Topiramate

I have now been prescribed topiramate to try and prevent my migraines.

I havnt started them yet because I'm just weaning myself off the pizotifen.

When I start the topiramate I am to take 25mg for a week then 50mg

Just wanted to hear of other people's experiences of topiramate please? If it helped and also what side affects you suffered I know everyone is different but I have been suffering very bad on pizotifen with the tiredness dizziness drowsy etc and obviously they didn't help my migraines.

Thank you x

15 Replies

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  • I took Topirimate for about four years. Once I managed to get to a fairly high dosage, I had long stretches almost without migraine: the most relief I've ever known: usually I have migraine about fifteen days a month. My own experience was that Topirimate was pretty disastrous in other respects: my thinking, concentration and memory were very badly affected and I had to stop work (I'm a writer and an editor). It was such a relief not having pain that I carried on regardless until I started having lots of kidney stones and the hospital advised me to stop taking the drug: the kidney stones stopped forming fairly soon afterwards. I've met other people who have had similar experiences: like every migraine treatment except Botox, Topirimate's benefits have to be weighed very shrewdly against the side effects: only you can decide what's worse: the pain or the impact on your personality. My advice would be to try Botox and a radically different diet: the Paleolithic. That's improved things for me a great deal with absolutely no side effects.

  • Hi woodlouse thanks for your reply.

    I will try them first and see how they affect me I'd love to do both but I just couldn't afford it specially right now! I will definately stop taking the topiramate if the side effects out weight the benefits as I would definately not be able to stop working and I do shift work as a carer so it's very important that I am also focused and that it doesn't affect me too much at work I also have to drive to work and sometimes drive my clients around so if it's getting in the way too much I will have to go back to gp and then hopefully she will refer me to a more specialist person. I'll have a look into that diet and the bottom treatment and see if there's a more affordable way for me to consider doing it! Thank you x

  • My Botox treatment is on the NHS. To qualify you must have migraine 15 times a month and have tried at least three kinds of prophylactic, so taking the Topirimate for while may be a necessary step.

  • Oh wow ok that's good to know I have been keeping a migraine chart aswell just so I can keep track and as evidence for Dr's if needed! Yes I will definately try them for a couple of months and see how I go with them.

    Thank you for your help

    X

  • I won't lie: I couldn't get off it quick enough. To begin with I had a vile taste in my mouth, and then I had acid indigestion so bad I started to wonder if I was seriously ill. Upping the dose brought those side effects down a bit, but were then joined by suicidal thoughts that were so 'normal' my GP nearly threw a fit.

    I was put on Zonisamide ('Topiramate-lite') this year to end up with the same problems.

    Neither helped, although I have hemiplegic migraines which can be a bit odd in terms of reacting to treatment.

    I know it's worked wondered for some people. I'd just be very wary of anything like that going on because it crept up on me without me realising until I started crying sitting at my desk!

  • Fn75 I'm so sorry to hear how badly it affected you I have made sure my partner knows of those bad side affects so that even if i don't realise it hopefully he will notice and be able to help me thank you for your feedback it's so helpful to hear different people's experiences on it

    Take care x

  • It made me emotional and anxious even when cut back as far as a quarter every other day.

  • Dear Cupoftea1,

    Thank you so much for bringing Topiramate onto the forum. I've read the replies so far and most seem mainly negative. I'd like to add some more neutral and positive comments from my experience so far.

    I've started taking Topiramate in May 2015, like everyone 25 mg morning - eve and building up per fortnight, but I sometimes waited a bit longer before increasing, taking it easy, ...

    I did feel the expected tingling in the fingers and toes and hands and in my case also in my arms in the beginning and sometimes when upping the dosage.

    TIP: Eating DATES (even just one single date now with my morning porridge), as advised by my migraine specialist, has helped a lot with that - and by now, I hardly ever feel the tingling any more. According to my headache specialist, BANANAS have been reported to help with the tingling too (but I have to be careful as they can give me mouth ulcers, so I didn't really test this tip)

    When my headache specialist warned me that Topiramate might make me 'grumpy', I immediately asked him to support me in asking my GP for councelling support.

    Following that, two months later, I did indeed get referred for five CBT sessions (Cognitive Behavioural Therapy), and I would really recommend this for the extra support.

    Don't ever hesitate to ask your GP for a councelling referral: you're entitled to it (and your friends might be willing to listen, but it's so much nicer to be able to have fun with them, isn't it?) -- and don't hesitate either to ask your headache specialist to mention the risk of Topiramate for your mood and your interest in councelling support, when they are writing their report to your GP -this definitely helped the process in my case.

    Now, 7 months later, I am taking 75mg morning and 75mg evening, which is not that much yet, but it feels ok for the moment: I'm having 8-10 migraines per months, which I can manage with Zomig nasal sprays, and the rest of my headaches feel manageable with paracetamol. So fairly good results in 'my personal headache world'!

