Topiramate as preventative: Hi... - Migraine Support

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Topiramate as preventative

webbs8 profile image
webbs8
โ€ข29 Replies

Hi everyoneHaving so many headaches lately so feel like need to try preventative. So wondered if many people tried these and with what results

Thanks

Leigh

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29 Replies
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Hi there, I suffer from chronic migraines. I have tried numerous preventatives, sorry to say none have worked for me. I am taking Topiramate at the moment 100mg morning and evening, also about to have my 3rd Botox treatment. All to no avail I'm afraid. That is me. I hope there is someone else on here that can give you some more encouraging information. Best wishes x

webbs8 profile image
webbs8โ€ข in reply toPippa-Dippa-Doo23

Thanks for your reply and sorry to hear nothing helping you so far. Let's just hope there will still be something that helps for you one day x

justmyluck profile image
justmyluckโ€ข in reply toPippa-Dippa-Doo23

Hi fellow migraine sufferers, I find that taking magnesium every night helps to reduce the amount of migraines and even helps cure them. What can you lose, try it right?

webbs8 profile image
webbs8โ€ข in reply tojustmyluck

Sounds like a no brainer to try! How much do you takeThanks

Leigh

justmyluck profile image
justmyluckโ€ข in reply towebbs8

500 mg. You can start with 200 or 500 right away.

webbs8 profile image
webbs8โ€ข in reply tojustmyluck

Ok great thanks

justmyluck profile image
justmyluckโ€ข in reply towebbs8

๐Ÿ‘๐Ÿ™

webbs8 profile image
webbs8โ€ข in reply tojustmyluck

Ordered it so fingers crossed and will let you know x

justmyluck profile image
justmyluckโ€ข in reply towebbs8

cool ๐Ÿ˜Ž

Pippa-Dippa-Doo23 profile image
Pippa-Dippa-Doo23โ€ข in reply tojustmyluck

Many thanks, unfortunately I cannot take Magnesium, it has a bad affect on my stomach, even at the lowest dose. I appreciate you trying to help me, x

justmyluck profile image
justmyluckโ€ข in reply toPippa-Dippa-Doo23

I tried honey xx

Onthemove1971 profile image
Onthemove1971โ€ข in reply toPippa-Dippa-Doo23

What about feverfew or butterbur?

Pippa-Dippa-Doo23 profile image
Pippa-Dippa-Doo23โ€ข in reply toOnthemove1971

They didn't have any affect. Thank you for your offer of help, x

Beer_Elf profile image
Beer_Elfโ€ข in reply toPippa-Dippa-Doo23

Have you tried Vitamin B2? I take 200mg morning and evening, it's reducing frequency and length of each attack. A work colleague of mine can't take Magnesium either, but she finds B2 helps.

Pippa-Dippa-Doo23 profile image
Pippa-Dippa-Doo23โ€ข in reply toBeer_Elf

Absolutely worth a try. Many thanks. X

blue-green-purple profile image
blue-green-purpleโ€ข in reply toPippa-Dippa-Doo23

Hi Pippa, I was getting 18 migraines a month and had to go on disability. I stayed with Botox treatments for 1 and 1/2 YEARS and finally got the number down to 9 per month. It was my only option at the time so I just kept going. Everyone is different but eventually I did get some relief. Just can't seem to get below 9 a month which is very frustrating! Good luck to you.

Onthemove1971 profile image
Onthemove1971

One of the side effects to this medication is memory loss. I took this am and pm and started to notice I could not even remember my passwords, so I quickly tapered off.

What has worked for me is high doses of magnesium glycinate . I take it 3x a day 400mg.. for me it only works at a high dose. I also take Feverfew, which is recommended by the American Academy of Medicine. Many studies show adults that get migraines are low.in magnesium.

Since I wake up with migraines in the am it has been shown I have sleep issues.

I use ice on my neck, never skip a meal, take medication as soon as I feel head pain. I use roll on peppermint oil.

The other thing I introduced was injectable Triptan so when the pain gets really bad I can stop it. I use these maybe 2-3 x a year.

Hope this helps, balancing life, work and having a child really has an impact on my migraines.

Hope this helps..

webbs8 profile image
webbs8โ€ข in reply toOnthemove1971

Thanks for the reply and all the run down of your situation and what you take etc. Whoa even forgetting passwords! That must of been scary and not sure i would want to chance that happening. Thats interesting about the magnesium. I had tried feverfew years ago without any luck and the injectable Triptan didn't work for me either. When I've had to go to bed with one, a cold wet flannel or ice cubes in food bag under flannel is my saviour. Might try the peppermint oil. Yes I know what you mean about how lifestyle can affect them sometimes too. Thanks again x

Onthemove1971 profile image
Onthemove1971โ€ข in reply towebbs8

I just also want to add. I believe that dose of medication is vital.. for me 100mg works best, that is double the amount. Coule you try high dose of the injection? Also, the Tristan could be increased. For me the Feverfew works when I take it 2x daily only.

