March 15, 2021
I started getting headaches after getting over covid. CT scan and blood tests show no signs of any issues so my dr referred me to a neurologist. I started a daily dose of amitriptyline at night and when that didn’t help she offered the aimovig injection. I have had the worst headache today. It is worse than I’ve had before the injection. I’m not sure what to do.
I’ve done the Advil / Tylenol every 3 hours (first one then the other 3 hours later) with no relief. I have tramadol for pain if I need it but I hate to take more meds. I’m at such a loss.
March 15, 2021
Hi, stacharp. So sorry to hear you're dealing with lingering issues after fighting COVID. You certainly aren't alone here.
We can't give medical advice for your own safety, but there is some basic information I can pass along that might be useful.
First, some people do experience an uptick in symptoms when first starting Aimovig. It takes a month or more to get acclimated and start seeing results, so this may be part of your body's adjustment process. It's also important to note that everyone has different -- some people feel better on Aimovig, others have no change and some do get worse.
Have you been diagnosed with migraine? Migraine is more than just a headache, and it widely considered a genetic disease. There are usually 4 phases to migraine. This is a great article that breaks it down well: https://migraine.com/migraine-basics/migraine-phases/
It may be useful for you to seek out a headache specialist. These are different from neurologists, who treat all kinds of brain conditions and aren't usually experts on migraine disease. Headache specialists treat headaches all day, every day.
Lastly, there is still a huge gap in research on the longterm effects of COVID ... the actual mechanism of what's going on with you, and therefore the best treatment, may took a little different than the typical patient. Don't lose hope -- there are nearly 100 different treatments for migraines and if you're not happy with the results you're seeing, keep trying. It's also OK to seek out a second opinion or find a new doctor, so don't be afraid to do that.
I hope some of this is helpful -- hopefully others will be along soon to share their experiences or resources. In the meantime, feel free to ask us more questions. It's what we're here for.
I wish you a full and speedy recovery!
Melissa, migraine.com team
March 15, 2021
Thank you Melissa! This is all great advice. I honestly am not sure if I’ve been diagnosed with migraine or if that’s just how they are treating these symptoms. I was wondering if the new CGRP meds will even work if that’s not truly the cause. I did email a local headache clinic to share my experience to see if I’m a candidate...I didn’t realize there was such a specialist outside of a neurologist.
I do know covid is causing many long term issues and while I’m not alone, I am not quite used to losing days at a time due to headaches. I used to get up and workout every morning and now I’m afraid it might trigger a headache. I look forward to the nighttime because I know sleep is the only escape.
I appreciate your reply. Any information is helpful.
March 17, 2021
Hi again, stacharp. Thanks for checking in -- so glad I could help you get some info! It sounds like what you're going through is really confusing...
The headache clinic is definitely a great place to connect with. I'm glad you have access to one locally; they can be hard to come by. You may also want to have a chat with the doctor that prescribed you Aimovig to see if they've given you any kind of diagnosis. The tough thing about migraine is that it's usually a diagnosis of exclusion, meaning they only decide it's migraine when a ton of other possibilities are ruled out.
Aimovig has a very specific function and it's only been on the market for a few years. As of right now it's only being used for migraine. If you're up for it, here's an article about how it works: https://migraine.com/aimovig-erenumab-aooe/
I wish you success in your search. Keep taking good care of yourself and let us know how you're doing. <3 -Melissa, migraine.com team
March 18, 2021
I had to be taken off Aimovig, it made my migraines so much worse than before, I had a solid 2 month long one that would not break (intractable). I have since tried Emgality, it was better, but I developed a kind of leveling off on it and began to get used to it, so I have since been switched to IV infusion of Vyepti, and it has been a game changer for me. I'm down from 25+ migraine days a month to an average of 8-10 a month. I recommend switching different CGRP meds until you find the one that works best for you. Best of luck!
March 23, 2021
This is so interesting, thanks for sharing your story. I have noted that each CGRP is a bit different, but unfortunately I see many cases where someone tries and fails on one, and doesn't try the others. It sounds like you are "proof" that they really can be quite different, and it is worth taking the time to try the others! Keep us posted on your progress, we would be interested to follow your journey.
Melanie (Team member)
March 18, 2021
Thank you for sharing your experience. My headaches were pretty constant before the shot but afterwards it was so much worse. Nurtec which is another CPRG was prescribed but didn’t help. I’ve tried it twice for the bad headache pressure and it did nothing. I’m so glad you had something work for you. That must be such a relief.
March 23, 2021
I hear you here. I know how defeating it is to have something not work, to keep trying and trying and failing and failing. It can take a long time to find the right medication and dose, and I just wanted to offer my support during this frustrating process. I hope you will keep us posted on your progress.
Melanie (team member)