Vyepti (eptinezumab)

[natoneill]

I read last week that his has now been approved for use with episodic migraines

has anyone tried this? It’s an infusion given every 12 weeks

I suffer with a hormonal 5 day migraine every month for the last 6-8 years and have tried preventative meds, taken the mini pill and also hrt but nothing has tricked the migraines yet

Still hoping that there is something to help me

[Cat00]

It will take a while to become available once it's been approved by NICE and some areas may choose to not offer it anyway if they think its too expensive.

[natoneill in reply to Cat00]

how does one go about finding out if it will be offered in your area?

[Cat00 in reply to natoneill]

The only way I would be able to find out is by asking my neurologist. They've had to apply for funding to give me Botox or the CGRP antibodies so it can take time. There are certain requirements you have to fulfill in order to qualify for them anyway, like having migraine over 50% of the time and having already tried and failed 3 migraine preventatives. But although many of the CGRP's that have been passed by NICE can be used for episodic migraines I haven't heard of any of them being used that way, at least not in my part of the country. It would be a very expensive option over triptans I think.

For me personally I have never found any drug or injectable that can help menstrual migraine anyway, and I've tried about 15 so far. They are the hardest migraines to treat in my experience. Contraceptive pills, HRT and even hysterectomy have been found to not help menstrual migraine sadly.

[natoneill in reply to Cat00]

I was really hoping one day something would work for my menstrual migraines

The thought of having them for the next 10-15 years is depressing

[Cat00 in reply to natoneill]

Yes probably not the best person to speak to then, I've had chronic migraines for over 20 years....!On the upside, for me, is that my neurologist says menopause might be good for me, but that's about 10 years away most likely. She also says there are a lot of new drugs in the pipeline so you never know?

You could try The Migraine Centre, they give you private access to treatment but they are also a charity so they might be able to show you your best options that are currently available. With that information you could effectively lobby your health care provider to help you.

[natoneill in reply to Cat00]

I have had migraines since age 10 or 11 and since having children 16 years ago they have definitively got worse. During pregnancy was awful, had to be hospitalised twice as I cldnt use my usual meds and was vomiting continuously.

I’ve never been referred to a migraine clinic although I did see a specialist just after having my second child, 12 years ago, but he never really offered anything, just told me not to take codeine

I had the coil Fitted last year and this hasn’t done anything for my head, although the physical period has stopped, except for a bit of spotting here and there

At the moment I am using HRT patches and around the time of my period I cut A Patch in half so am wearing a patch and a half. I do this for abt. 7 days.. I discussed this with a friend who is a meno specialist and it’s listed on the migraine centre website as a treatment. I’ve only just started it so will have to wait and see each month if it makes any difference

[Cat00 in reply to natoneill]

You need a referral to migraine specialist, it's the only way you can get access to these sort of meds, unless you go private.I also had horrific migraines while pregnant with both my kids, they also stopped me from breast feeding at 6 months both times bc they had to restart treatment as I was having migraines everyday.

I started having migraines at around 5 but they only became chronic at puberty.

[Discodog in reply to natoneill]

I’m in a similar place to you it’s a journey alright! I’m currently trying topiramate as a preventative (3rd or 4th type) coil has improved the migraines a little I think but they are still there and the triptans just don’t do the job as well as they did. I was hoping these injections might be the answer. Going to ask at upcoming headache clinic appointment 🤞

[Cat00 in reply to Discodog]

I've had two types of CGRP antibody injectors, the first year was great but the next 2 years were really bad. Whatever happens they don't take away the menstrual migraines for me. Im on a pill continously so i dont have periods anymore but i still get the same amount of migraines. However my neurologist says that for some people they are a miracle drug, they just take away all their migraine. So they are worth a try. One concern is if you have IBS or raynauds, they can really aggravate those conditions so you tell them if you suffer from those conditions bc they will give you a different CGRP.

[Discodog in reply to Cat00]

Thanks - good to know.