Need support feeling pretty low, not sure where to go from here
My migraines went daily March 29, (long list of prevention meds before this that obviously didn’t work) so I tried ubrely, at first it was wonderful but it didn’t last. I tried Qulipta and not only massive constipation but it didn’t help. On June 29th I got to try my first shot of aimovig and have been down hill ever since. The first day and the next after the shot the migraine was so bad I could barely get out of bed, I maxed out all the meds I could take. Ever since then I have pretty much doubled the amount of medication I need to use a day to try to stay sane and some days that doesn’t even help. Besides the pain I think one of the worst issues is the brain fog. It was so bad the other day I guess I somehow left my mini fridge open (I keep the aimovig and Humira in it) I didnt notice until I turned out the lights to sleep and saw the light from the fridge. I cried for hours after feeling so stupid and worried I ruined all my meds. Next day I was determined not to let it happen again and have DIY my fridge to self close, and might also get an alarm as a back up. I have my appt coming up next week and I’m pretty sure I don’t want to take another shot of the aimovig. As bad as they were before I can’t imagine trying to force myself through another 2 months to see if there is any improvement. I mean at this point going back to before the shot would be an improvement! I have posted about what has happen in different migraine communities around the web and have gotten mixed feedback. From this medication isn’t right for me, to you HAVE to wait 3 months, to I’m crazy because it isn’t a listed as an official side effect and can’t effect me from day one. I have seen a small handful of other people who have in fact said they went through something similar. I’m not sure why it’s not getting talked about more or given as a warning to those who try the shots, maybe it’s because it’s just such a small number of us. I really don’t know. And now I’m also left with, where do I go from here? Do I risk trying another brand, or do I just give up since there really isn’t anything left to try?
Hi
Thank you for sharing your concerns with us. You're not alone in feeling frustrating and exhausting from dealing with daily head pain. Please know we're here for you.
Please don't lose hope! There are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to manage migraine disease and most of us are on a combination of these, I sure am. Here is information on where to start out;
https://migraine.com/blog/migraine-preventives-start
Aimovig is a life changer for some people with migraine disease. On the other hand I've heard similar horror stories as well, you're definitely not alone in this. I'm sorry you're having such a difficult time with it. Have you had a chance to share your concerns with your doctor?I've found when I'm in extreme pain, my brain doesn't seem to function as it should and like you, I often make bizarre mistakes, and it's easy to be hard on ourselves. Were your medications OK?
Is your doctor a true expert in treating migraine and headache disease? You'll find I often suggest it's a good idea to seek out help from one of these expert doctors as they can have a huge impact in our care. Here's the thing - general neurologists may be fine doctors but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Many general neurologists who treat people with migraine and headache disease claim to be experts but that may not be 100% accurate. A true migraine/headache disease expert is board certified in headache medicine (not all neurologists have this additional certification) and treats migraine and headache all day, every day. Here is more information on why these doctors are beneficial and where to find them;
1) https://migraine.com/blog/really-find-headache-specialist/
2) https://migraine.com/living-migraine/change-thoughts-new-care/
3) https://headaches.org/resources/healthcare-provider-finder/
4) https://migraine.com/living-migraine/how-to-find-a-neurologist-or-headache-specialist
5) https://migraine.com/living-migraine/hiring-right-doctor
Please let me know what you think and I'm sending you wishes for a low pain day, Nancy Harris Bonk, Patient Leader/Moderator (team member)
I know it’s only been a couple of days, but it seems the aimovig must be in the wearing out phase as I have been feeling better. I also started taking the supplement but have yet to figure out how much it may or may not be helping. Since I have been feeling so good I’m getting really anxious about taking the second aimovig shot, and am wondering if I should be emailing my doctor about how much better I’m feeling to see if she still wants me to take it.
I'm happy to hear you're feeling a bit better. It may be not a bad idea to contact your doctor and see what she thinks about continuing this medication.
Please keep us posted! Nancy Harris Bonk, Patient Leader/Moderator (team member)
Dealing with chronic migraines and the side effects of medications can be incredibly challenging. It sounds like you've been through a lot with different treatments. It's understandable to feel frustrated and unsure about what to do next. Exploring other options or seeking a second opinion might be worth considering. Hang in there and I hope you find relief soon.
