Advice on Topamax please! (I'm scared to try it!)

Hi all, wanting to get some info on Topamax (side effects, etc) because everything I’ve read has scared the @!@^*& out of me, but it seems to be the one (and only?) drug that works for the fluorescent light trigger!! So I’m definitely interesting in bringing it up when I visit the Neuro this month. This is my biggest and worse issue, by far. The vertigo and head pain that these lights trigger in me is absolutely disabling, and has taken my life away from me. I’m so willing to try this drug, but really want to know what all to expect for side effects… because I’ve heard it has some serious effects goin’ on. :expressionless:

A little background:
I’ve been on Amitriptyline for a good 6.5 weeks now, a low dose of 12.5mg at night, and it is working some but definitely not completely. I notice some relief at home for the severity and quantity of migraines, but barely at all when out and exposed to fluorescent lights!! I’ve had 2 instances where the lights actually didn’t cause vertigo/head pain… but only two. I’m still now having the issues since those 2 marvelous days :slight_smile:

I finally see a Neuro on the 28th of this month, he sounds like an amazing and intelligent man, so I’m hoping for the best! I’m wondering if I should continue with Ami, raise the dose, or just try Topamax right now… because like I said above, it seems to be the only drug that people have had work for their fluorescent light trigger. THAT IS MY BIGGEST ISSUE, by far! If I could get rid of that trigger, or atleast knock it waaaaay down, I could have my life back. Right now I’m an unemployed, unable to work, disabled, single mother. And the worst part is that I was living my $40k/year life, so I have lots of bills to show for it that I can no longer pay now!!! This is horrible, so any info or suggestions on what has worked for this is SO SO SO much appreciated! Thanks!!

All I can say is I was freaked out about trying Topamax too, but don’t let the fear scare you. I have been on it for over 3 months now and titrated up to 75mgs slowly. No real bad side effects, and any minor ones only last a few days while titrating up. So far it has not helped with my symptoms, but it has not made anything “worse”. I have learned that people on the internet tend to over exaggerate or perhaps suffer from high anxiety (as most of us do) when they discuss drugs online. Plus, everyone reacts differently. Don’t knock it until you try it. Also, once you do try it, please ride it out for awhile as it does take your buddy and mind time to adjust. Think about it, the drug is designed to change the chemistry in your brain, so obviously you will feel differently, which usually means “worse” before “normal”.

I’ve been on Topamax (topiramate) for over 6 months now. For me, most of the side effects with Topamax came when starting up and when changing dosages. I experienced 5 or 6 days of extra dizziness each time. Outside of that I’ve had very few side effects. I did have one kidney stone that may or may not have been related to the Topamax. It has worked very well for me at combating the light sensitivity problems that I had. I had problems with all artificial lights, including fluorescents. Fluorescents were the worst, but any artificial light was a big problem for me pre-Topamax.

The one major issue with Topamax that I know about (which is rare) relates to your vision, and if you have any major vision changes when starting up on Topamax you are supposed to talk to your doctor IMMEDIATELY. Outside of that it’s mostly about how you tolerate the medication. Some people tolerate it better than others and seem to not have any problems, while others feel really doped up on it. So you really have to just try it out to know.

Jamie,

I am taking Topa mostly for visuals, including photophobia. I am on day 5 of 75mgs. Like you said, I feel a little more dizzy and lousy after going up, but I think that is normal. But overall, my vision has not improved at all yet. Have you seen improvement yet? What dose are you on? I think some days the brain fog feels a little better, but that’s about it at this point. I seem to have some very rare visual symptoms compared to most people on this forum.

I am on 100mg. I don’t really have any visual symptoms per se. I was just getting migraines that were triggered via artificial light. So I don’t know if that is comparable to what you are experiencing. For me, the artificial light was leading to me feeling a large rocking sensation, similar to being on a boat. The longer I was exposed to artificial light, the worse the rocking sensation was. The topamax knocked that out for me pretty quickly–probably within 2-3 weeks. But that is faster than it usually works.

1 Like

OK, that is way different than what I experience. I sure wish I noticed a difference after a few weeks!

Thanks :slight_smile: I too have issues with other artificial lights, but I can handle incandescent lighting pretty well. Fluorescents are an absolute nightmare! I guess I’m not really sure about LED and Halogens, since I’m not sure if I’ve been exposed to them.

The vertigo I experience is like a boat feeling as well, but then I also get other symptoms as well, such as muscle tension (face, jaw, neck, head, and shoulders), disorientation, and migraine headache.

I’m going to ask the Neuro about giving it a shot and see what he thinks. I guess my biggest worry is because I’m super sensitive, probably from the fibromyalgia, and have reactions to many chemicals, environmental, meds, and foods!

