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Really a migraine? Only second one but barely let up in 3 weeks

I had what appeared to be an ocular migraine 2 years ago. I got mild headache and nausea but was totally over it in less than 24hrs. Then 3 weeks ago I had the aura again and soon after the nausea and headache and wanting the dark. The headache wasn't that bad, but the nausea was terrible and I had terrible photophobia. I felt horrible for about 40 hours and then I felt like it was gone for a couple of hours and just like that I got another aura. Pretty much the same feeling except being at home I went and lay down straight away and that seemed to help. But I got another aura the next day and the next! And then for another 4 days I had headaches (not severe), nausea (severe) and eye issues. Mostly photophobia I think. I could not bear to use any screens. I had a week of feeling fairly normal, but still finding it really hard to read. Even now I find I can sometimes be ok on a screen but reading black text on white paper it just feels way to glarey and uncomfortable.
I'm getting an MRI done soon as my endocrinologist thought feeling like that for that long was not necessarily migraine although my GP didn't seem too concerned. I am also seeing a neurologist in a couple of weeks. So much of what I read about migraine makes me think that's what it is, but anyone I know who has them says they are gone within a few days. I feel like I can't function because every time i get sunlight in my eyes I have to slow blink as I feel so scared I'm going to get the aura again and I can't go to shopping centres, the fluorescent lights are too bright. I tried to have an eye test and had to abort as was sure I was going to get another. I didn't get the aura but I got a headache later and bad nausea.
It feels like I'm in some kind of horrible loop and it just keeps getting set off again. I guess I just wonder if this does sound like migraine or whether it's something else? I also get blocked ears frequently and frequent headaches that aren't that severe without the other migraine symptoms so I also wonder if I've been having some milder form and now it's progressed to more classic but without really getting over properly?

  1. Hi lynster,

    Thank you for reaching out to the discussion forum - we're glad you found us!

    When we have new and/or different symptoms it's always good idea to discuss them with the doctor, which it sounds like you did - good for you! I wish I could tell you exactly what's going on, but only a qualified doctor can do that. I'm happy to hear you'll be seeing the neurologist in a few weeks. Let me share an article that will help get you ready for your appointment;

    Ocular migraine is not an actual diagnosis, rather a descriptive term. Migraine with aura has some of the symptoms you mentioned, including light and sound sensitivity, nausea, dizziness and many others. I'm not suggesting this is what's going on, rather information you can share with your doctor. Typically migraine attacks lasts from 4 - 72 hours, but some of us have them for much longer, I'm sorry to say. If you'd like to read more about migraine with aura, here you go;

    Fluorescent lighting can be strong trigger for many of us. There are glasses specifically designed to help with this you may be interested in reading about. There are two companies I know of, TheraSpecs and Axon Optics. I have outdoor sunglasses from TheraSpecs and LOVE them. Other advocates I know have indoor glasses from TheraSpecs and also love them. Here is more on them;

    I hope this helps, please keep me posted on how you are doing!

    1. Thanks Nancy. I've had the MRI and I've been to see a neurologist. MRI shows some hyper intensities, which she thinks is due to undiagnosed migraine's. All the other weird symptoms I described sound to her like they are in fact migraines. It's such an odd condition I really can't get my head around it. I recently got some new glasses with a special grey tint that is supposed to help with the photophobia but I can't say I'm noticing much difference. I also got some theraspecs. I'm in Australia but I was able to order them directly online. I've only just got them so not sure yet how much they will help. Did you notice a difference straight away?? I've only got the outdoor ones but I will probably order some for indoors too.
      I'm keeping a headache diary now and seems pretty clear that I'm getting them often, usually just headache with nausea. I've not touched red wine/ chocolate / avoiding fluorescent lights and I've not had an aura again yet. But the light sensitivity is constant. Not totally disabling like the big migraine that led me to this diagnosis, but going to a shopping centre is hell.

      Well I just wanted to say thanks for the reply and give a little update. I suppose now I've been diagnosed I should move over to one of the other sections and see what I can learn about this weird condition!

      1. Hi lynster,

        Thank you for the update! You're correct, learning about our particular diagnosis enables us to get the correct treatment and become an empowered patient!!

        I also have outdoor TheraSpecs which are very helpful. I have tried on and worn the indoor TheraSpecs, for a short time, and found them to be very soothing on my eyes. You may want to give them a try as well. I know many people with migraine disease who swear by indoor TheraSpecs.

        I look forward to your next update!

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