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Alice in wonderland syndrome

  • By anovla

    I’ve started experiencing many strange sensations all summed up to Alice in wonderland syndrome (AIWS). At first I thought I was going crazy. I thought it was some kind of weird type of hallucination. My first three episodes were just days apart not lasting more than 5 minutes at a time but as short as 30 seconds. They were extremely intense episodes. The first time seemed like I was mentally and physically paralyzed for the duration. The second time I had the most intense euphoric feelings I’d ever had for the duration. The third time I felt like I was high for the duration. First and second episodes I felt my entire body from my skin to my bones and bones to my skin grow as big as a giant while simultaneously shrink as small as a doll. The third time I saw the screen on my phone grow like it was projected on the wall though my hand holding it was normal size. During all of these episodes and the episodes I still do have, I know they are not real. It’s as if my body is playing tricks on my mind. That’s the strangest part about it..as it’s happening I know it’s not happening..it’s the oddest feeling. Those three episodes were followed by my most up-to-date worst migraine so far. 3 doses of maxalt in 24 hours (2 doses taken before pain set in) did not relieve any pain. I wound up in the ER getting a cocktail. My AIWS episodes aren’t that intense anymore but still frequent. I also have episodes that have only involved hands or feet with the sensations without the visual aspect too but mostly it’s whole body or a phone, computer, or tablet screen will visibly grow or shrink. Neurologist did EEG to rule out temporal lobe seizures. It was negative..neuro still seems baffled though he tells me it can happen with migraines. Anyone else experience this? I’m begging y’all!! I can’t talk to anyone about this. Most of my family and friends still think there is no way a migraine can be so severe to make you throw up or loose your balance or have vision impairment..they assume a migraine is purely headpain sensitive to light noise and smell and that’s it. I have NO ONE to talk to!!!

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  • By Nancy Harris Bonk Moderator

    Hi anovla,

    Thank you for sharing your story with us – you’re in good company! We’re happy to discuss this with you.

    I am sorry to hear you don’t have much support at home, but you’ve found it here. Having a good support network is important when dealing with any chronic illness.

    Good to hear you’ve spoken with your doctor about this and your EEG was normal. I do wonder however, if it’s time to see a doctor who is a bit more educated in migraine disease and headache disorders. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as epilepsy, multiple sclerosis, stroke, Parkinson’s and others. A doctor who is board certified in headache medicine (different than being certified in neurology) is trained in treating headache medicine. Take a look at this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/
    and https://migraine.com/blog/really-find-headache-specialist/.

    You can read more about AIWL in these articles; https://migraine.com/?s=Alice+in+Wonderland&submit=Go.

    I hope this helps!
    Nancy

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  • By llama60

    Hello, I had a similar experience after taking Maxalt for the first time. I was experiencing auras so took a maxalt and felt like I was having an out of body experience. I started to panic and picked up my mobile to call someone and it kept moving away from my thumb as I tried to dial. I got really dizzy and disorientated and had to lay down on the floor because it felt like the room was stretching and wobbling. It probably was at its worst for about 20 mins. Later after going to hospital they decided it was a bad reaction to Maxalt. I’ve never taken it again.

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