Topiramax for migraines

[Shaynec]

Has anyone used or tried the anti convulsant called topiramax for recurrent migraine?? Thanks cheryl

[designer111]

HI.

I got it on prescription, saw the side effects that were quite severe i.e. very low thoughts and actions and I decided there and then not to use it! It scared me. The doc at the centre said that some of his patients swear by it but admitted there was a risk. I think in all honesty it perhaps only has those side effects if you are naturally inclined.

I was given Propanolol a week ago which is a beta blocker and today I can see it has already worked. I have had migraines/headaches for the past 7weeks at the beginning of the week and it has not happened this week.

But that drug, the same as topiramax and any other drug, have side effects to the body in any case.

But my life was being blighted and I decided to put the drugs in my body rather than not to have some relief for a while.

Hope that helps.

[Claudie4]

I use topomax, wonder if it's the same thing. I used to serve on the Board of Directors of the Epilepsy Association

Many neurologists were of the opinion that there may be a strong connection. Ask your Dr. what the results should be from taking that pill.

[LK1123]

Been on it for almost 2 years. Topiramax is the generic for Topamax. It was a major life changer for me. I went from having 11 major migraine days in a span of two weeks down to one or two a month if any some months. My migraines have now developed into a hemiplegic variant (not due to meds) so we have increased my dosage significantly along with other treatment. I will say it made soda pop taste funny in the beginning and I heard it will beer as well but that doesn't last, it also can make your fingers and feet tingly like they fall asleep, worse side effects are kidney stones. Also does aid in weight loss and to quit smoking for somee.

I contribute much success to eliminating my migraines originally due to Topiramax.. the level of mine now it seems nothing is working.

[Stace79]

Hi I am on topiramate high dose with any drug it's 50/50 on the side affects if your doc is good they will know what to do to help yeah the side affects can be really unpleasant but do subside a lot but one or two stay around but if it controls your pain then it's up to you what you can deal with hope this sort of helps but remember every one is different 😊

[babs1234]

I haven't myself but know someone who suffered very intense migraine, was prescribed an anti convulsants. Not sure what the name of them where but they definitely worked for him

[charlie1001]

I know some people have great success with topiramate. Effective treatment/medication is very specific to each individual. I had no side effects whilst on a low dosage but when it was increased to combat the persistent migraines I experienced extreme nausea and weight loss. I lost about half a stone in 2 weeks. After coming off topiramate I had to plan meal times and remind myself to eat, it took a couple months before I felt hungry again. I wouldn't discourage anyone from trying it, especially if the migraines have been unresponsive to other treatment - it's all about finding the best treatment specifically for you

[Nickers1 in reply to charlie1001]

Totally agree with the weight loss thing. I lost 2 stone in the first year of taking this tablet, but fortunately it did (does) work for me.

[Tor666]

I am on Topamax and have been since 2012. My doctor specifies Topamax on my prescription as I found that i had more side effects with the generic brands. I did get quite a few side effects such as; an addiction to water, where I was drinking it constantly and was consuming about 6-7lts a day. That wasn't such a bad thing because as someone said above they can cause kidney stones but only if you don't drink enough fluid. I drink a normal amount of water now and i have never had kidney stones.

I used to be addicted to pepsi until i started taking them too but all carbonated drinks tasted awful and you have an inability to taste fizz so i just stuck to water. My thought process got mixed up for a while (almost put Ribena in the washing machine in stead of fabric softener) and i did get the tingling in my hands and feet but that went after a few months. The biggest side effect was that i lost 2 and a half stone. I am 5 foot 9 and i dropped to 9 stone 6 in about 3 months.

As for helping control migraines, it really does help, without it i would have at least 4-5 a week. within a few weeks of taking topamax they had dropped to a few a month and when i did get a breakthrough one i could get rid of it with a triptan.

I would say give them a go, if you cannot cope with the side effects stop taking them, what do you have to lose. I can promise you that no side effect will be worse than what you have to deal with already.

Victoria Xx

[Peaches_7]

My husband was on it for migraines but had most of the bad side effects. I would try it and if it works for you then awesome but if not try something else. I suffer from severe daily migraines and take midrin which takes 45 minutes to work and norco which masks the pain and zanaflex which I don't think does anything. I am breastfeeding my son so I am limited on what I can take but as soon as he's weaned we ate going to discuss a more aggressive approach.

I am also bipolar and on anti epileptic meds as a mood stabilizer and anxiety meds as well as anti depressant. Who knows maybe all the meds cause them.

[blinc]

Hi, I have found topiramate extremely helpful in keeping my migraines 'under control'. Before taking this drug, there was a point where I was having one migraine every 3 days (I have been keeping an accurate migraine diary for over 6 years). I was initially put on 50mg per day for one year. This is a low dose. The improvement was immediate. Side effects were purely tingling in my toes and fingers, especially after/during exercise (dog walking), and sometimes in my lips (a little odd, but absolutely NOTHING to compare to having a migraine!)...this side effect dimished over a few months. After about a year, I realised the headaches were gradually creeping back. My Dr and I agreed to increase the dose to 75mg per day (25mg am, 50mg pm) - an immediate improvement seen. Again after a year, the symptoms started to creep back. 6 weeks ago, my Dr increased the dose to 100mg per day (50mg am & pm), and I have had just ONE migraine last week!!! In a nutshell, I have personally found this drug a 'life changer and saver'. In years gone by, my doctor has tried me on other medication which has not worked for me. I have also lately been trying to follow an incredibly healthy lifestyle...I have learned a lot from my vegan teenage daughter (who I thought was faddy and extreme): she has opened my eyes to a new world as well - I have eaten very little dairy, & tonnes of fruit, veg, pulses, grains, hemp oil (!!), rice, almond milk...(it helps that she's happy to do the cooking!) I think this has all helped greatly too, but I cannot dismiss topiramate - I do think it is a combination of factors, also I try and keep my neck aligned and shoulders not hunched. I agree with all the comments - everyone is different, but topiramate has certainly worked for me. I don't think it made me foggy-brained (no more than usual!). Good luck!

