Yes, it takes research and lots of studying and asking questions to figure everything out. I am still trying after a year. Thanks for the post. I am sorry that you are having such difficult eye issues, but I am glad that you are perservering to find a sloution. Good Luck!

I've dealt with migraines for many years, I get some rather wacky visual effects with them as well. I also get smell "hallucinations" which fortunately for me tend to be pleasant scents.

If you can find someone in your area that is a migraine specialist they might be immensely helpful. The specialist I see has made a huge difference for me, all he does is treat headache and migraine cases. Although it has taken some time to get to just the right combination of drugs to mostly eliminate the unpleasantness of migraines, it has certainly been worth it. Little is known about the fundamental mechanisms underlying migraine, so at this point my opinion is that the more experienced the physician is at treating migraines they more help they might provide someone like you with some of the more unusual effects of migraine.

One warning, although you probably already know this, even if what you are experiencing with your vision closely matches up to various descriptions you have read, there is always the possibility that it is not migraine. A migraine specialist should be able to also sort this out.

Good luck. It is no fun but I hope you can get some relief.

-Willie

I definitely understand and if it's not from migraine, bottom line this is what I am seeing and I have something to show the doctors. Unfortunately I have a very strong family history of migraine and I just found out last week that my Grandmother and Aunt both had benign brain tumors. My Aunt's was missed for years and had obviously headaches and vision problems too. It is what it is, i'm so glad I have a visual now (pun intended).

Great you are finding an explanation.

Migraines are strange things--I had about a dozen over 10 years that were totally painless, but gave me quite strange symptoms including vision in 1/2 of the field of view, and inability to do logical tasks and memory problems. Each lasted about 1/2 day and at first put me in the ER where the docs were sure I had a stroke, brain tumor, aneyurism, or other life threatening problem. The brain scans showed "nothing" ;-)

I got so I knew when I had one and when I was at work, just changed from brain intensive work to management activities! They seemed to have disappeared a few years back as I don't seem to have them anymore, although as a retired person often idling mentally, I probably wouldn't recognize diminished logic anymore.

Good Luck!

Thanks Russ. I'm just honestly thankful that I found something to show my doctors. Could you imagine trying to explain that? They look at me like I'm not making any sense. Have a good night.

This is what they mean "a picture is worth a thousand words". It makes me dizzy to watch, I can't imagine having to deal with this! What a fine example of taking as much control as possible to help further a diagnosis. Take Care!
Aloha,
Marina

We tend to have visual migraines in our family, including episodes of complete blindness for my mother and splintered windshield images for me, and one of my daughters has hit that age of migraines as well. But I also have much of that illusion when my MG is acting up or when my eyes feel swollen after IVIG. It is just not persistent under any of those circumstances. I had not considered migraine as contributing to my visual problems after IVIG, but it would help explain why they sometimes get worse when everything else is improving. Thank you for sharing. b.

Yea, thanks everyone. From what I understand it can be a brain, eye muscle, or vestibular problem. That's a lot to look into.

I hope my earlier message wasn't too negative, I didn't mean to be discouraging about the potential of a migraine issue underlying your visual issues. Guess I've run into the wall of thinking I had the right answer one too many times to see you have your hopes dashed.

I think it is wonderful that you found a resource that explains what you are seeing, it should be really helpful in communicating with the doctors. I still remember one moment with the migraine specialist when I was trying to explain a visual disturbance and I could tell he had a bemused look on his face. After I asked him he said he had no idea what I was trying to explain, but when i drew a real crude picture for him he immediately got it. Oh well, guess as patients we don't always know the right words to use.

Good luck
-Willie

I am so happy to hear that you have found something to show your doctors. That is going to be very helpful for them to have. You are inspiring with your research and your will to find a solution. You are awesome! Please keep us posted. I send you a message also.
Have a good Thursday.

Aloha,
Angie

Thanks everyone and I'm not offended Willie :). To be realistic the feedback is appreciated. It doesn't make sense to me to have non stop symptoms like this for 4 months. Praying for some answers in the future :) .

Strizzlow, question that might or might not help, do you tend to take analgesics (i.e. pain killers like ibuprofen, etc.) more than a few times a week? If so it is possible that you are experiencing analgesic rebound which commonly effects migraineurs (sounds like the tendency runs in your family). Individuals that are prone to migraines are also more susceptible to developing analgesic rebound. In simple terms the use of the analgesic temporarily reduces symptoms, but then causes them to return more quickly until the next dose is taken. Almost like a drug dependency, but not as insipid. This condition can cause symptoms to drag on much longer than they should and it often requires medical help to break the cycle. Just throwing this out as a possibility. I've had to deal with this issue more than once.

There are also several more uncommon migraine conditions in which symptoms can persist for weeks or months. If you would like I can send you some resources that might be helpful. I've learned a lot in the last few months as the doctors thought at one point I might have hemiplegeic migraine, which is a rare migraine condition that causes bouts of one-sided body paralysis.

-Willie

My husband and I have both had the visual part of a migraine. Mine have been brought on by eating marinated artichokes and by sharp contrasts between light and dark. It resembles for me the aura before seizures and I not only have visual distortions but a feeling I am dreaming. Complete dark for 30 minutes will normally take that away.

There is another family member who has had a visual distortion called Irlen Syndrome. This can cause words on a page or lines on a walll or anything else to appear to move or shake. According to an educator I talked to years ago about 14% of the population has this but often does not realize what it is and it can cause a problem with concentration, depth perception, learning and vision. They prescribe colored lenses to correct for it. Fluorescent lighting makes it much worse as do whitewalls and some other things like reading off white paper. Many people in fact think they have a learning disorder only to find when they correct for this they have no problem.

i just wanted to say that the symptoms of both can be similar.
Good luck on finding exactly what this is. You always research things so deeply I am sure this helps when you approach doctors.

Thanks for letting us know what it was. It wasn't MG? Amazing you figured it out and the neuro at the Mayo. I guess it goes to show us that we are our best advocates.

I am glad you figured it out.

To clarify the neuro ents dont know, could be ears according to university of Florida doc but neuro ent in west palm said nrain but all mris and ct scans are clear. Semicircular canal dehisence ruled out with a speciat ct image of temporal bones. Neuro muscular spec at mayo doesn't know and neuro opth at mayo said unlikely. Neuro opth at west palm said not mg but possibly stress or anxiety. Lol at that. neuro in vero beach wasnt sure and said to research ms bit all tests are negative for that. My neuro says mg and retunal spec said retiba is good. Im going to bascom palmer and requesting scleral coil test for eye movement and weakness. This will tell us some good answers that eye docs cant see with their eyes. so still limbo. Only blood test confirms mg everything else is fine inclufing tepeat emg at mayo , evoked potentials, lyme, heavy metal testing, and all other autoimmune and vitamin deficiencies.