Has anyone had distorted vision before other symptoms of TIA/stroke?

New to this area( am in discussions for PMR)Yesterday i was working in my yard and had something weird happen! My vision was jumping! Only lasted a few seconds but scared me I stopped what I was doing and went inside drank some water and ate a protein bar and called my eye Doc. She did lots of testing and found nothing wrong. She recommended follow up w my Family Doc and to get US of my neck. Also said it could be inner ear, or I might need to see a neurologist( I also am followed for a small menigioma!! Doc appt today🙏 and good luck to all☘️

@b13moore
My experience was identical to yours. At the end of May, I experieced the distorted vision in only one eye; that night I researched the symptoms and decided I had had what was referred to as an "eye" stroke and immedicately drove myself to the ER. They did a CT scan and discharged me with low dose tatin and labeled it a TIA. Within the next week, I became disoriented, because I lost a great deal of depth perception. Because I was unable to obtain an appointment with a neurologist, I went back to the ER and after an MRI was diagnosed with a stroke in the occipital lobe. Like you, I have found it very difficult to obtain treatment because I have noone of the other standard stroke symptons; however, my vision has not restored itself although I am better in familiar settings. Another added barrier to treatment has been obtaining an appointment with a neruologist so I have no idea if the medications I am on are correct. They were prescribed by the ER doctors but I have little faith in them as after doing more research I realized they should have put me on anti-clotting medication. I am not on 40 mg of statin and Plavix (anti-clotting) 75 mg daily. My personal research indicates I will continue on these the full 3 month time frame. I have constant headaches, which is uncomfortable and frightening since the TIA was preceeded by a lingering head ache and now I cannot take other medications to relieve them. I would not describe my headaches as a migraine; they are just a continous dull ache.
Interested to know if others with this type of stroke are/were on the same medication protocol, if you recovered more vision, and what the time frame was? Any therapy regime that was helpful?

My symptoms were exactly the same but I never experienced any other physical symptoms so mine was not diagnosed immediately and I was discarged from ER with only a mild dose statin; within a week my vision deteriorated and I lost a great deal of depth perception. It has been extremely difficult for me to obtian medical help as most providers don't deal with the vision symptoms. Any advice is appreciated

Hi @kristyinoregon
Yes, hard to keep track of everyone’s story. Sorry to hear about your diagnosis. I had to look it up. There are so many rare disorders.

I’ve had some low BP issues too caused by one of my cancer meds. It’s especially low when I’m in afib and I have to be careful when I first stand up and start walking. I’ve hugged a lot of walls and furniture. My fading vision and dizziness from that is completely different than the fugax and pixelation vision episodes. I have no doubt mine were TIAs as a result of having just been in afib each time which can create clots. I’ve discovered a major food trigger for me with afib and that’s tyramine so I’m hoping by avoiding those many many foods that I can avoid future afib episodes. So far so good.

Thanks for your response. Good luck with your battle. Rare disorders can be extra frustrating so I feel for you. I have some rare disorders myself. Blessings to you.

Hello Zebra,
Wow, sounds like a very scary fall. So glad you didn’t get hurt, surprisingly. I have had the black when standing, accompanied by a heaviness or tightness that goes from the top of my head down into my chest. Lasts a minute or so, then fades gradually. I don’t fall, there is time to stop and steady myself. This happens daily. Hoping BP meds will help with this…. Just stepped up to next level on the dosing today.
Your “pixelation” and ER experience sounds very similar. It is frustrating that they are so quick to dismiss you. I do have a diagnosis of CLIPPERS which has caused lesions in my PONS. I am on Prednisone and Cellcept. I have also recently started taking blood pressure medication. Between side effects of CLIPPERS meds, new BP meds and the lesions in my PONS, it is very hard to know why my body is doing these days.
Do you have a diagnosis yet? Sorry if you already mentioned it in a previous post. So many posts, so many people. Kristy

From what I found out the protocol is to give low dose aspirin and an anti platelet drug for three months post TIA. If it happens again while on that protocol then they would explore the possibility of a stent.
If it does not or you are past the three months then the protocol begins again. So now that I have finished the anti platelet I am again not eligible for stents, I believe.
If anyone know different…let me know.

@esque
Sorry to hear that. So scary. Is there something they can safely do to open up that M1 vessel? Stent?

My TIA is from a severely stenosed M1 vessel not AFIB. They did see that on the CT scan. They suspected an ocular migraine but after the CT thought I might have had a clot that cleared once my blood pressure rose because I was scared once my face started to droop and I was unable to speak properly.
It happened again a few days ago but I am still on aspirin and was also taking aleve so it never went past the eye issues.

@kristyinoregon
Glad it wasn’t a stroke but a CT or MRI won’t pick up on a TIA unless it’s in progress.

With my first incident my vision became completely pixelated like yours and colored. Couldn’t see, so confusing, thought I was having a stroke, quickly did self-tests for stroke and then vision was suddenly normal within 30 seconds. No other symptoms. An NP friend convinced me to go to the ER because she feared I would have a stroke knowing about my afib. Waited 3 hours, busy ER, finally took me into a room like a closet and the doc said, let me save you time and money. You stood up too fast, you’re fine, go home. He was busy.

Well I was in the kitchen when it happened and it was nothing like things going black for two seconds from low BP and standing up too fast. That has happened a million times. I also was already standing when it happened.

After I got home from the ER, I was standing in my bedroom and suddenly just fell backwards. Not dizzy, not off balance, no warning, didn’t bend as I was falling, didn’t try to catch myself. I fell like a tree in the forest as if someone just flipped the off switch on me. No control. It was the weirdest thing. Luckily I didn’t hit the floor or hard furniture but fell back mostly into my recliner and just about broke it I landed so hard and fast. I thought, “Nice catch God!”

My neurologist suspected ocular migraine. I didn't make the afib connection till I had two more incidents. In hindsight, I believe the pixelation and falling were both TIAs post afib. Also, the short duration and sudden onset and ending are more indicative of a TIA than ocular migraine.

Good luck with your situation.

Yes, I have.
I was initially diagnosed with CLIPPERS Syndrome on the second of May. However, the medications for it have not lead to any improvement of the lesions in my PONS. So, now the docs will look, again, at differential diagnosis.
That being said, I had visual distortions, all very brief, 30 seconds to 1.5 mins. This looked like everything slanting to the left, then everything looked pixelated and all the little pieces kind of vibrated… then by a min later it stopped and I felt a bit foggy headed and tired. Some with CLIPPERS get double vision (diplopia) and some get oscillopsia (kind of like I described, though it probably varies). Of course, CLIPPERS is not the only syndrome/disease that have vision changes of distortions in their list of symptoms. While I do not yet know what my diagnosis is, I can tell you that my MRI reports have not once indicated signs of stroke.
Kristy in Oregon.