Possible AIWS - weird visual illusions
Hello, I've never posted before, but am feeling very alone. I tried posting on a migraine subreddit but got nothing helpful. Apparently of the thousand plus viewers of my post, nobody had had my experience! I'm trying to a.) not feel so alone, and b.) determine if it is worth mentioning my symptoms to a neurologist if I don't really want to be on drugs.
I've had migraines for 18 years, typically with pretty debilitating auras. I never had AIWS as a child that I recall. My migraines got progressively worse through my 20s, and that's when the visual hallucinations began. I get a couple major episodes per year, and sometimes just minor ones that aren't super debilitating. The reason I think they may not qualify as AIW is that I dont have size distortions. I've only seen one other person in a very old post mention they see things moving and swirling, as I've experienced.
Incidents include:
-the sidewalk and street appear to bulge up to meet my feet as I walk
-see only certain colors as excessively bright
-see shadowy darting movements on the peripherals of my vision (this has happened to varying degrees on multiple occasions)
-not see a whole person standing in front of me talking to me - i was not 'blind' from the migraine - my eyes were working fine, I just didnt perceive him at all and had to be told later i just walked past this person
-disappearing words on a page. While reading I can see the paper clearly, just not certain words on the page. Its not blind spots - its missing words, with smooth page underneath, that I logically know are not actually missing.
-disappearing words from road signs. This one is scary. A STOP sign was just a red octagon
-picasso experience - I saw someone's face as cut up and disjointed. Everything else was normal - their body, the rest of the room. It only lasted a few min.
-aisles at the grocery story seeming to tilt or bend inward
-the ceiling and walls in one corner of a room pulsing and swirling
-a sense of my whole body being lifted up to the ceiling while still seated.
-a feeling my spirit/awareness was floating on the ceiling while my body was left down walking around like normal on the floor - some sort of extreme dissociation. (This happened after taking CBD oil and I think it triggered some sort of strange reaction I was apparently already prone to)
Does this sound like Alice in Wonderland, or something else? Is it worth telling a neurologist? I live in a small community where docs typically dont think outside the box.
thank you for sharing what you are experiencing with us. Your symptoms do have that AIW theme to them for sure. It is important to note that not everyone will experience attack symptoms in the same way. Migraine disease and its symptoms can be very individualistic. You might have also experienced sensitivity to the CDB oil you were using at the time as well. I know there are many different types/formulas of CDB products. Some contain THC and others do not etc. We have a number of articles, discussions, and videos on AIWS if you have not already checked them out. Here is a link:
https://migraine.com/search?s=Alice%20in%20wonderland%20syndrome
I understand not wanting to be prescribed medications. They can have some unwanted side effects and some can be expensive. I would however strongly recommend that you inform your neurologist or specialist about what you are experiencing. Getting on to an effective therapy regimen is important and there are many you can try that are not medication-related. I hope this helps you feel you are not so alone in what you are experiencing and remember we are always here for your support whenever you need it! Warmly, Cheryl migraine.com teamThank you so much for answering my issue! It means a lot to me. I made an appointment with a neurologist but not sure if I'll keep it. I dont have one i work with regularly and the couple I've seen in the past were pretty uninterested in migraines. Not a lot of headache specialists in my area. I'm not sure how much they could do for me really. But I'll think it over and might keep the appointment. I'm having a lot of medical bills right now so it might be one to move off to the future. Thanks again!
and - Hi there - just wanted to pass along this resource that has a link to migraine specialists in the US- you can enter in the state where you live to find doctors near you: https://migraine.com/blog/looking-for-a-migraine-specialist. Please let us know if we can help you with this. Warmly- Holly -migraine.com team. thank you!
YES! It sounds like a wild crazy ride thanks to AIWS. How unfortunate for you that you weren't diagnosed before the episodes became really wild. I was lucky, mine started as a child, with the exception of a few episodes when I was really young, most of mine were just minor and I call it seeing "little people". Everything looked like furniture in a preschool classroom. But I adjusted and function perfectly fine with it my whole life, keepingit all to myself. Telling nobody. Luckily for me my new neurologist looks for people with AIWS and asks all new patients if they have problems with perception. Therefore Ididn'tfreak out when, about 2 years later I had my first wild episode where my legs shot out 6 feet and my fingers grew 3 ft and the bed in front of me grew up 6 feet high. It freaked me out at first, but I quickly remembered what I'd read about AIWS, and I just sat back and enjoyed the show. It lasted about 20 minutes. Sometimes migraines follow my episodes, but not always. However, interestingly my migraine auras became freaky about the same timeas the AIWS episodes. I started losing my vision completely in 5 seconds and words would race across the pages when trying read.. And I had big blank holes in the middle of pages too. So maybe those were AIWS rather than auras. Or maybe the AIWS episodes are just a version or auras too like my neurologist thinks. Thanks so much for responding! I think since I didnt have them as a child I am actually maybe the lucky one, because I can keep my cool now as an adult but probably would have freaked out a lot more as a child! It sounds like I'm a little odd in that regard, that usually people do have incidents as children. I was OBSESSED with Alice as a kid (must've felt some kind of strange affinity even then!) and had an Alice themed purse in college, BEFORE all this started happening oddly enough- I'll have to look into incorporating the theme in my style again, ha! That episode you describe having sounds very scary. I can laugh about some of mine now, but at the time they're sorta terrible. Mine are the same as you describe- sometimes followed by migraine, but sometimes on their own. That's why I was hesitant if they were necessarily a migraine type or aura type. I was confident I wasn't schizophrenic or something, but conscious of the fact that's how it would likely sound to most people. Does your neurologist ask about AIWS just out of personal interest area of theirs, or is there a different way that they approach treating people with it, that they screen for it?
I think he looks for "us" just to be helpful. He's never tried to put me on any extra medication. He likes to be updated as to any new weird episodes, but mainly he just treats my migraines. Like I said earlier, there are some sad stories about people who had AIWS and didn't know what it was, so I guess he's on a personal mission to share information. He told me to research Todd's Syndrome and I learned a lot. Personally I don't like it when people claim to have AIWS just because they were on drugs. To me that doesn't count. I also think that people with fevers who are just dilerious shouldn't be added to the list. But that's just me. I guess having had it for so l think we should have better defined parameters. But again, that's just my opinion. 
and
Thank you both so much for being so supportive of one another and our entire community! We're so glad you're par to it!
Wishing you both a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
Me again -- I think that makes a lot of sense. Like, just because you have difficulty walking doesn't mean you should go around saying you have MS or cerebral palsy, right? AIWS is its own unique syndrome and should be treated that way. -Melissa, migraine.com team