I wanted to add that mine also continues to worsen throughout the exposure time, and I feel like if I stayed exposed, I’d black out. I also get this from computers, but not really laptops. Once I get away and into natural lighting, the vertigo normally goes away immediately!! The head pain stays though, normally for days after!

There isn’t really any reason why a standalone computer monitor would affect you but a laptop wouldn’t. A laptop is just a portable computer monitor. It could be that your specific laptop screen doesn’t bother you as much as your specific computer monitor. For example, my wife’s Dell laptop didn’t bug me much at all, but my MacBook is one of the worst screens I’ve ever used. It could make me sick in about 5 minutes. Every screen is different. The MacBook screen affected me because it was strobing horribly at about 140 Hz.

Interesting, my laptop is a Dell as well :slight_smile: I’m not sure I’ve ever tried another laptop, but I know i’ve tried numerous desktops that bothered me within 10 mins. I thought maybe it the was type of backlight? The flicker rate could definitely be the cause though. I notice too with older, box TVs, they do tend to bother me after a bit as well. But slim plasma’s don’t affect me. I’ve got a lot to learn about triggers still I see!

As far as flicker rates go, what do you find the easiest to handle? Fast, slow? I know nothing about this.

Starting the medication and dose increases made my dizziness worse for about 6 days each time. But otherwise, there are pretty much no side effecs. I would not be afraid of this med.

I was afraid too- I had my prescription filled for a full week before I took my first dose. It sounds like a scary med for sure, there are a lot of potential side effects and the way it works in your brain is fairly complicated. They don’t even know really why it works for MAV. But for most people it is safe and well tolerated, and the side effects are few and short lived.

My Dr. knows I’m nervous about meds and am sensitive so she started me on 25 and kept me there for 1 month. She just bumped me up to 50 and if I manage that okay we are going to stay on that for 3 months. Most of the bad side effects people have with topamax are during titration so going slowly is one way to make it easier.

What I’ve noticed: during the first week- increased dizziness (only slightly), imbalance, coffee induced panic, trouble saying some words, nausea, complete loss of appetite. All these things went away after the first week as I adjusted to the med.

Things that didn’t go away: Carbonated drinks taste flat- this is strange. They only taste flat on the front of my tongue, weird sensation. Some other things don’t quite taste the same (a potential problem- my job is to create and taste food). My appetite hasn’t come back completely, I’ve lost 15 pounds. Mental focus is sometimes still an issue, but I think this is from the condition, not the med.

Positive side effect- I think it is easier to handle the stresses of my job and I also feel like my mood is more stable. Overall I am very happy I decided to take the topamax! I hope I do well at 50 and it controls my MAV better, I would like to stay at the lowest dose possible.

Good luck with whatever you decide to try- none of this is easy, but I hope you find some solutions!

The issue is that the flicker rate is NOT published. This is not like refresh rates on old monitors where you could set it. This is how they control the brightness of the monitor, by rapidly cycling the backlight of the monitor on and off.

Dell seems to be pretty good about having monitors that do not exhibit this problem. I have measured several Dell monitors (desktop and laptop) with a digital oscilloscope) and found them to be flicker-free. LED-backlit LCD monitors tend to be the worst, as the instant-on-off properties of LED light combined with the on-off cycling can cause problems.

It isn’t about fast or slow per se. It’s about being fast enough that you can’t see the flickering but not fast enough for your migraine-sensitive brain to NOT notice it. The speed that causes the problem is somewhere in the 100-200Hz range dependent on the person. (higher numbers means faster flickering) Actually, anything below 200Hz can cause problems, but if it is much below 120Hz you will be able to SEE it, so no quality monitors will do that anymore. The problem is, a lot of companies only turn up the backlight flicker speed just enough until you can’t see it anymore, which is in the 120-180Hz range. The problem is, tests have shown that migraine-sensitive people can still be hugely affected by flickering light at this frequency, even though we can’t see it. So we can have massive migraine attacks triggered by the flickering even though we can’t see it. As I said, the worst I’ve seen for this was my MacBook. I think it was flickering at about 140Hz. I renamed it the MigraineBook.

Once the flickering gets above 200Hz or so, there is really no problem. Our brains just can’t detect the flickering anymore, even if sensitive instruments can tell us it is there. My TV set flickers around 400Hz and causes me no problem at all. The threshold at which problems are caused for you is called your “flicker fusion threshold”. Most people have a threshold down in the 100-120Hz range or even lower, but migraine sensitive people are much higher. The problem is, we are only 10-15% of the population so monitor manufacturers often forget about us when they are making their stuff.