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Diagnosis of Migraine & Headache Types

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

  • By Melmom8

    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.

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  • By Nancy Harris Bonk Moderator

    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

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  • By Nicole

    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.

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    • By Ellen Schnakenberg

      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

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  • By Katie M. Golden Moderator

    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/

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  • By Thisgirl

    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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  • By Silent Migrane

    Hello all my name is Regan and I was just diagnosed with migrane without headache. I have been having bouts of vertigo and nausea with vision difficulties off and on since 2012 with 2 events that kept me in my recliner for a day each and had lingering effects.

    I have never had any headache or pain associated with these events. I was prescribed Maxalt to stop the attack and then a week ago prescribed topiramate as a preventative. I was to take 50 mg 2x daily and I took that for 5 days and I had some very disturbing side effects, so I cut back to 50 mg 1x for the last 2 days.

    Today I have decided I am not going to take any more of this medication due to these side effects. Have any of you heard of this diagnosis, and have you heard of topiramate being used for this type of migrane? With the type of side effects I have experienced I would almost prefer the symptoms I’ve been having to these side effects. My wife is afraid of me and is making me sleep in our guest room until she feels I’m back to normal.

    Regards,

    Regan

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  • By Kerrie Smyres Moderator

    Regan,

    Here’s some information on “silent” migraines: https://migraine.com/migraine-types/silent-migraine/. Any treatment that can be used for migraine prevention can also be used for silent migraines. Topamax is a popular migraine preventive, but it can have intolerable side effects for some people. The American Academy of Neurology published a list of recommended preventives based on a review of studies for all the different possibilities. You can see the recommendations here: https://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/.

    Best of luck in finding an effective preventive.

    Kerrie

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  • By Azi88

    Hey guys today i had nightmare lol.. I went to hotel for lunch i sit down enjoy meal and suddenly i found out that i have some disturbance in my vision i ignored it after 10 minutes i start to see zigzag lines and light flashing i understand something is seriously wrong i left to office on full speed on the way i found out that i vision is getting worse i cwhen i reached office i washed my eyes i thought im gonna lose my vision any minute i start to panic but after 5 minutes it get normal again i said what the hell was it i start working after one hour headache starts in forehead and after few mintes just right side stiff neck…… Is it important to see doctor now or its just okay because i have never experienced this issue in my life btw im 27 yrs old man

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  • By ktyler44

    Azi88, that sounds like a classic migraine with aura. I remember the first one I ever got. I was 30 years old and pregnant. I had no idea what was going on. But after a trip to the ER and tests to make sure everything else was okay, they said they thought it was a migraine. Unfortunately, that was just the first of many.

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  • By msscott

    And this is why I joined–when I saw this thread, i had to share my experience.

    Ocular aches, as I call them, along with random but frequent headaches…long story short: made it to a specialist who diagnosed me with vertical heterophoria. apparently for years my eyes have been misaligned just a small bit and after most of my life living with this misalignment, the one eye muscles finally gave out, which caused the ocular pain, headaches, and dizziness (and shoulder ache…the list goes on and on!!).

    anyway, now have realigning lenses and in a word, it’s been miraculous. i encourage everyone to do their research on vertical heterophoria….not much known about it but thank goodness a few doctors do!!

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  • By Nancy Harris Bonk Moderator

    Hi msscott,

    Thank you for sharing your story with us. I’m so happy that you’ve found a solution and are having fewer attacks.

    Keep us posted on how you are doing,
    Nancy

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  • By dukdog

    Hi there. I wanted to give you all some info that might find interesting. I am 59 and got my first ocular migraine at 22 yrs old. Since that time I have gotten them off and on every 3-6 months or so. I know that when I get busy with my business they can happen every day. Like you mentioned.. about 25 minutes for me (exactly).. they start off as a tiny crescent shape with jagged edges that has a lot of color.. it starts off small in a lower corner and becomes bigger. By the end of the 25 minute period, as it grows, it also gets more transparent. It seems like about 50% of the time, I get a headache on the opposite temple of the side the migraine came on afterwards. The other 50% of the time, I get no headache at all.

    I want to also add that sometimes I get kind of spacey for a few hours.. No one really notices it but I feel like I am just not there.. but it always goes away in a few hours.

