Topiramate and Migraine

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I have had a constant headache since the age of 6 that would escalate to a migraine once or twice a week and sometimes hang around for two or three days. I am now 32. I have seen every doctor, specialist, quack and witchdoctor you can imagine and have been prescribed every cure, remedy and potion with little or no effect.

I have had every scan available and every allergy test and have been on every diet.

Six months ago I started taking Topiramate after speaking to a neurologist friend of a friend. I have since had only one migraine and my headache has subsided to a dull ache.

I started on 25mg twice daily and doubled the dosage every 2weeks peaking at 100mg twice daily.

In the beginning I suffered with the worst heartburn possible but find that taking 40mg Omeprazole (that is a big dosage but I weigh nearly 100kg) with my nightly dosage of Topiramate sorts that out.

I did have some taste perversions in the early stages of the treatment where I got confused with the taste and smells of things (this is a problem as I am a chef) but that has disappeared.

I do still have some mood swings but not as severe as in the beginning where I went from ecstatic to tearful in seconds.

I have been rather clumsy and have had a few falls breaking my arm in two places in one fall and putting my knee through the wall at the bottom of our stairs in another but I seem to be coping better with that lately. I am not sure if I am compensating for my lack of coordination by being more careful of if my coordination has improved but I don't seem to knock quite so many things over

On the plus side I have lost about 10kg!

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5 Replies

  • Posted

    I've just started topiramate about 5 days ago and I feel muggy headed in the morning and I sleep like the dead and wake up after 8 hours of uninterrupted sleep feeling like I need to sleep for at least another 4. This is reminiscent to my experiences on pzotifen where i wandered around in a drug-enduced hazed trying to complete my MSc in geophysics (hmmm, but i made it i think) for over 3 months. It's not as bad as that and considering pzotifen made me gain about 7kg (huge appetite increase) and turned me into a monster (massive violent mood swings - i'd take crying over fighting any day), I'm so thankful that you wrote your experiences on topiramate.

    I can't imagine what it's been like having a headache since age 6 and you're 31. I started with massive dizzy spells and two day migraines age 19 and they've come and gone since then. I know maybe 1% of what you're going through but I'm 1001% happy for you. My face reading your post went from :shock: to sad to smile to :D . The last one was for the 10kg and hope that I can follow in your steps.

    Thank you. Thank you for sharing. I'm going to persevere with the muggy/dizzy/tired feeling as it's not as bad as before and nothing on what you've put up with. So it's doable. You're my proof and my hope.

  • Posted

    Can I just add my info here? I just wanted to share my experience because it is so opposite. And really shows how people have different reactions.

    I started yesterday. I took 2x25mg 1x did not put me to sleep, so took another. After 1 hr took another. At 3am knowing i had to get up with my two kids in the morning took 2 Quetiapine sleeping pills. And could not fall asleep due to the intense diaretic and stomach cramping of the topiramate. (hindsight is 20/20) and was in the bathroom all night with diarhea and water.On the plus side i woke up much lighter and much wiser. =)

    • Posted

      i just wanted to summarize (this forum does not allow editing agh!)

      I will be taking 1x25mg in the morning

      I will be near a toilet 1.5 hours within taking this med

      I will expect dizzy spells

      I will expect stomach aches and cramping

      I will expect water loss and diarhea

      I will expect dehydration

      I will need to increase my H2O /water intake!

    • Posted

      Your side affects sound similar to mine. I started on 25mg at night expecting to be knocked out as others has said. All it did was make me sleepy during the day. After a few days it started to make me snappy and I could no longer sleep for longer than 4 hrs at a time. This made me even snappier and after another week or so I started getting diarrhea, cramps, pins and needs, memory loss, nausea (although I haven't lost weight) and dehydration. Highest dose I went up to was 75mg but the insomnia and zombie-like side affects got so bad I couldn't take anymore. I am now in the process of weaning from this drug.
  • Posted

    Hi, I have suffered from chronic headaches since about 10 years old and have always been fobbed off by doctors until I was 21 when I kept a headache diary. After trying a number of different medications and changing surgeries I've now been referred to a neurologist (I'm now 26). Three weeks ago I started Topirimate, starting at 25mg and to be increased weekly until I reach the max dosage of 500mg a day. So currently I'm on 75mg a day.

    I am starting to be quite scatty and forgetful, I can find it quite hard to follow what people are saying. I'm getting pins and needles in my feet and I get really really itchy. I'm having mood swings, I quite often feel like I can't be bothered to do anything and today I'm feeling very down. I just want to know, is it worth sticking with? Will it get better? I'm on such a low dosage and have got a long way to go until I reach 500mg - on the plus side I'm down to 2 headaches a week so far...


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