    Oh yes, before I forget to mention it, there is also a wonderful positive side-effect for me: since I started taking Topiramate, my appetite has decreased enormously. Ever since I'd been put on my strong painkiller mix nearly four years ago, I'd had constant sugar and carbs cravings and my weight had gone up to 100kg by end 2014! This had made me very sloggish and slow and did not help my joint pain, nor my ME and fibromyalgia... I had managed to get to 95 by May 2015 by eating healthier, but was still having horrible cravings all day long. Then, by June 2015, the Topiramate started really making a difference in helping me 'staying away' from sugary food and drinks and biscuits etc. And suddenly I was also able to feel full on smaller portions, and to stick to two main meals and healthy snacks, so I felt motivated to take up a structured, balanced and calorie counting healthy diet again since end of July (my sister in law recommended using the app 'fatsecret' for tracking). Result: I have since lost three stone and regained unmeasurably more 'lightness'!

    So thumbs up from me for this positive Topiramate side-effect.

    Note: not all side-effects, affect all users... [positively as well as negatively].

    Anyway, I've been reading all the posts here with a lot of interest [and will keep following the post] and am now keeping an even closer eye on my back pain / kidneys so I do thank you, Cupoftea1, very much for posting your question. I've been wanting to put the Topiramate topic out here ever since I started taking it, but just never did it. You did: thank you. I hope my comments may be of some use to you and other 'co-migrainers'.

    Keep smiling!

    A

  • Hi Akeela001

    I'm not actually under a migraine specialist at all at the moment, it's only me and my gp dealing with it currently. I have tried pizotifen before which didn't help but did make me very drowsy poor concentration very tired etc and some other negative side affects. I'm now trying the topiramate which I started last night I will update as and when as to how I'm feeling on them as it will be very useful to others who are starting topiramate.

    If this doesn't work then I think my gp will refer me to a specialist! I don't think there are any where I live so I'd have to travel which is annoying but if topiramate works for me then hopefully I won't have to!

    Thank you so much for you reply it is very helpful I'm really hoping the weightloss side helps me as I'm doing slimming world and have been for over a year and so far iv only managed to lose just over a stone as im sure everyone on here knows how hard it is to diet while suffering with migraines.

    X

  • You are right, there are lots of side effects. Topiramate gave me insomnia and memory loss, never helped the headaches. You may have better success than I. I hope so. Good luck.

  • Have to say one of the first side effects written in the leaflet was about low thoughts and it put me right off! So I never took them and threw them away. However my consultant the centre said he had several patients on them with great results.

    I am now on Propanolol and enjoying the current benefits of having a life!

  • Hi, I took topirimate quite a while ago now but I ended up coming off it as though it had some positive effects I was also suffering from lucid nightmares which disturbed my sleep. I would say see how the benefits work for you though as I know other people who have found it very beneficial but do watch out for any sleep issues.

  • Hi Everyone,

    I am really interested in the comments on Topiramate as my son has been on it for 5 weeks. He has chronic migraine. Unfortunately he has missed so much school that he will have to redo year 11. I think he has been quite down, sleeping 12 hours a day etc. He is on 150mcg at the moment and will go up to 200mcg in the next few weeks. I also noticed lack of interest in food but that has improved now. Very difficult call on medication...we are trying this as he was not happy with the side effects of nortriptyline which he has taken in the past but it did work.

  • I was prescribed Topiramate to prevent migraine and took it for 2 years.

    It worked fantastically - my migraines dropped significantly and the pain intensity reduced too.

    Unfortunately due to side effects I had to come off and was then prescribed Epilim.

    Side effects of Topiramate were dizziness/difficulty recognising numbers/words. I would look at a word eg... .....'book' and have absolutely no idea how to pronounce it. Simple addition was difficult.

    I lost 3 stone in a year (not a bad thing) as I constantly felt full.

    All fizzy drinks tasted bitter.

    Sweet foods tasted super sweet.

    I frequently got lost both while driving and walking. This is in areas I'd known all my life.

    My sentences wouldn't make sense. I'd substitute one word for another..eg......when trying to say 'I've been working on the computer' I'd actually say ...'I've been working on the lawn mower'.... Funny when at home, not so funny when speaking to the boss.

    Oh yes and I permanently felt like jumping off a bridge...

    No joke it seriously altered my personality.

    I wish I could have tolerated it as it did work.

  • Hiya

    Iv been on it probably around 3 months now I think and she first started me off at just 50mg at night and now iv got up to 50mg at night and 50mg in the morning and so far on this higher dose it does seem to be working alot better in the last 3 weeks iv only had around 3 migraines and I have had my daily headaches on top of my migraines either which is lovely

    The worse side affect I'm struggling with so far is extremely bad constipation every now and then to the point I feel so uncomfortable and I have to take laxatives which sometime take a few days to work and iv even considered going to hospital at one point because I felt so painful and uncomfortable and thought u was in trouble with it! X

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