hi
Aimovig has allowed me to live a normal life again since starting with it in the summer but I have had migraines for everyday since the new year and triptans are not working. So sad about this after experiencing normal life for a few months. Has anyone else had this experience?
I'm so sorry to hear that it's stopped working, I've just had my second injection but it's not started working on me yet. It must be so hard, to have a taste of what other people take for granted, having no migranes, then to be back to pain every day. I really hope you can find something else to help you.
Yes- It is so frustrating- you never know what’s going to help and when it’ll stop working. I’ve had 2 clear days now so hopefully this is the start of a long spell of normal life again!
I hope aimovig starts working for you- it is common for it to be a slow start I understand. All the best with it.
Yes I had a really good first year but it failed after that so they switched me to a different CGRP but that failed also. I couldn't try any of the others ones bc I have IBS and the CGRP's definitely make it worse, particularly the two remaining ones. This year has been terrible, I've had 5 rounds of Botox and still having them over 50% of the time. Although Botox still helps the severity, they think it might be a reaction to having a pain free (ish) period, which sucks.
It sounds like you've got stuck in status migrainus. I did, I booked to have an nerve block at the national migraine centre, I'm in the uk, which kicked me out of it. I booked privately, so pleased I did it as my neurologist wasn't great tbh.
I’d not heard of the phrase before but yes I think you’re right there. I ended up going meds free and tried to power through the pain. I’ve had 2 good days in a row now so here’s hoping 🤞
I hope the nerve block is successful for you. Is this like Botox/another name for it or a different treatment completely?
I've already had it, in May - I think COVID pushed me into status migrainus. It's called a 'greater occipital nerve block ' they inject a steroid and lidocaine into your greater occipital nerve in the back of your head on either side. Some people it helps greatly with migraine reduction overall but for me it made me back to normal, which is chronic but better than every day.
I think, from my experience, you can still have bad months with CGRP. However, once you have ended the current bad cycle you may go back to having good months, or at least reasonable ones. Try to use something else for your migraines like naproxen to try to break the use of triptans, even if it’s just for a day or two. Take to your bed if you can to help you cope. Ultimately if Aimovig is not working properly anymore you may be able to get a different CGRP. I was on Aimovig for a year, but then switched to Emgality which has been more successful. However, I still get about 11 or so migraines a month, which in my book is a success!! I think the best thing about CGRP is that it has made the migraines much less painful than they used to be, which allows me to get on with my life more.
thanks for this - makes sense yes. I stopped the triptans by mid week and did what you suggested. So far so good. Think you’re right about the severity of the migraine - I was able to cope without triptans just about, whereas in the past it would’ve been worse. I’m going to stay away from triptans. Thanks again.
Triptans are evil for me in terms of recurring migraines. I've stopped taking them for at least a month now to get them out of my system. I'm trying to go meds free as much as I can. I have managed in the past couple of weeks to 'out hydrate' bad heads. As soon as I feel one come on (usually in middle of the night), I down a litre of water and it can subside and go. A bit hit or miss though. But its stopped about 3 bad heads so far. I may try to drink a mass amount of water each evening as a preventative to see how that goes. As for Amovig, didn't work for me.
Yeah I think quite a lot of us realise the evil if triptans after a while! I’m trying to stay off them now. Never drank so much water - like you hoping it’s got to help!
Good luck with it all.
I really hope it does help you!
Did you try increasing the dose of the Aimovig? There are two levels. Migraines change over time, which isn't necessary permanent or due to treatment. But treatment can change their expression. I found that Aimovig after reaching steady state at the lower dose decreased the headache severity, increased migraine frequency, and caused more Auras. I went up to the higher dose and now mostly get migraine without headache. The same thing occured with Prestiq. There was a bad transitional point I had to move through. I'm combining Botox with the Aimovig, and use naproxen/Aspirin/coffee for pain (I can't take abortives).
Hi, I previously had the botox injections and although the worked mostly they were more painful than needed. I've been on Aimovig for over a year now and I've noticed a big difference in the severity, length & frequency. I take Naproxen only when needed as I've tried all the Triptans that I was able to have and I felt either out of body experiences or sick.
If you are writing a headache diary maybe start making notes of the weather, food and any extra stress or even auras that you are experiencing. I found this super helpful to work out what kind of headache/migraine was coming and how to deal with them individually.
Also, just to note but I was told by a headache nurse that people underestimate the power of the weather and how much this affects migraines. I find its a bit contributor to how I'm feeling and how strong a migraine I have.
I hope this helps in someway and that you start to feel the benefit again soon.
Best wishes, Samantha
I was just reading up and you can take either Nurtec or Ubrelevy as an abortive instead of a triptan(sorry about spelling) and this works for some people and sweeps away the extra CGRP. You could try speaking to your Dr and see if you could try this?
thanks - I’m currently trying naproxen daily during menstrual times as this is when they are worse but yes I will ask about these.
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