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Coming off Topiramate

(10 Posts)
QueenOfCats Mon 25-Mar-13 21:07:37

Hi all,

I've done a quick search and can find threads about starting Topiramate, but none about coming off of it.

I'm really upset actually with my gp sad

I started on Topiramate for migraine about 5 months ago. I worked out I was loosing a lot of days a month due to migraine, it was affecting my work and I had had enough.

Having tried most painkillers and preventatives I read about Topiramate and asked the gp if I could try it. She looked it up in the BNF and said yes. Prescribed me 25mg to start, said to increase to 50mg after 2 weeks and go back.

Did as I was told, the relief was fantastic! No migraine! No days off work, no days lost lying in bed feeling like my head would burst.

Went upto 50mg, didn't feel too good, so back down to 25mg and that's where I stayed, quite happily. No side effects worth mentioning, no migraines.

Out of the blue, when she saw me in the corridor of the surgery she asked to have a quick word. She then said that due to the possibility of side effects I would need to stop taking the topiramate. She asked me to book an appointment to discuss further.

Anyway, apparently, Topiramate shouldn't be prescribed by 1st line practitioners, only 2nd line. She followed this with "it's safe, it's licenced, but to be extra safe we will take you off of them. I'm leaving in a month. If anything should happen...." And trailed off.

I said fine, ok, you'll have to give me something I case the migraines (that I've had for the last 20 years) come back. She was going to prescribe a triptan but can't due to citalopram. So take 800mg of Ibuprofen when you get a migraine. With Omeprazole because of the citalopram.

So. I've been taking 15mg of topiramate since Friday night. I feel sick as a bloody parrot. Honestly, so nauseous I can't eat and couldn't go to work today.

Spoke to the dr and she said there should be no withdrawal symptoms. Google says different. She prescribed me anti emetics and that's it.

I'm so upset. Why did she prescribe it in the first place if she shouldn't have? Why take me off of it if its working and I have no side effects?

Sorry for the long winded post but I'm not a happy girl confused

KenDoddsDadsDog Mon 25-Mar-13 21:57:41

That's so odd. My GP has given me Topiramate, have been on it for a long time as well and it has really helped.
Feel sorry for you as I know the relief of something that helps.

QueenOfCats Mon 25-Mar-13 23:20:46

Thanks Ken - yes it's strange alright.

I'm so disappointed that I have to stop taking it because I really felt it improved my migraines. I've had 2 since I started taking the tablets compared to 2 a week before.

Would I be unreasonable to seek a second opinion from another Gp at the practice?

narmada Mon 25-Mar-13 23:37:43

Yes, of course it would. Go for it. It sounds as if the current GP is trying to cover her back and behaving a bit oddly.

These things are all about a balance of risks aren't they? For you this drug may be well worth the risk of any side effects. I hope you get some joy, it sounds grim.

KenDoddsDadsDog Tue 26-Mar-13 07:19:51

Or you could ask for a neurology referral ?

FarelyKnuts Tue 26-Mar-13 07:24:55

I would be asking for a 2nd opinion or a neurological referral as suggested. I have been on this for 3 years now with no problem at 100mg pd and neurologist says if its working for migraine he sees no issue with continuing.

jasperc163 Tue 26-Mar-13 10:04:41

QueenofCats - can't help i'm afraid as I have just started amitriptyline for chronic migraine/headaches (constant at the moment) but interested as Topiramate is what i will be put on next if this doesn't work. Did you have any side effects when you started it and how quickly did it work for you? many thanks and hope you can get someone to put you back on it if that is what is needed.

KenDoddsDadsDog Tue 26-Mar-13 20:43:31

I have had no side effects - only a little loss of appetite to start with.

landofsoapandglory Tue 26-Mar-13 21:14:59

I would be seeking a second opinion too.

I take Topiramate, 50mg in the morning and 100mg at night, for Migraine prevention. Mine was prescribed by my GP. At first it was great,but my Migraines have got worse again, hence why they keep upping the dose, I was meant to take 100 bd but it upset my stomach.

I get about 15 migraines on a bad month, 8-10 on a good one so am seeing a neurologist next week.

QueenOfCats Wed 27-Mar-13 00:21:47

Thanks for all the advice - much appreciated smile

I'm thinking that I will call the surgery first thing and request a telephone consultation with the main Dr. He can be a bit of a twat and has zero bedside manner, but I know that he will be straight with me and look into what's happened.

Will also ask for a neurology referral.

Feeling less queasy today thank God.

To the poster above who is thinking of going on topiramate, I found it really helped, had minimal side effects and was very happy taking it. The only side effects i had were shortlived, maybe a week or so and were slight tingling in hands and feet, loss of sensation or carbonation on my tongue and slight fumbling for words at times. Good luck if you decide to give it a go smile

Thanks again all thanks

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