Topiramate - tell me the side effects get better!

[CaptainCanary]

Started topiramate for migraine over Easter and I feel like absolute 💩

Only on 25mg but currently so much worse than beforehand. Zombie tired, reaching for words I can't quite find, headaches not my 'usual' migraine but a more severe type of 'other' pain, no appetite, and this morning I felt like I might pass out in the middle of Asda. I know the first few weeks can be the hardest and I'm hoping it will pay off in the long run but struggling to stick with it at the moment and there seems to be no end of people online with horror stories to share. Review due with GP at the end of the month.

Please, someone tell me it'll be worth it in the end!

I also begged to come of it after a suicide attempt I knew it was from that they took me off it and I was completely fine after. Like I said I don't normally like to slag of meds but this one should be banned

I was incredibly disappointed not to get the weight loss side effect.

OP don't be too disappointed if it doesn't suit you there are many many migraine meds and if enough don't suit you then finally you get to neurology.

I wasn't even aware there was a National Migraine Centre so will definitely look into that, thank you!

@AreThereSomewhereIslands I work in customer service so I'll have to make sure I'm not TOO honest when someone next asks a silly question

Did any of you find you had freezing hands and feet too? I had to layer my dressing gown over the duvet last night to get my feet warm enough to actually be able to fall asleep

Thank you everyone for replying, the support is very appreciated

Hi, OP -

I am sorry about the problems you and others have had with topiramate.

It has worked well for me, cutting my migraines back by well over 90%. I take 100 mg twice a day.

I also started on 25 mg once a day and moved up very slowly. I went through periods of word loss, which still happens occasionally. I also get tingling fingers probably once or twice a month on average. Also, yes, my taste for champagne is ruined! My weight has not been affected.

I love the stuff but I know it is the Marmite of migraine meds. FWIW I’ve heard excellent things about the National Migraine Centre. It seems to me that you should be under the care of a neurologist (as I was for many years) so perhaps a self referral there is one way to accomplish this.

I checked; am on half a 25mg tablet. I got the suicidal thoughts too, for a very defined time period. Now I know that if the tablets are stopped for any reason, when restarting them I just have to get through that period.

It did surprise me to see on the leaflet I was given that a side effect of taking it is suicide. Not even 'suicidal thoughts' but 'suicide'. Well, I suppose the problem you're taking it for would no longer be relevant, but ...

I was prescribed it years ago for BPD by a psychiatrist who had spent all of ten minutes with me. I now know of course that not only is there no medication for BPD, but that I'm actually autistic....but that's by the by

This drug robbed me of months of my life, I couldn't function, couldn't think, couldn't speak.... I tried to work initially but then would end up embarrassed every day because of the brain fog and lack of finding the right words. I only stopped when the doctors became increasingly concerned about how little I weighed as I pretty much stopped eating while taking it.

Another few near-faint episodes and I had to get a phone consultation with the GP and ask to stop...half dose for the weekend then they're planning to retry amitriptyline but with a better titration plan (for whatever reason nobody wanted to go above 20mg last time, GP I spoke to yesterday was very confused by that and is writing a plan ready to start when I have my face to face appt next week!)
Feeling very deflated today and a bit like I'm back at square one😔

How many preventatives have you tried now? Why are they so fixated on these?

I had to bin amitryptiline because of the sedating effects - I was a police officer at the time and I couldn't function.

https://cks.nice.org.uk/topics/migraine/management/adults/#preventive-treatment

Have a read of the options. If you've been through three and they have failed, ask for a referral to neurology to see a headache specialist.

I had to bin amitryptiline because of the sedating effects - I was a police officer at the time and I couldn't function

It’s all so individual. I found it great. BUT I swapped to afternoon shift while titrating and took it a certain time before finishing. Then swapped jobs for day shift with it while taking it of an evening as standard. Wouldn’t be without it.

The only options they've offered have been amitriptyline, then propranolol or candesartan (I already have low BP - around 83/56 so neither suitable) and topiramate.