    Here is the interesting part. I used to live in Southern Cal .. and that is at about sea level. I moved to Reno, NV at 4,500 ft. I started getting them way more frequently. Sometimes every day for 3 to 4 days. Last month I started getting them … I think about 3 in one week. I went to FLA for work and vacation for two weeks. This was a very stressful job too in FLA. I had not one migraine that two week period. I came back home to Reno, and got one the next day.. and two more that week. ELEVATION I read can cause these too. We are most likely going to move soon.

    Hope this helps.

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    • By Nancy Harris Bonk Moderator

      Hi dukdog,

      Interesting! Thank you for sharing that with us. In addition to changes in the barometric pressure, I would imagine a change in elevation could have a strong impact on some people with migraine disease.

      Keep us posted on your potential move!

      Nancy

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  • By egmujica

    Hi everyone 😊

    I have been experiencing ocular migraines since I was 10 yrs old. I can still remember the first time, I was in 6th grade and was horrified because my tongue went numb, I couldn’t speak or see, and when I began walking, I felt as if I was floating on air.

    I have been battling these migraines every year since then; I am now 37 years old. Throughout my teenager years, it was horrible. Almost everyday o experienced them. I was put on several different types of medications, until finally I started experiencing them less and less.

    As an adult, I had experienced even less occurrences. Once a year if even that. Suddenly, within this past year, they have been happening more often, and they have changed. As of last June, I have had 4 different ‘attacks.’ One of which led me to the emergency room. I have always experienced the lights in my vision, but have recently changed to the squiggly lines. My left hand has gotten so numb that it begins hurting with excruciating pain. I am a little more aware of my surroundings now while I am experiencing an attack, but the symptoms last longer. The lines go away, so then I’m preparing for the next phase, which usually is the numbness. Instead of just my hand and my tongue, now an entire side of my face will become numb as well.

    Today at work, I experienced one. There were no obvious triggers. Suddenly, I was unable to see if I focused on one particular item. Then I felt my hand beginning to go numb. I stood up and began walking around, trying to distract myself of what was going on. I took an imitrex and in about an hour, the symptoms began subsiding, but the headache pain was just starting.

    I’m considering scheduling an appt with a neurologist. Has anyone here had one actually be able to find a medicine or remedy that actually helps resolve these symptoms?

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  • By Nancy Harris Bonk Moderator

    Hi egmujica,

    Thank you for sharing your story with us and being part of our discussion forum!

    It’s not uncommon for migraine attacks patterns and symptoms to change over time. Having said that, it’s always a good idea to let the doctor know when we experience changes so he/she can rule out anything more serious. If you haven’t had a chance to contact the doctor, I would encourage you to.

    “Ocular” migraine is a descriptive term, not an actual diagnosis. The symptoms you’ve described, visual disturbances, numbness and other, can be found in migraine with aura. When you get a chance take a look at this information; https://migraine.com/migraine-types/migraine-with-aura/.

    Once an accurate diagnosis is obtained, you can get the correct treatment and hopefully feel better!

    Will you keep me posted?
    Nancy

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  • By Truth101

    I really feel bad for everyone here and want to add this. Hope it helps. I had something I called the rainbow ocular migraine. No pain, just it impacted my vision with this vibrating rainbow vision that really affected my ability to see. Then it was followed by a central focal point blindspot. All total about 30 minutes of not being able to see well.

    Come to find out this was caused by aspartame………..anytime I had anything artificial sweetener at all, this happened to me. I now eat nothing or chew nothing that is non fat or artificially sweetened. I only use brown or raw sugar, or agave or honey. Absolutely nothing else. If I do this, I don[t have these anymore at all, but you have to be very careful. read the labels….

    The other thing is I have had horrific pressure headaches where I felt like my head was being pumped full of air and about to explode. This was due to MSG. I moved to Canada and it stopped because their laws are different than ours about what is allowed into their foods but that is changing….

    Natural flavorings along with a long long list of other names for MSG is in our processed foods so, again read your labels and eat fresh.

    I moved back to the states and these headaches have started again so I have to be extremely proactive about everything I eat and cannot eat out at all unless it’s sushi and even then – no soy sauce. We are being poisoned. Have now for a long time. So eat fresh as much as possible.

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  • By egmujica

    Hello Nancy,

    Thank you for sharing that link. I had a chance to read it and found a lot of siimilarities to what I’ve been experiencing. I’ve never known what my formal diagnosis was. My doctors have only described it as a migraine attack. I haven’t scheduled an appointment with my doctor yet, but I will. Thank you for your support. I will definitely keep you posted 😊

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