in front of me she was going way too low, then he gave me my 4th spinal tap the day after I passed out 3 x before having an emergency bloodpatch epidural, It has been a nightmare from HE... since then :( So far only side effect from the topamax but I figure I owe it to myself if there is a chance I can be migraine free I will take it. I am trying to talk my Dr. into nerve decompression, I hear it works no pills, no pain, sounds like what I want. Only problem not too many Dr's do it I would have to go to Cosmetic surgeon and pay out my donkey lol.

Mtnestes
New Member


Date Joined Feb 2014
Total Posts : 3
   Posted 2/18/2014 8:21 PM (GMT -6)   
I have been on Topomax for 12 years, various doses. At 150 mg/day or more I experience mental sluggishness and severe weight loss. Eventually I cut down to 100 mg/day after a lose of 55 lbs and a loss of several jobs. I now work hard to maintain a weight of 100 lbs because Topomax caused every food trigger ever thought of to trigger and I can't eat anything. However, it is the only thing that greatly reduced migraines but never got rid of them. Prior to Topomax I was on Verapamil- didn't do much and Elavil-worse side effects and a bear to wean off of.

SickofSickness
New Member


Date Joined Apr 2014
Total Posts : 1
   Posted 4/23/2014 6:27 AM (GMT -6)   
I have severe migraines that used to number about 20 a month, some got severe enough to send me to the hospital because I couldn't move or function without throwing up everywhere. I was on Topomax for four years and now suffer from permanent memory loss problems. I was on it from ages 16-20. I do not remember parts of my sophomore and junior years of high school and while I was on it, I would go places and completely forget where I was or what I was supposed to be doing. This happened frequently at work and eventually began to affect my work there and at school. I took it in combination with Amitriptalin (pretty sure I spelled that wrong) and Maxalt, both of which stopped working for me and I discontinued while taking Topomax.
While the drug did help with my migraines, it has left me with a permanent mental disability and I DO NOT recommend it to those who already have memory issues. I am 22 and it is scary to know that I have already lost so much of my memory because of this medicine.

I would also not recommend drinking while on this medicine. I was told by my neurologist, and by the handy black box label, that drinking while on this medicine can cause seizures, even in those who do not regularly have them.

angel1509
New Member


Date Joined Apr 2014
Total Posts : 6
   Posted 4/30/2014 1:43 PM (GMT -6)   
Topomax I had severe migraines about 15 or more a month when I first went to see a neurologist he put me on several different meds. Nothing helped, then he put me on Topomax, started me out with 25mg at night, still had migraines. Bumped me up to 50mg no migraines at all, the only thing that was bad, is I lost a lot of weight. So he took me down to 25mg and add Lyrica at night only, tired yes but that passed as I took it and still do take just the Topomax now. I am off the Lyrica and take Serquil to even off the weight loss if any that I have now. Its been a life saver for me, the side effects go away after awhile, do not be afraid, just be cautious. good luck!

Neurotic8
New Member


Date Joined May 2014
Total Posts : 5
   Posted 5/17/2014 2:11 PM (GMT -6)   
I'm supposed to take 25 mgs in the morning and 25 mgs before I go to sleep for my migraines. This has been the plan with my neurologist months ago. Me being me, I read a lot and got discouraged because I didn't want it to interfere with my concentration (as my concentration is already compromised due to ..depression I'm assuming, but that's another story) and I'm a medical student with exams all the time so I can't afford that. Can anyone enlighten me as to whether or not a low dose of 50 mgs would cause the concentration loss?

Ceebee123
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/20/2015 6:44 AM (GMT -6)   
I agree..
Not everybody has positive comments, only negatives..
I've tried every pain killer/medication going..
Having migraines is the bane of my life,
having experienced them for the past 5 years
its got the point where I will try ANYTHING!
to stop them from taking over my life..

I was on Topimax starting from 25mg for a week,
that didn't work so i went up and up until I got to the dose which worked!
i think it was 75mg/100mg

This medicine was a god send, the best thing i've ever tried,
the whole 3-4 months, I didn't experience 1 headache!

