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Anyone used Topiramate for migraine?

(10 Posts)
DoItTooJulia Fri 03-Feb-17 19:26:53

I had a thread a while ago about a strange arm pain thing I was getting-wondering if it was carpal tunnel related.

After nerve conduction studies showed mild carpal tunnel and didn't seem to explain the symptoms, my GP referred me to a neurologist.

I saw the neurologist today who says I have a type of migraine and is prescribing topiramate, so obviously I thought I'd come here and see if anyone has any experience?

I can give more details if it helps, just thought I'd see if I got any responses before I typed out a huge op!


wfrances Fri 03-Feb-17 20:19:46

ds 13 was prescribed these by neuro when he was 10
he has to take 1 at night , they make him sleepy.
he has to make sure he keeps hydrated as it can cause a problem with the urine /kidneys.
they do work.
his symptoms were severe , vision loss , paralysis and vomiting in his sleep.
have you tried them yet?

Chaotica Fri 03-Feb-17 20:50:21

I was offered it for MS-like migraine symptoms. But I was then warned that it may affect my ability to do my job, so I didn't take it. I'd rather live with the strange neurological symptoms.

Nearlyhadenough Fri 03-Feb-17 21:13:45

Been taking a very small dose (25mg) for about 2/3 years - and they have transformed my life!

I was having migraines with aura lasting 2/3 days, 4/5 times a month. The aura is the worst part for me - I have been taken to A&E as people think I am having a stoke - tingling toes and hands, numbness down half my face, missing parts of my vision, not being able to speak or write coherently.

The initial side effects were not nice - more tingling in toes/fingers, memory loss, tiredness - which worsened as I increased the dose, which is why I have stayed on a low amount. But it was worth it as I now rarely have a full blown episode.

Obviously it may not just be Topiramate that is working for me, but I have not made any other life style changes.

lougle Fri 03-Feb-17 21:17:49

I take them. I was worried about side effects because I need to be clear minded to do my job, so I started very gradually. I built up to 50mg twice daily, with no side effects. I've just seen the neurologist and he's recommend going up again so I'm on 75mg twice daily now, and I'm going to go up to 100mg at night, 75mg in the morning soon, then build up slowly.

TheClaws Fri 03-Feb-17 22:08:16

I have 100mg of Topamax nightly due to its drowsiness effect. I did build up very gradually to this dose as I was concerned about the other side effects. I haven't really noticed a huge lessening of migraine activity, but who knows? I'm a bit scared to go off it now just in case.

bear28 Fri 03-Feb-17 22:27:43

I went to neurologist a year ago for severe migraines which i was actually getting morphine for because i was so sensitive to other medications. (I suffered from headaches/migranes every day for 6 years and tried almost everything).

Anyways, the neurologist diagnosed me with migraines and tension headaches and put me on Topiramate (for the long term headaches) and Almotriptan (for immediate migraine relief when i felt them coming on)

They advise to not take topiramate if you are considering planning a family as it can cause disabilities/complications to the foetus. I took topiramate for over 6 months and found my migraines/headaches subsided and came off it gradually (as my partner and I plan to start a family and I didn't want to risk it). Now i take the almotriptan once or twice a month when i feel a migraine coming on. From going from suffering with migraines for every day for so long to only needing a tablet a couple of times a month is such a relief. I don't know if it came down to stress or anything but my scans didn't bring up anything bad.

For the relief I felt I would definitely recommend it but it comes down to you and how your body will react to it. Not everyone is the same.

The only downside for me was I gained 2 stone in 3 months whilst on it (still trying to get it off!!) . It is a side effect but I think only 5-10% of people get it. Just depends on you. Hope it all goes well for you OP.

lyrebird1 Fri 03-Feb-17 22:57:08

I have been taking Topiramate since July for chronic migraines. I was having severe migraines every day with visual disturbances, and was really struggling at work. A private neurologist (9 month wait on the NHS!) prescribed me with Topiramate and I started with a low dose initially, but am now taking 100mg twice a day.

I have found it to be very effective and have had very few side effects - some pins and needles in my hands and feet, increased thirst and dry mouth. Unlike the previous poster, I have lost weight (hooray!). My appetite has decreased, and strangely, for the first time in my life, if there is a plate of biscuits, I can just take one - I have never had that kind of self control around food before!

I have had a few migraines since - 3 I think, but I have also been diagnosed with another rare neurological condition and had a couple of operations, so each migraine was either after surgery, or after coming off high dose steroids.

TheFairyCaravan Fri 03-Feb-17 23:01:52

I've been taking it for a few years. I take 50 in the morning and 100 at night. They wanted me to take 200 a day but it made me too sleepy to function.

I still get migraines but they are less severe than before.

DoItTooJulia Sat 04-Feb-17 09:02:01

Thanks all-interesting to hear that most of you got over the initial side effects.

I haven't been given the prescription yet-my GP will prescribe it and monitor me.

It was so interesting because I get bouts of labyrinthitis and the neurologist said that it's all part of the migraine picture, along with the strange arm pain and visual disturbances (which I figured was migraine but the aura is a fairly new thing) but I hadn't connected them all up at all, especially since the headaches aren't such a prominent feature any more.

I'm also going for a brain MRI.

I bloody love MN-it's great to hear how actual people get on with it. Thanks again.

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