I think one of the biggest problems is that over 8 appointments since this all started, I've seen 7 different doctors at the surgery so absolutely no continuity of care. Everyone has their own ideas and nobody follows up with what the person before has started. When I'm well, or have time to sit and think properly, I can see all the problems and things I want to say but when I'm sitting there on a bad day and the room is tilting, the lights hurt and there's been a baby crying in the waiting room for the last half hour my brain is just frazzled. You can request a 'preferred clinician' when booking which I always do (one of them has been fab at referring for MRI and trying to push for neurology involvement) but I've only actually managed to get him twice...I did say to on the phone that I would like to see that particular GP next week if at all possible so we'll see.

I was on major crime so 08-16 daily plus on call for 7 days a month etc and had an arsehole DS who wouldn't consider any adjustments. Long story but I quit in the end. That helped my migraines for a bit as well 😂

I couldn't stay awake on amitriptyline. It tells you to take it at bedtime. Fine. But I was falling asleep at 7pm at ukulele practice after taking it at 9 the previous evening

I'm now on pitzotofin. I get the odd issues with sleeping but not that bad

It was dreadful for me, sorry. I titrated up very slowly but didn't even get to half the dose the neurologist wanted me on. I felt utterly weird and dreadful, couldn't find words (bit of a drawback as a proofreader and editor!), and couldn't make decisions - my DH once lost me while out shopping in a tiny M&S food hall and found me sitting on the floor a few aisles away, close to tears because our normal washing capsules were out of stock and I couldn't decide which ones to buy instead 😳. The neurologist took me straight off it at my next appointment. It is second only to Pizotifen (which turned me into a raging angry monster with terrifyingly violent nightmares) in the list of horrible migraine drugs I've tried. I am now on Nortriptyline, Pregabalin, and monthly Erenumab injections - touch wood, this is the best combination I've tried.

I was on 200mg a day which really sorted my migraines but my hair started to fall out. Neuro switched me to atogepant which isn’t as good but no side effects

Those side effects sound really rough, hoping it gets easier for you. Have you ever tried cold therapy alongside medication? I know a few people who've used it as a drug-free alternative when the side effects got too much. Genuinely curious whether your GP mentioned any non-medication options?

One thing I've recently noticed again that the brand really makes a difference. I have had to go back on the original brand (topamax) as the other was simply not much good (aurobindo; when I looked it up, apparently it has a lot of quality control issues)

I didn't expect new-ish posts on this thread but have a little update...GP stopped topiramate and put me back onto Amitriptyline 2 weeks ago. No side effects apart from weird dreams when I took it from October-March. But today ended up being sent to A&E after my heartrate was spiking into the 130s at rest. Normal ECG and bloods so sent back home and the only thing they suspect is the amitriptyline, so likely going to need another med change 😭 Truly wish I had never tried to swap meds the first time, I have been so much worse over the last month-6 weeks...

I hope you find something that helps you xx

Ugh I'm so sorry - and every time the meds switch it takes so long as well to taper up and taper down...

Have you considered investigating the anti-CGRP medications and whether those could work for you? I have been on these boards saying good things about the National Migraine Centre but they have helped quite a few people I know get access to mAbs and gepants.

I've seen a few people say they've had success with CGRPs but the initial cost is holding me back a bit 😬 I need to ask GP what the procedure is if I were to trial them via access from the migraine centre, would NHS take over if they were proven to be beneficial? Neurology still seem very uninterested so unlikely to get anywhere fast on an NHS pathway

And to make matters worse the lovely GP I mentioned earlier in the thread is leaving the practice soon 😭 I honestly could have cried when he mentioned it!

I'm on a cgrp from neurology - it is available on the nhs.
I went through 15+ meds, then botox did work for a few years before it became ineffective. Cgrp has been a lifesaver for me and i'm 95% migraine free 3 years into treatment.

I'm also on a CGRP through an NHS Neurologist.

The Migraine Centre gets recommended a lot, and I am sure they are brilliant, but the cost of my CGRP was just not feasible for me every year, for years.

It was actually much quicker to see the NHS neurologist than I thought, I'd failed 2 meds, not suitable for 3 more so neurologist offered the CGRP on my first visit. You have to keep going back to your GP to work your way through the migraine pathway.

Would not be something a GP can prescribe, the neurologist had to fill out a load of paperwork for it and it gets delivered to my house once a month.

I got my gp to prescribe remegepant but I didn’t find it helped at all