my experience of using topiramate for migraine

The Migraine Diaries: My Experience of Using Topiramate For Migraine

January 23, 2021

This is my own personal story of using Topiramate for chronic migraine. I can’t stress enough that I am not in any way medically trained, or qualified to give an opinion on your particular circumstances.  Please talk to your GP.

I was diagnosed with migraine at about 14.  I can’t remember exactly as I am now hurtling into my late 30s.  Needless to say, I’ve lived with them for a long time.  At times they are a mild annoyance that makes me feel horrendous and have to miss the occasional event but at others, they have completely controlled my life with a seemingly unending stream of pain, sickness, nausea and all of the other lovely things that come along with it.  There was also that glorious year of 2009 when I went almost 10 months without a single migraine.

So, as you can imagine, I’ve tried my fair share of ways to try and reduce or stop migraines altogether.  The exclusion diet, yoga, acupuncture, magnesium, feverfew.  And that’s even before we get to the list of prescription drugs.  Over the years they’ve put me on beta-blockers (no effect), anti-depressants (no effect, horrendous side effects) various painkillers and anti-emetics.  Finally, I was prescribed Sumatriptan, which did help to some degree.  Sometimes they would stop a migraine in its tracks and then I would just have to cope with the weird dizziness and feelings of tingling for a while until I could get home and go to bed.  Not ideal, but a massive improvement from having to go home from work immediately and spend the next 48 hours clutching at my head and vomiting every hour.

They didn’t work all of the time though.  My menstrual migraines were pretty brutal, and nothing seemed to be able to help.  In 2014 the frequency of the attacks was increasing, leading me to take more and more sumatriptan.  I was missing days at work, cancelling family engagements.  Even when I didn’t have a migraine, I either had a headache or that good old ‘migraine hangover’ that left me in a fog.  I was experiencing dizziness and ringing in my ears, even when I didn’t have a migraine. So I went for an eye test in case it was eye strain causing my headaches and had my hearing checked too. You can get this done by a specialist or somewhere like Auris Ear Care.  My work was suffering, my hobbies didn’t interest me anymore and I was taking more and more painkillers just to get some relief.

I had to do something.  I went back to my GP and explained just what was happening and how it was affecting me.  He prescribed me something called Topiramate.  I had never heard of it.  He explained that it was a drug to treat epilepsy but that it was now being prescribed more and more for people with chronic migraine.  It was designed to be taken every day and to lessen the frequency and severity of attacks.  If I did get a migraine, I could still take Sumatriptan and painkillers to try and deal with that.

When I got home, I read through the leaflet that came with the drugs.  The list of possible side effects looked absolutely horrendous.  Feeling a bit apprehensive, the drug stays in my medicine box for a few weeks while I weighed up the pros and cons of using topiramate.  I had to do something though, so, shortly before Christmas 2014, I started taking them.  I have to say that they changed my life in both good and bad ways.

The Initial Side Effects of Topiramate For Migraine

I can’t really say how the tablets affected me initially as I caught an absolutely horrendous cold the day after I started taking them so any symptoms were probably masked by that.

After a week or two, I noticed that food tasted different. Fizzy drinks especially tasted metallic and awful.  My appetite his decreased and I lost a bit of weight, which in my case was no bad thing.  This was fairly short-lived though as I adjusted to the medication.

Mental Fog

On some forums in the US, topiramate, or Topomax as it is branded over there is also referred to as Dopamax because it seems to interfere with your brain a bit.  I found that I was constantly searching for words, forgetting things (I usually have a good memory) and was just generally foggy.  At first, this didn’t bother me too much as the constant pain of migraines was doing much the same thing to my brain anyway.

Hair Loss

After about 4 months of taking topiramate, I noticed that I was losing more hair than usual.  In the shower, when I brushed.  I almost took out a Dyson with the amount of hair that was on our carpet.  My hair also turned extremely brittle.  I could literally hear it snapping when I brushed it.

Again I turned to the internet forums and found that this was a common problem. People were posting pictures of their scalps with giant bald patches.  I was horrified that that could happen to me.  My only saving grace was that I am very lucky in the hair department and have absolutely loads of it.  Even though I noticed that I had lost a huge amount of my hair.  Other people couldn’t tell.  In fact, the hair loss didn’t stop until about 4 months after I stopped taking the drug.

Did Topirimate Work?

OK, I realise that this article reads like a list of horrifying side-effects but I’ sure what you want to know is, did it help my migraines? In short, yes it did. My migraines decreased significantly and I felt like I had some control of my life back.  It gave me the chance to get the years of painkillers and triptans out of my system.  The way I like to look at it is that it did a ‘reset’ on my migraines.  I took topiramate for 6 months and then we decided that we would like to try for a baby in the near future so I took the decision to come off the drug.  Over a period of a few weeks, I gradually lowered the dose (under doctors’ orders of course) until I eventually stopped altogether.

My migraines did come back but to a far more manageable degree.  My daily headaches were gone, as were the medication rebound headaches.

Would I take it again?

Probably not.  Unless I find myself in a situation where my migraines leave me unable to function again.  I almost treasure not putting so many powerful drugs into my system anymore, but at the time I needed them and they helped me get my life back together.  The side effects were bad, and truthfully, I don’t think I could have lived with them long-term.

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