New migraine meds

[Ronniebongo]

my neurologist has recommended topiramate for my migraines, some of the reviews are awful so I’m wary 🥴 been on beta blockers for many years but my migraines have evolved now I believe after menopause to awful vomiting and front of head pain.. anyone suffered similar ? I know everyone is different so not sure which new meds to try . 😳

[Onthemove1971]

Sorry this medication is not for migraines. I had horrible permanent memory loss from this medication. Can you ask about monthly injectable medication? Amjoy, Aimovig? These are in a class called CGRP and the sole purpose is to stop migraines they are life changing!

I do not recommend topiramate! Best to you.

You could also listen to the Heads Up podcast, they are migraine specialist to have great advice.

[Cat00]

I took Topirimate, it had no effect on me positive or negative.

[Roonie22]

I’m 54, and the menopause has turbocharged my migraines too! For many years atenolol and amitriptyline worked for me, but no longer. I’ve tried lots of preventative medications, and like you, have not wanted to try Topiramate. There’s lots of other meds to try: venlafaxine, amitriptyline, candesartan, Pizotifen… none have the horrible side effects that topiramate have.

As far as I know, to be offered the CGRP injections, you have to have tried at least 3 different preventatives.

I’m currently trying Aquipta, which I’ve had to get privately as it’s not available in my NHS trust.

Hope you find something that works.

[Ronniebongo in reply to Roonie22]

I’d like to try Aquipta but told by a neurologist on Tuesday I couldn’t have it as too expensive.. I’m ringing doctors in a minute to ask if I can have it 🤷🏼‍♀️I had to go private recently after a bad bout of migraine but I’m thinking I may have brought it on as I was taking codeine for my rls then I stopped it as I couldn’t concentrate at work ..

[Ronniebongo in reply to Ronniebongo]

I’ve been offered a GON injection in my neck by the neurologist..

[Roonie22 in reply to Ronniebongo]

I try to stick to only 8 days a month of painkillers (including Triptans) which is meant to prevent rebound headaches. I take cocodomol too, which isn’t recommended for migraines but it’s the only thing (along with rizatriptan) that I find works.

I’ve had a GON block. It worked for a few days so I was really hopeful, but migraines came back after that. It’s definitely worth a try. I also tried Botox which wasn’t effective either!

If Aquipta is available to you, I’d definitely push for it.

[troy04]

Is Aquipta working at all? How long have you been taking? Aquipta is the oral version of similar injectable CGRP blocker and Aquipta is probably the best out of all others. NICE has approved Aquipta In 2024, so you may ask your NHS doctor to convert the private prescription into NHS one to save the cost, you may get approved.

Topiramate has dreadful side effects but it has reduced migraine severity in some people. We all are different.

Candesartan (8mg) is an alternative in case you wanted to try it.

I hope you will find a solution eventually.

[Roonie22 in reply to troy04]

Aquipta isn’t available in my NHS trust, it’s a postcode lottery and I lost!

I’ve been taking it for 10 weeks. Having some improvements but not as dramatic as I was hoping for. Doctor says it can take over 6 months to see full effects, so I’ll keep going. Getting digestive issues as a side effect which isn’t great!

[designer111]

I cant believe these are still available, the first side effects are suicidal thoughts and self harming. These tablets made extremely anxious and teary so I came off immediately. If you want to try them monitor your emotions and see how you go, see if there is a correlation between the two.

Have you done a reset? Come off tablets completely (take about two months to do this) and have the healthiest diet, drink lots of water, look at holistic therapies. Not the easiest, and not practical, bit definitely worth a go.

[Ronniebongo in reply to designer111]

Yes I’m not going to even try them !! I’ve stopped the codeine and take a lot less sumatriptan than I used to .. I was taking my full 12 prescription each month before HRT now I’ve only taken about 10 in four months .. I also break the 100 mg in half and they work great for “mild migraine attacks” but nothing touches the severe ones .. also started my magnesium again and trying to drink more water as I am pretty bad at that 😩 see how it goes …

[purge63]

I had bad stomach pain with topiramate . When I stopped using it the pain vanished. Have tried to persevere with this drug at least 3 times , but had to quit due to side effects . It's the worst preventative I have tried in terms of negative effects..

[Florapaige]

I was prescribed this for migraine and it made me feel very ill. I felt constantly nauseous with stomach pain and exhaustion. It continued for months after I stopped taking it.

[bennevisplace]

I was on sumatriptan for when I felt a migraine coming on - not very effective. Shortly after starting amitryptilene I was diagnosed with chronic migraine and the neurologist prescribed topiramate. At the maximum dose of 200 mg/ day I had confusion, bad sleep, and yes suicidal thoughts. You have to ramp up the dose gradually, and down again. I've reduced my topiramate dose to 75 mg/ day, and take one amitryptilene at night, and now most days are pretty good.

Topiramate is a drug to take with caution. It works for some. Maybe it's a matter of finding the right dose for you, but then again, for some folk there may not be a right dose.

[Newby101]

l started getting migraines since l became menopausal. I’m now prescribed Zolmitiptran which is the only thing which moves my migraines. The inhaler is more effective for me than sulmitriptrin tablets. When they became chronic and l needed more medication l was prescribed Topirimate 50mg initially once a day and now twice a day. I l’ve been on this over a year now and they have definitely reduced the frequency of my migraines but not the severity. The only side effects l have had so far are pins and needles in my fingers. Hope this is helpful.

[Ronniebongo in reply to Newby101]

Hi yes that’s helpful, it’s the severity I need to reduce more than the frequency 🥴I was really put off by the reviews on Topirimate but I know everyone’s different 😳 I’m also having to maybe try pregabalin for rls , I’m on that site here as well .. what a lovely combination 😬🤦🏻‍♀️If I could get into my doctors it might help 🤷🏼‍♀️

[01Jacqui]

Have you tried Neurontin? It's a similar type of medication (used to prevent seizures) but as far as I understand, has fewer side effects. I tried Topiramate years ago for chronic migraine but it didn't have any impact on frequency or pain. Neurontin has been quite beneficial for me (not a cure of course but fewer migraines and less panic/stress around them), although I think has impacted memory but am experimenting with dosage at the moment to see if that positively impacts memory (perhaps memory is menopause related too). All the best.

[Ronniebongo in reply to 01Jacqui]

I’ve just looked up neurontin and it’s gabapentin !! Are you in uk or USA ? I was just saying I may try gabapentin for my rls and I did read small studies said that it has been known to help frequency and severity in migraine.. maybe 🤔 I might give it a go …

[Ronniebongo in reply to Ronniebongo]

I’m getting mixed up with pregabalin 🤦🏻‍♀️

[01Jacqui in reply to Ronniebongo]

I'm in Australia😊. I've had to do a lot of my own research over the past few years (work at a uni so have easy access to published papers), but my doctor has also allowed me to give a variety of drugs a go as I've had migraine for around 30 years, chronic for around 10 years 😒but getting less frequent.

[Ronniebongo in reply to 01Jacqui]

Yes mine are less frequent, once a month but a lot more severe, bed ridden vomiting for 20 hours , never used to vomit with my migraines.