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How to deal with status migrainosus

Hi everyone,

I'm 23 years old and have been dealing with migraines for about 4 years now. I got bad headaches when I was a kid but developed into migraines once I started university. Last year, I had a really bad flare up that led me to have a migraine for about 5 months. It came on as it usually does, and I assumed it was another typical migraine, but after 2 weeks I decided to go to the doctor. I got prescribed some rescue medication that improved my condition, but then it returned after 2 days of no pain. I had to move back home (I was studying abroad), and was in debilitating pain for months on end. I did many tests to explore possible reasonings for the sudden flare up, but everything always came back normal. This included an endoscopy and colonoscopy, since I was having many GI issues. I tried different medication, both preventative and rescue, since my neurologist thought this might help tackle the ongoing attack. Nothing seemed to work. Eventually, after about 3 months of this, I started getting anxiety attacks for the first time in my life. I decided to start talking to a therapist, who quickly diagnosed me with anxiety. I think talking to her was what helped me the most during my attack, and soon after starting therapy and dealing with many issues that seemed to have spiked my anxiety within the last few years, the pain slowly went away. I never fully comprehended what exactly caused my flare up in the first place, but I assumed that it was mainly caused by many triggers influencing my anxiety and manifesting as a status migrainosus.

Since then, I've had my occasional migraines. But none that last for longer than 3 or 4 days. And more often than not, they have been easy to deal with - not super bad pain, so manageable with my medication and some rest. However, I have been hit with another bad flare up about 2 and a half months ago. This feels similar to the attack I suffered through last year, an intractable migraine with no reaction to any medication. Once again, all my tests have come back clean. This time, I was even hospitalised for many days to be given IV treatment, with no change in my condition. I struggle to eat since I suffer with really bad nausea, sometimes going so far as vomiting (even though I haven't eaten much that day). The headache is always bad, with light sensitivity and more pain moving around included. My neurologist is confused and sent me to a psychiatrist in an attempt to find some kind of functional connection. This psychiatrist believes that putting me on anti-depressants is the solution, but I'm already on anti-anxiety medication that works really well. I'm also tired of trying new medication that not only doesn't work, but also gives me horrible side effects that worsen my condition. I've talked to my therapist extensively about her opinion on the matter, and she doesn't seem to find any emotional issues that could be associated with this attack like last year.

So basically, I'm desperate to find something that will work since it seems like last year's solution won't cut it this time. Any recommendations for what to do? I'm currently exploring things outside of traditional medicine (like acupuncture) to see if that does the trick. Any other ideas would be greatly welcome. Or any kindred souls who can tell me they went through this and survived, that would also be great. I feel insane, because everyone keeps telling me I'm healthy and that this is all a functional response so nothing is wrong. But why do I feel so sick then? I can't function as a normal person, can barely leave my house for a stroll. I feel like I'm disabled without a "real" reason why, and everyone keeps questioning it because migraines are something you can't see eternally.

If you've read all of this, thank you. I hope someone can give me a little hope.

  1. Hello , I'm so glad that you've found our community here. What a long and frustrating place you have been in these past couple of years with months-long flare ups. I can hear how especially discouraging it is when all the tests come back "clean" or "normal" and that what helped before doesn't seem to be something that will make a difference this time. I hope that some of our community members who have experience where you are can chime in here and let you know that you aren't alone.

    Migraine attacks can be very debilitating, and I wouldn't say you don't have a "real" reason to be struggling to function. You are doing all the things you can to get answers and support from your medical team, I wish that they were able to help you manage the pain and get relief! It sounds like you have tried so many different things, but I did want to share this article that has information on migraine treatment options, https://migraine.com/migraine-treatment.

    I know it has been several days since your original post, and I also just wanted to check in with you. Please know that you are not alone! This community is here for you. Sending you gentle hugs. -- Warmly, Christine (Team Member)

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