Topiramate side effects and other options for preventing severe migraines

[Letsaddanother]

I’ve been getting really terrible migraines and was suggested taking topiramare by the doctor, I started on a low dose and gradually increased over a 6 week period.
I felt like I was going crazy, I’m self employed and work at different houses during the day, I couldn’t remember where I was meant to be working, forgetting words, my performance in the gym went down and everyone noticed the difference in me. The kids starting calling me ‘loopy’ so I stopped as I hadn’t had a migraine since May and I usually get them in clusters so thought that period may be over and it’s been fine until Thursday evening when I felt another one starting, I’ve been sleeping on and off all day today and it had me awake most of the night in so much pain I don’t know what to do with myself. The only thing that gives me a tiny bit of relief is pinching my forehead above my eyebrow - which is now massively bruised.
any other ideas of what might work to keep the migraines at bay? I’ve tried aspirin, cocodamol, ibuprofen, migraleve, sumatriptan And none have them help.

The migraines are awful and floor me for days with awful pain and nausea.

See a neurologist who specializes in migraines. There are lots of options left for you to try. Gepants work for me after many other treatments failed.

migrainetrust.org/live-with-migraine/healthcare/treatments/

I saw a private neurologist for help as I was recommended to see him by my GP due to my unusual migraines. He was brilliant and also prescribed topirimate for me but also propranolol. The combination of both seem to work a treat for me and I have only had the occasional migraine since. That was probably 5 years ago so I've just been taking them on repeat...
It was honestly worth every penny of the consultation fee to see him.

My DS was on topomirate for his epilepsy, a much higher dose, and he was exactly as you were.
I was thankfully prescribed amitriptyline which has helped and doesn't lead to me feeling like a zombie.
I also tried propranolol but my asthma got worse.

Botox for migraines. Research & visit somewhere recommended who specialise in it for migraines and not cosmetic. It's been a total lifesaver for me since I started it over a year ago, the difference I feel is phenomenal.
Had the occasional headache but no migraines. It can be expensive but if you can afford it then its worth trying, im not saying itll work for everyone but I got to the stage I would try anything

I used to have regular severe migraines with significant postdrome. When they happened every ten days or so i was almost constantly trying to get over one before another happened.

Topiramate has worked for me but it did take me a while to get used to it. I found the brain fog and lethargy easier to manage than the migraines. I went on HRT at 46 a few months later and that helped clear the brain fog.

I carry sumitriptan pens with me just in case I have a migraine and they have helped as a preventative too. They stop them developing any further. Would something like that help?

I had some success with Candesartan. It’s a blood pressure drug that can be prescribed for migraines. When I was on it it was a new thing and only prescribed for six months, as a ‘reset’ of sorts. Not sure if that’s still the case. There was a thread about it here a while ago.

Thank you all for the advice.
I wasn’t sure whether the side effects of the topiramate are worse than the migraines, but after having this recent one. I can defintiely see that the side effects are much more preferable to this pain! I’m scared to have another one, they end up lasting around 5 days before I feel back to normal again.

The doctor refused to let me have any more sumatriptan as I was taking them for more than 10 days a month.
I will definitely look into the Botox and go back to my GP to see if he recommends any of the other options that have been suggested!

Another question - has anyone found if certain foods/drinks etc make their migraines worse or what triggers them? I’d really like to find out what starts mine and try to avoid it

For me it's stress, 100%, and they were also hormonal pre menopause.
I did have one after a single glass of red wine once which was highly irritating as I went home for Christmas and my parents thought I was hung over.
My dad and my uncle both get them and I remember my dad staying over in my (quite posh) student residence (Oxford) and throwing up in the hall. I don't think anyone apart from one good friend noticed.

A neurologist/headache specialist is much more capable of helping you with migraines than a GP. They are the ones who can take you through the various options available, and find the solution that works for you.

If you are taking sumatriptan so often that your GP won’t give it to you, you really should be seeing a headache specialist.

Also - now that I’m on the right meds I can eat and drink all the things that used to give me migraines.

I was on topiramate for my hemiplegic migraines a few years back and remember the side effects. I was convinced something worse was going on as my fingers and toes felt like they were vibrating. It did get better though and I’d have taken that over the migraines any day.

I tried modifying my diet, gluten turned out to be a trigger for me. I also had a daith piercing which worked although it may have been a coincidence.

I’m now on no meds at all and can eat gluten again, it turned out the cause was actually my ex and the stress he caused me, once I eliminated him from my life my health improved rapidly.

Hi, OP -

Migraine is miserable and I am so sorry you are a member of our club.

The adjustment to Topiramate you outline leaves me with questions, see below. Topiramate has been brilliant for me with just a mild touch of some of the side effects you mention, but I increased super slowly, and I have always done split dosing (am and pm).

I started T in America where you can get 25 mg tablets. I was on half a 25 mg tablet daily for 2 weeks, then a whole one. Then 25 mg morning and evening. Then I increased by 25 mg every month, later every two weeks, until I reached a very high final dose.

Because it worked so well I have reduced the dose even more slowly and I now take 100 mg morning and evening. Fizzy drinks taste awful and my fingers and toes very occasionally get zaps but the word loss was only an issue for a couple of months when I first got to a high dose.

In the UK our smallest tablet is 50 mg but it can be halved - a pill cutter costs only a few quid. Only neurologists seem to recognise the importance of using divided doses, but it is very sensible once you think about it.

My questions are: How quickly did you increase your dose? What were your starting dose and final dose? Were you taking the full daily dose ar once, or splitting it? Of course, don’t worry if you don’t know! And don’t worry about being exact. I just wonder whether your experience was like mine.

Topiramate may or mat not be for you, but if you haven’t tried working up veerrrry slowly and using split dosing I don’t think you can know yet. The tips I have described for adjusting the dose up and down were from my American and British (NHS) neurologist. I would think that any GP would be happy to discuss them with you.

Best wishes.

How old are you OP? I had debilitating migraines and ended up in hospital as my GP was concerned I’d had a mini stroke. It turned out to be bad migraines caused by the hormone imbalance of perimenopause. I went onto a very low dose HRT and it’s been short of miraculous! From having cluster migraines over 2-week spans to no migraines for months on end.

My DP was given topiramate to try, he developed awful side effects including buzzing hands and feet, poor sleep, brain fog. He then became increasingly aggressive, snappy and irritable, it was like he'd had a total personality change.

He's now back on propanolol awaiting follow up. (His migraines are a side effect of another condition).

I see a neurologist and have Botox every 12 weeks and also take atogepant ever day,

Increasing over a six week period is absolute madness. How do they know if 25mg is enough to work for you if you don't give it a few months? No wonder you felt so bad. I gradually had to go up but had some relief from the smaller doses for several months. I'm now on the max dose and have all your symptoms and couldn't hold down a job with them. You need to see a neurologist. There are much better treatments out there these days that work for alot of people. Unfortunately I'm not one of them.

How old are you OP, are you in perimenopause, are you on HRT? Could you migraines be caused by hormones? If so, treatment options might be different, such as a Mirena coil or progesterone only pill to try and get your hormones balanced.

CRGP medications are meant to be effective - but the NHS doesn’t really offer them. The Migraine Clinic does though.