Topiramate for migraines

[GirlAtTheRockShow]

Does anyone take topiramate for migraines? I'm currently on 100mg per day (50mg morning and 50mg evening) it's really working but it's giving me pins and needles in my fingers and toes (known side effect) anyone experienced this and can vouch that it does fade over time? I've been on them for two weeks and really have noticed a difference in reduction of migraines, so if I can live with this side effect then I will! TIA for any replies

Hi, I have been on topiramate (currently 75mg am and pm) for chronic headache for 2 years. I get pins and needles as a side effect, and it barely ever bothers me, unless I am altering the dose upwards (I reduce then go back up every 6 months or so), or if I am doing very intense cardio (rarely!).

Thanks @lyrebird1 x

Hello @GirlAtTheRockShow

I was on topiramate for migraine. I seem to remember the pins and needles early on. It either got better or stopped bothering me as described by lyrebird1 because I don’t remember it being an ongoing issue.

I know it’s not what you asked but I found I had to stop taking them because of how they impacted on my mental health. Which is a shame because they worked wonders for the migraine. I think the problem occurred because of the dose being increased too quickly. From what I read afterwards they can be very effective but need close monitoring from your GP.
I’m hoping your GP is doing that and that it works out well for you.
I don’t want to scaremonger, just a reminder to look after/keep an eye on yourself.

Here’s to migraine free days

I had terrible side effects and it made my migraines worse. Wish I hadn’t listened to the neurologist who told me to work on through the side effects and keep increasing the dose. Nasty stuff.

And don’t even get me started on coming off amitriptyline...

Hi @Itsel!

Thanks for the info, really good to know that your pins and needles faded with time! Very very interesting to know about the mental health angle... I have been feeling rather low since taking them to be honest, dose hasn't been increased slowly, I've just been put straight onto 100mg per day (unsure if it should have been or not?!) I had put it down to perhaps PND and was planning to revisit the docs this week to discuss, but now that I'm aware this is a side effect (wasn't before) I can be forearmed that maybe it's not PND (was coping fine before topiramate really)

Hi @QueenofWhatever!

Sorry to hear that it made yours terribly worse! hope you've found something that works now?

I can’t remember dosages etc, just that it needs to be increased very slowly and monitored very carefully.

I wouldn’t be surprised if it was the topiramate making you feel low. Especially if you were ok before taking it. I’m glad to hear you’re going to see your GP so will be discussing this. I think I’d do some research first and go armed with information. I remember talking to my pharmacist being very helpful (more helpful than the GP about the meds, doses, increasing in increments etc) so it might be worth doing that too.

I really don’t want to alarm you but I tend to agree with QueenofWhatever about wishing I hadn’t listened about ‘working through’ the (MH) side effects. I did feel much better once they were out of my system but it wasn’t worth what I went through.

Of course it’s different for everyone and you may be fine in time, but it can be hard to keep a check on your MH when your MH gets bad if that makes sense.

Look after yourself x

I'm not a medical professional but that seems like a massive starting dose to me. I have recently been started on the same drug but at a much lower dosage. I took 25mg once a day for 1 week which I was told to increase to 50mg once a day only if I wasn't having any bad side effects. I now have to go back for a review before deciding what to do next. I am still getting headaches at that dose but just normal headaches so it is working. I do get tingling, usually in the morning. I take my dose at night. I did have sone nausea but that seems to have settled.

Thanks @Itsel, after discussing it with my hubby, I think the same, that it appears it's the topiramate that's making my mood low, such a shame as it's really improved my migraines, but it's in no way worth feeling this way mentally! I'll definitely do a little research myself, unfortunately the Drs can't know everything about all drugs I guess and the more informed I am, the more I can protect myself from misinformation! Thank you, I will look after myself, as soon as I began to feel low I told by husband and my parents as I've got my little boy to look after so knew that I didn't want to spiral lower x

Hi @Passmeabrew - thanks for replying! Yeah; I wasn't sure about the dose myself until a PP said about it being high and now you've said it too, so that's something I'll definitely be bringing up with the GP at my appointment when I go, not great if I've been started on a doseage that's too high I hope that it works for you in the long run with no nausea

Have you tried low GI to help with migraines? It seems to really help reduce occurrences for me. Also the mini pill to lower hormone peaks and troughs. I used to have daily headaches and 3-4 migraines a month but more recently I'm down to 3-4 per year.

I've been taking it for 10 years now and have only stopped for pregnancy/breastfeeding and it changed my life.
I used to get several migraines a week that lasted days and now I may get one a month. And even that is well managed.

My dose was titrated up very slowly to 200mg a day so I do think you've started on a fairly high dose. I remember when initially starting it and restarting after pregnancy etc I did have a feeling of fuzziness and pins and needles. But it all passed.

I'm going to go against the grain in regards to MH issues you may be feeling, I'd give the drug a little longer. Your body may take a bit more time to adjust to it but do speak to your GP/neurologist in regards to dose.

That’s really interesting about the mental health side effects. I was taking it about 18 months ago around the time of an important relationship ending. I struggled emotionally and I thought it was because of that. It hadn’t occurred to me that there were both mental and physical side effects.

It makes much more sense now. Wish even more I hadn’t taken it! My dosage was similar to yours OP. It was a really difficult time for me and I felt so much better once it had fully worked its way out of my system.

Thanks @PretzelPrincess - I was on this doseage previous to conceiving DS and it was working with no adverse effects and this time, again, it's working great by way of keeping migraines at bay, which is why I thought nothing of the MH issues this time around - it was only when @Itsel mentioned her experience that made me think I would like to still stick with them potentially, but unsure if the effect on my MH long term is worth it, will discuss with GP and ultimately decide what's best going forwards I think

Hi @GoldenBlue - diet and hormones aren't triggers for my migraines, it's mainly my sleep patterns and stress levels that are my main triggers - with a new baby in the house, sleep isn't something I'm getting much of so I'm trying to get my medication back in order to try and help! So glad that's worked for you though, thank you for the advice

If it works for you but its the side effects that are a problem you could ask about trying a lower dose? I do think this is one of those you have to taper down slowly on though so do discuss it with a doctor first! It may be that you just need to find the best balance for you? So frustrating when sleep is a factor and is also a key thing for mental health......as again not easy with a baby in the house!!