Persistent Migraine Aura -- Newly Diagnosed & Still Suffering
Hello All,
I wanted to share my own story since I found so little on the internet about this diagnosis. I am a 30 year old female with no major or unusual medical problems, I'd say I'm pretty healthy. I had my first migraine with aura a few years ago not long after I had my second son. I had never heard of this phenomenon and went to the ER thinking I was going blind. I did not have any pain, just visual disturbances. From that point on I had them very rarely, maybe once a year, with visual symptoms typically disappearing after an hour.
9 days ago I had what I thought was a migraine, I suddenly had blind spots in my vision and my top lip went numb. It was in the evening so I just went to bed. I awoke the next morning with no relief. For the past 9 days I have experienced the following visual symptoms: double vision (most notable and uncomfortable symptom), blind spots including dark and bright spots, light sensitivity, trouble focusing from one image to the next, mild dull eye pain and an overall feeling of strain, increased after images. To put it lightly, my vision is real screwed up. When not working or chasing my kids I've spent nearly every free moment in a dark room sleeping or with my eyes closed. It's unbearable.
3 days in I saw an optician who said I had some "floaters" in my left eye, but nothing else of concern. 5 days in I went to the ER, they did a CT scan and bloodwork and found nothing unusual. 7 days in I saw a second eye doctor who told me my eyes were perfectly healthy. Today I saw a neurologist. He reviewed the CT scan and did some standard tests and found nothing concerning. He finally concluded that although he can't be 100% certain, he believes I am experiencing Persistent Migraine Aura (PMA). He wants to do an MRI to rule out any other possibilities.
So here I am, struggling with these strange visual disturbances and hoping tomorrow will be the morning I'll wake up "normal". The neurologist wants me to take Vitamin B-12 and Magnesium and we will talk about other options after the MRI.
Any advice, thoughts, similar experiences or words of encouragement would be greatly appreciated, thank you!
Hello Ashleigh,
First of all I wanted to say I'm sorry you're going through this. Though I have migraine they do not come with aura, so I can only imagine how disorienting your symptoms must be right now. I wish I could somehow audio record my answer to you so you wouldn't have to struggle to read this, but I hope it is of help anyway. It was a smart idea to seek help as soon as you did, and from several different specialists to rule out anything that could be causing it and hopefully find something that will help treat it.
Vitamin B-12 and Magnesium can both be helpful supplements for migraine symptoms and that's a good place to start. If the aura continues and your tests come back normal, the doctor might discuss preventive medications or other alternative therapies, and feel free to post any questions here.
Hoping that the aura goes away as quickly as it came, but at least it sounds like you may know what you are dealing with and that is an important first step.
Be well,
LisaHi Ashleigh,
I am so sad to hear you are going through this, but you are not alone. I have had Persistent Visual Aura since Jan. 2018. My story is similar to yours.
One year after the birth of my first son, I was rear-ended at a red light. After this, I started experiencing infrequent auras that passed just like yours. This was the case for 5 years. Then, the last one in 2018 left my vision really screwed up. I have many, many distortions:
-"water droplets" running through vision
-static shaking light on every surface and the appearance of the world shaking
-Extensions from every light, streaks
-Blinding reflections in places they never were before
-Floaters constantly, some light, some dark and some big blurs through vision field
-Bouncing chain-like hooks through vision
-after-images
-a general "off" feeling in vision, like can't focus in
-The worst one for me is that movement is hard to see now, like I can't process it, I feel like I am on a ride when movement is fast or too close to me and it just blurs
-This has all made reading and writing difficult, and reading and writing throw me into full auras of vision loss
-I have frequent headaches months on endI don't know if sharing all this will help you, but sometimes, I just like to remind myself that I am not alone. That is why I visit the forum still.
I hope you have found peace in your journey.
Kate
Thanks so much.
I am struggling with daily symptoms that haven't went away since they have appeared in 2018. So far I'm on the 4th neurologist and not sure the count of the vision doctor I'm on. The visual distortions are the worst symptom for me regularly.To all of you (Kateums, Ashleigh, Samatha), I am so sorry to hear about the persistant Migraine Aura, but since you do have this it sures helps me hear that I am not alone. I am 64, have had Migraines with visual aura from 13 - 40, and from 40 to the present, have been Silent migraines (Visual aura, no headache). That was all handleable but now the persistent migraine aura is a tough deal. With my normal aura's that have the blindness, streaks, zig zags, they always go away in about 45 minutes. But another thing I have had all my life are bright flashes in my field of vision (like looking at a small flash bulb). It usually fades away in about 1 minute, but 2 of them over my life time were severe enough that while they faded, they left blind spots to this day. But they are on my side vision, so just learned to live with it and usually forget about them. But the one fear I always had, is what if one of those flashes pop up in my central vision, and does not leave. Now that has happened 3 days ago. While this spot is very small compared to my 2 severe ones, so far it has not gone away or faded, and the anxiety of seeing it directly in my central vision is tough. Praying it fades and I get used to it...Going to the opthamalogist today to just rule out retinal detachment, but as we all know, I am 99% sure I will get the clean bill of health, as they see it. 😀 Love to hear back. Peter
Hi @pcr,
Thank you so much for sharing your journey with us. It's validating to know we're not alone!!
I hope all goes well at the ophthalmologist today, will you let me know how it goes?
Nancy Harris Bonk, Patient Advocate/Moderator
Hi Nancy. Thanks for checking. All great at the Ophthalmologist, as I guessed. Macula, Optic Nerve, Retina, etc, all check out much younger than my age suggests. They know my Silent Migraine w/Visual Aura history and they understand that. But the daily bright flashes that pop up (as explained to them like looking at a small flash bulb) that usually fade away in less than a minute are puzzling her, although she certainly guesses they must be related to my history of migraine But the few that have hung around and caused blind spots, had her ask about MRI's? Even though she now knows I have had the 3 most expensive MRI's at UW Madison to rule out any embolism/small clots, etc., she suggested a Neurologist in Green Bay to follow up with, just in case he has any new ideas. Am going to do that.
Hi @pcr,
Thank you for the update! Good to hear things checked out.
I did want to mention there are several, about 20 doctors who are certified in headache medicine practicing in WI. These expert doctors treat migraine and headache disease all day, every day and can make a huge impact in our treatment. 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 others. Let me share this link with you that has certified doctors listed in on the NHF website; https://headaches.org/resources/healthcare-provider-finder/?tex_state=wisconsin&view=list.
Let me know what you think!
Nancy Harris Bonk, Patient Advocate/ModeratorThanks Nancy. Makes sense and I will take a look at those and see where they are all located. There has to be some type of drug that can calm my brain down and stop these daily bright flashes. We know its going on in the brain, since all eye data is perfect, and all MRI's show no past embolisms, etc. Peter
