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Ocular Migraine More Freq. - Can it mean something Worse?

For the past 5 years (since age 47) I have occasionally been getting ocular migraines without much headache but the loss of vision and flashes floaters etc. lasting about 30 min. For past year it is monthly and now more freq. It comes on suddenly and at any time without warning. I am very very scared. Someone told me to immediately see a neurologist. I did when started 5 years ago and they found nothing. Since it is still happening and more freq can this mean something else is very wrong????

Scared in NC without any family or friends.

  1. Hi Melmom8,

    I'm sorry you are going through this right now, but now that you're here, you are no longer alone!! 😀

    Any time we have new and/or different symptoms, that can sometimes be very scary, it's always a good idea to discuss them with our doctor. As much as I'd like to say everything is OK, the only person who can do that is a qualified doctor who will give you a complete exam, go over your symptoms and take you and your family's medical history then come up with a diagnosis. I'm sorry you are going through. But now that you're here, you are no longer alone!! 😀

    Getting an accurate diagnosis is important because it will enable us to get the correct treatment and then we can learn all we can about our particular type of migraine and/or headache disorder. "Ocular" migraine is not a diagnosis, but often used by doctor which makes things confusing. Here is an article that will help clear things ups; https://migraine.com/blog/those-ocular-optical-and-ophthalmic-migraines/.

    Keep us posted on how you are doing, OK?
    Nancy

    1. Hi, my name is Nicole, I stumbled upon a migraine article, which lead me to reading and reading and then signed up to this great sight..I have been poking around reading these different forums. Because we are all so different and have different migraines, I’d just like to offer up what I have discovered in hopes that it can help someone else the way it helped me. Here is a little bit about my story:
      I had/have migraines very bad started at age 29 am now almost 38, I have ocular aura migraines and a lot of the time mimmick stroke symptoms. I’ve ended up in the hospital, the ER etc..I have seen a couple neurologist, stopped seeing one of them because I was not satisfied at all. I see a neurologist now who specializes in migraines, in Boston at Mass General hospital. Prior to him, I was put on Topomax which to me, (just my personal opinion) is the worst medicine out there and surprised it is still on the shelves after reading the forums of god awful side effects of that medicine-it is scary. I stopped taking it and at that point was on a personal mission..I thought to myself there are so many natural ways of healing and helping one’s body, vitamins etc…it’s done all over the world..I was so sick of doctors saying hey try this medication, no ok try this medication, oh the insurance company came and dropped off this medication, try these samples..and that is when I realized, this country is so run by and pushed by medication, we are run by pharmaceutical companies, so much money is made by drug companies…I thought why isn’t anyone researching natural remedies. So I did and I did a lot of research. Bottom line is, I stumbled upon ButterBur
      ( PA FREE ), by a company called Petadolex, I have been taking it for 2 years now and my headaches have been cut by 70%. I take 75 mg 2 times a day along with CoQ10 combined with Fish Oil, ( I get it at a vitamin store, they all carry them) take that 2 times a day as well. I also take a Super B complex vitamin once a day. In my case, this has been by far better than any prescription drug, it has helped me more than anything I have tried, and I am not putting all of that medication in my body. I urge others to try it. ButterBur has been used in so many countries for almost a century, and so many other countries push it for migraines, just not our country. I truly hope this helps someone, again it is just my personal story, and what changed my life for the better, it has totally changed my migraine life.

      1. Hi Nikki,

        Vitamins saved my life. I had a severe vitamin deficiency that had been diagnosed, but I was never told about it and it was never treated for so many years I now have permanent damage. A comorbid condition means I don't absorb things well.

        Ocular Migraine is not a diagnosis, but many non-headache specialists make the mistake of using the term. Terms are important because we all need to be speaking the same language to be sure we're talking about the same things together 😀 Here is a good piece on ocular Migraine to help you: Those Ocular, Optical, and Ophthalmic Migraines https://migraine.com/blog/those-ocular-optical-and-ophthalmic-migraines/

        On another thread I let you know that Petadolex is no longer PA free, and therefore most docs won't recommend it anymore. It's not because of pharma, but because they want their patients to be safe. The company I hope, will soon go back to making them safely again.

        Please be careful and make sure that your headache specialist knows everything you're taking, and every change you make. If you're on vitamins, you need testing to be sure you don't become toxic. Yes, even some B's can become toxic and actually cause headaches. This is really important, okay?

        In my case, it turned out I was allergic to the fish oil capsules, and changed to krill oil. This was satisfactory for me and made me feel much better. Ubiquinol is the active form of CoQ10 and should be taken in an oil form for best absorbability.

        Hang in there, and congrats on doing so much better!!

        ~Ellen

    2. Nikki,
      Thanks for sharing your supplement regimen. All of the vitamins and herbs you mentioned are great for helping with Migraines. If you can manage your headaches with these and take less drugs that's fantastic! I've included a link here to an article about other Natural Remedies in case anyone else who comes across this is curious to learn more:

      https://migraine.com/migraine-treatment/natural-remedies/

      1. Hi there, I just wanted to chime in here. I created this account just for this reason! Melmom, I wanted to tell you that I understand how you are feeling. I started to get auras and ocular migraines when I was 5 years old. I was so scared! Since then its been awful. I am 30 now and as I age, they seem to get worse. Sometimes I have pain with them and sometimes I do not have pain at all. Days before I get one I can tell that my mood has changed and sometimes I would WISH it to come so I can get it over with. I have so many flashers in my eyes. The flashers are so bright they cause full on auras. I found that if you IGNORE and dont follow the flashers, look away from them, it is a lot easier. I also found that I had a b12 deficiency as well as d. Once I fixed those my auras seemed to have gotten alot better. I have learned to accept them, and there is nothing to be scared of. You are ok, its just a really scary event, I know! There are still times when I get series of auras and flashers in a row I have to go to the eye doctor to make sure my retina or what ever did not get injured. Imetrex will not help the auras. But if you get really nauseous, ask your doctor for prescription for that, I carry that around with me at all times! It has SAVED MY LIFE! I also take topamax. I would get 10 auras a month, now I get 1 a month. It takes some time to get used to but if you really have a problem with them it makes a difference and gives you your life back. At least it did for me, I will probably stay on topamax for life!

        The point of me writing to you is to tell you not to be scared. You are ok. They are called classic migraines with auras. I have learned to overcome them and not let them over come me. When I was young I was extreme. Its really hard to explain to someone what is going on with you. The only one who fully understands is someone who is in your shoes.

        Good luck to you and stay healthy

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