[Shaynec]

Thank you for all your replies,my son is disabled and suffers migraines,he has tried propanolol but had no benifits and made him very tired all the time,he is on pizotifen which the consultant admits is not a good preventive, the trouble is he can't tell me if he is feeling ill so we have to guess as to what it is and what to give him,we know he has pain and vomits and sleeps for 48 hours sometimes I between vomiting and in obvious pain so it's being treated as migraine,he has lost so much weight from constantly vomiting so I'm worried now after reading of how many of you had weight lose among other horrible side effects,I won't know if he is having side effects as he can't tell me. But he also has no quality of life if we can't find something that works,it's like having two choices and both of them are rubbish ! But I suppose unless we try it we won't know .

[Tor666 in reply to Shaynec]

Hello Again,

I think we all suffered the weight loss because of our lack of appetite. As your son is disabled you could keep him on high calorie shakes etc when he starts taking topamax to counteract his appetite suppression. Hopefully he will no longer be vomiting as the migraines will be controlled. I too had tried pizotifen and propanolol; the first did nothing and the second only worked on a really high dose which made it difficult for me to function.

There is a huge list of side effects and I was really scared when I opened the first packet I got, but I actually could't function without Topamax.

Whatever you decide, it will be the right thing for your son

Victoria x

[Nickers1]

I've been taking Topiramate (100mg) for about 3 years now for what were, chronic daily migraines. At first I did have a few side effects, tingling feet and hands, weird blurred/double vision in the dark - that one was random and I lost about 2 stone in a quite short period of time cos I just wasn't hungry. The weight loss tapered off though.

But the tablets cured my aura. I never get aura's now.

Our house is quite the Topiramate advocate, my husband also takes it to keep his epilepsy under control. Phoning up for repeat prescriptions is quite amusing.

I also have botox for my migraines which I would highly recommend if you can get it! Made such a difference to my quality of life.

Good luck!

x Nic

[ahayton83]

Hi yes I'm on topiromate and it's pretty much stopped my migraines 😀 has done for a year now, but be warned don't get pregnant on it xx

[SouthFloridaLady]

I have been taking topiromate for many, many years, and am up to 300 mg. I refer to Topamax as dopamax! My major migraines have stopped, however, I still get severe headaches and minor migraines. I use Firocet for that, and consider that my lifesaver! We have to keep plugging along because everyone will have a different drug that will help them. ♥

[herbmonster]

I am on toprimax. I take 50mg in a morning and on a night. Was prescribed it after though not conclusively linked but chronic migraines being diagnosed after having VM 12 months ago along with other complications.

It was started gradually and have to say the side effects are not nice but they outweigh the chronic migraines so it is the lesser of the two evils so to speak. I suffer the side effects of pins and needles, can not abide fizzy drinks or certain foods now, and the weight loss has been huge because my appetite has been effected greatly. It's wierd as have to say some days I experience what I can only describe as a migraine but without the migraine which is wierd.

I have to say without it I would not be able to work and at the moment I am coping with the side effects better than the migraines. But unfortunately the side effects balance now it tipping to be unbearable as the weight loss and lack of appetite is not good for my diabetes ( a condition I was left with after being seriously ill from the VM and the infections I had 12 months ago as my body basically was shutting down).

As it stands I am keeping it as it is but I am being monitored closely.

[Ghost2345]

We are all different so give it a go. I didn't stick with it because I couldn't function well enough in my demanding job. I was really looking forward to the weight loss!

[LarryD]

I have daily migraines and the Detroit VA tried me on topomax and when I had emotional reactions they had be cut down to 1/2 a pill and later a 1/4 of a pill and then every other day. I was crying at TV shows so I went to an outside Neurologist.

[Sahara3]

I have used topiramax, and it did work to start with. The worst side effects were total loss of appetite (I really did not want to eat, so lost a lot of weight - too much in fact) and anxiety attacks (I had never had these before and even though I knew they were completely irrational, I was vomiting with the anxiety - not pleasant). After about 8 months they stopped preventing the migraines. With the side effects I had I could not face an increased dose so I stopped taking them. Since then, I have spoken to someone who took them in combination with Half-Inderal (beta blockers) and they found them quite successful as a preventative, without too many side effects. I have gone back to amitriptyline, which works in a limited way but with only a dry mouth as a noticeable side effect.

Preventatives can be effective but it seems to me it is always a question of balancing the side effects and the effectiveness of the drug to find the best quality of life and being able to function day to day, and you can only do that by trying things out to see if they suit you.

Sorry that's a bit of a wishy-washy answer but everyone is so different in the presentation and cause of migraines that every drug works differently for each person.