So I've been on topiramate for almost 3 months now and am at the dose of 100 mg. I suffer from severe migraines to the point I am at risk of losing my job and have taken 2 sick leaves from work a total of almost 2 months time off work to try and " figure out my health problems" which resulted in my neurologist putting me on topiramate. The last 2 years have been hell. But I have suffered from migraines for the past 14 years and I'm 24 now so it's been a long going battle. Can't remember a day I didn't have headache so when I found this drug I thought it was a miracle.
Now that I'm on it though I feel a little foggy and my memory is a little off. Like I haven't fully forgotten anything. Everything has come back to me it just takes a minute for me to grasp what I'm trying to say /remember. Is that normal? I also mush a lot of words together kind of like I'm speaking gibberish at times and kind of seems like I'm slower at responding. I notice it but my boyfriend says he doesn't. It's more frustrating than anything. The doctor did warn me about it and said not to worry about it that it was normal for short term memory loss to occur when taking this medication. Not sure if I'm just over thinking ( I over think a lot)
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Blackedout
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I had those symptoms on topiramate too - it's what is known in medical circles as a 'dirty drug'! But it did help me too, so I stayed on it despite the weird side effects and I totally sympathise as I had awful worries with keeping work and everything going with chronic migraine. It is really bad that you haven't been offered 'Ajovy' or one of the other new drugs specifically designed for migraine prevention, but I guess the doctors have their hands tied and have to give you all the cheaper options first.
I do hope you manage ok on Topiramate for as long as it is effective but do ask about the cgrps when it no longer works for you. We migraine sufferers deserve better!
Yes, AJOVY was approved in England and Wales back in June, 2020 (they agreed in March) and the criteria is:
• the migraine is chronic, that is, 15 or more headache days a month for
more than 3 months with at least 8 of those having features of migraine
• at least 3 preventive drug treatments have failed
So, from September- this should be offered to NHS patients but due to Pandemic I am not sure how it is being recommended. Also, if someone is eligble still they may not get it due to various reasons. I am not sure if this is available in Northern Ireland yet.
Does "Blackedout" live in the UK? If yes then of course there is almost no cost if prescribed through NHS. But the usual price of AJOVY is £5,400 + VAT per year. (£450 + VAT per monthly injection).
No one should ever have any memory loss from a medication. Please so a search on the site for all of the post related to this drug. There are better options for you.
Please look into magnesium ( there are many types- I take Glycinate) i take it 3x a day and it has helped me so much. I also take feverfew, this was recommended by the American Assoc. of medicine. I have started dealing with the sleep issues I had and I am dealing with the back and neck pain. I take injections of Imitrix when I need it. There are ways to manage without Topiramate. For me my memory never came back to normal. I also drink hot peppermint tea and use ice and heat.
Please listen to the Head's up podcast to learn more. They are amazing doctors that have really helped me a lot.
I live in Scotland and I had to try around 8 drugs before moving onto ones where side effects were less unpleasant, this includes topirimate. I found it similar to your description in terms of its effect on me. Whilst it stopped my migraines I put up with it but when sneaky migraine managed to overcome that medication I came off it. I put a lot of symptoms down to potential menopause at the time. I am now on epilim chrono feeling positive though I still have to get to the dose recommended to prevent migraine but meantime it is proving to be effective.
I felt issues I would put down to topirimate almost became larger than my migraine and decided enough was enough.
Hi Julie I believe my migraines are perimenopause. Topiramate made me sad and stopped eatimg. I call it evil medicine. Only taking sumatripton now but I am having four migraine some weeks. Never go more than two days free. Please can I ask is your new medicine working and what is it? Thank you so much
My time line is similar to yours and have been on 100mg for about 2 weeks.I thought everything was going OK and that I could put up with the side effects but this last week. I've had 3 migraines while taking it and the last one was dramatically shorter so I thought it was doing its job.
However, for the past few days the side effects have been unbearable and I felt putting the pills in my mouth was impossible this morning so I just didn't. For the fist time in ages I managed to go about my day with somehwere near normal energy levels.
I booked an appointment with my GP and told him that I wasn't going to take it any more and that I was prepared to just stop as everything I had read about cold turkey side effects were exactly the same as the side effects of actually taking the drug.
I had high hopes but me and Topiramate are not fiends any more.
There has been new evidence about the hmble aspririn - I attach the review. They have often given it to me i nhigh does in hospital in conjunction with triptans and it does seem to do something. In fact this last attack that was shorter, may have bee because of the topiramate or the 1200mg aspirin I took in desparation with the Frovatriptan.
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