For me magnesium citrate did not work but Magnisium glycinate only at 400mg 3x daily, but a lower dose did not help.

Also, the podcast Heads-up is wonderful to help with learning ways to learn what works best for me.

Best of luck!

Gillyflower18 profile image
Gillyflower18โ€ข in reply toOnthemove1971

have you had a sleep study? I had nasty headaches every morning like you. Turns out I had sleep apnea. With Cpap I rarely have them anymore.

webbs8 profile image
webbs8โ€ข in reply toGillyflower18

Wow that sounds interesting. How do you have sleep study and what is cpap? X

Gillyflower18 profile image
Gillyflower18โ€ข in reply towebbs8

I went to a sleep clinic attached to a local hospital and they set up the study. Cpap is a machine you were at night to help you breathe properly. Mine is very small and quiet. The test showed I was partially awakening from blocked breathing over 30 times an hour. You donโ€™t even know itโ€™s happening youโ€™re just stressed and tired out all the time. Morning headaches is one of the main symptoms along with getting up a lot at night. Hope that helps you.

webbs8 profile image
webbs8โ€ข in reply toGillyflower18

Thats so interesting and wow to all that that could be happening and you don't even know! Did you just find out about the sleep clinic yourself or did they arrange it through your doctors or was it a private thing you paid for x

Gillyflower18 profile image
Gillyflower18โ€ข in reply towebbs8

I had suspected it for a while. I contacted them directly after researching providers in my area. My insurance does not require a referral.

butlertammy profile image
butlertammy

I was on it for a year, and similar to others, found my memory got a lot worseโ€ฆ I felt like a 46 year old going on 86! I also gained a lot of weight over that year and my fibromyalgia got worse.

I decided to take a shot and tier off itโ€ฆ ever since my memory came back (no longer living in a permanent brain fog) and I started losing weight (without dieting). My migraines are the same but Iโ€™m defo not going back on topiramate!

webbs8 profile image
webbs8โ€ข in reply tobutlertammy

Whoa that didn't sound good for you either! Since I was going to try magnesium, in the meantime one of my sons has started doing treatment to release suppressed negative emotions which I believe prob pays fair part in things alot of us get so will keep you all informed how it goes ๐Ÿคž so far my morning anxiety has gone and only had 1 slight headache in past 2 weeks ๐Ÿ™ x

Cb1963 profile image
Cb1963

I'm a bit late to the party here, but after suffering with cluster headaches ๐Ÿ˜ซ which are apparently the worst pain known to mankind I've been on long term topiramate the highest dose 2 x 50mg tablets daily twice a day,and I've been on them for 3 years, however my headaches have come back with a vengeance, I have just been prescribed a self injecting pen, sumaprtian from the headache clinic, but I was taken in at the clinic for a nerve block injection in the base of my neck, unfortunately this hasn't worked, and I'm currently relying on these self injecting pens to try and stop a full blown cluster headache, however these can cause a rebound headache, I'm now waiting on oxygen therapy which is just a bottle of oxygen to place a mask over my face when the onset of a headache occurs, unfortunately unless you get a definite diagnosis you can end up trying various medications, at the beginning my doctor started me on propananol, it was only after seeing a neurologist that my condition was confirmed, and there's many types of headaches, migraines etc, and trying to get a tablet that suits your needs could be like looking for a needle in a haystack, I hope you've found a cure by now , best of luck ๐Ÿ˜€

webbs8 profile image
webbs8โ€ข in reply toCb1963

Whoa all what you have tried. Your message reminded me to come on here to share my amazing news. So I've had migraines for nearly 50 years and tried fair few things over the years as we all do. Well 1 of my sons who is very spiritual researched and started doing the Emotion code and asked if I wanted to try it for my headaches. 4 months on its been unbelievable and it def cleared something as hardly get any at all now. It is having negative emotions released that can cause lots of things, we all have them and you literally don't have to do anything, just sit there. I know a lot of people might boo hoo it and fair enough but lucky us who believe and get the relief ๐Ÿ‘ he's now working on my chrons ๐Ÿคž x

Tree20862 profile image
Tree20862

Topiramate worked great for me, when I first started on it in 2021. Now it is not working anymore. I don't know what changed.

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