My hands and feet tingled slightly, carbonated drinks didn't taste the greatest
and I lost weight, but that's not a bad thing!

The worst thing was the 'depression' I don't like to say depression as it was false,
but I was constantly emotional, and was very sad and lifeless.
which is so unlike me!
I also had a few confused days, but I would take those confused days and the pins and needles over headaches any day!

Eventually the depression got to much and I had to force myself to come off it,

the headaches didn't return for 3 weeks, but came back with a vengeance!

I tried topimax again 3 months later, hoping that with my new knowledge I could win, instead of depression this time,I had even more painful headaches during it , so tables turnt. I came off them again!

6 months later, I am now a week into my 3rd Topimax try,
Hoping for the best and staying optimistic !

If it doesn't work, I will give up on this one forever.
It is does, its a success!

1 tip, keep an open mind, and try things for yourself!

Sometimes its mind over matter with things people write, and don't believe everything you hear! :)

Daughterofflight
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/24/2015 9:51 PM (GMT -6)   
I am new to the world of medication for my migraines. I have basically just suffered through them until they became a daily thing and I just couldn't deal anymore. My doctor prescribed Topiramate recently with the warning that I would definitely have tingling in my fingertips and my cognitive function would be slower. (I definitely don't need the help)

With this in in mind I was desperate for the relief. I followed his advise of starting with 25mg a day for a week and increasing to 50mg a day after that. The nausea was instantly something I noticed. Undeterred, I continued. It wasn't until I started having dizzy spells and a few other side affects that I actually googled the side effects. I was a bit surprised to realize I was experiencing every side effect that was listed on the major websites including their own. Nausea, Tiredness, dizziness, tingling, confusion, weight loss, speech problems, troubles with coordination, changes in vision, double vision, difficulty with memory, sensory distortion. All of these things, I was perfectly fine with so as there were no migraines.

It has been 22 days since I started taking Topamax. I had some unanswered questions, things that have come up in the last few days that were concerning. This forum has helped immensely, so I figured I would share my experiences. I have experienced a few minor headaches. These mostly occur when I have forgotten to take a dose or take it much later than I should have. The confusion and lost of concentration has been truly the hardest part. I am full time student as well as working generally full-time in technology. I regularly loose my train of thought. Recently, I was visiting with a friend. His building has a door code that I know and use frequently. I punched in the first number and I froze. I couldn't for the life of me remember the rest. I called him and he attempted to walk me through it but I just would not recall. I have worked rigorously on a paper for class and then forgotten to turn it in. Recently, I was mid sentence and I forgot what I was saying mid way through. The nausea and dizzy spells come and go. The lack of appetite has been a pretty nice side effect, to be honest.

The reason I visited the forum today was to see of my panic attack today was a side effect. It was comforting to know that I wasn't crazy. I have never experienced this before. I am pretty confident that this is going to be a good thing for me. I had been considering contacting my neurologist to ask for a different medication until I began reading other people's experiences. Knowing I am not alone makes me feel better. Also reading how other people started to even out after a few months gives me hope. I hope this helps someone who is considering switching. I feel pretty great right now. The best part is I don't have migraines. That's why I started taking the meds. I just need to talk to my professor and hope for some understanding and all will be great!

Calen
Regular Member


Date Joined Aug 2014
Total Posts : 36
   Posted 4/27/2015 7:53 AM (GMT -6)   
I've had daily migraines since I was ten. Started first on elavil but had to keep upping the dose so then I was switched to Topamax in high school. It's been wonderful and really cut down my migraines. I did experience weight loss and have tingling occasionally in my fingers. Occasionally I forget a word or get spacey but ill take that over daily horrible migraines. I'm 24 now, pretty well migraine free (*knock on wood*) and don't plan on going off. I'm only on 50 mg but whenever I try to taper further they come back with a vengeance.


Also ill add I do drink a little despite knowing it's not advised and it does make me very sleepy and a real lightweight. Go slow and be safe if you choose to do this.

Post Edited (Calen) : 4/27/2015 7:56:02 AM (GMT-6)

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