I didn't have AiWS as a kid, have it now.

[Emily Hogg]

Hey

I just wanted to say hello. 

I didn't really know about this syndrome until my neurologist discovered it recently. I had migraines as a kid, but never any of the extra stuff.

I got sick when I was 19 with what has now been determined to be chronic migraines, with Alice in Wonderland syndrome over the top. I'm now 22, so that took 3 years a lot of testing, as my migraines lapsed a few times.

It has been described to me as 'you basically always have some kind of migraine going on'.

In terms of symptoms, I've pretty much had it all and I get symptoms every day, I live a relatively functional life, but I do take daily medication for migraines, otherwise I can't function.

Most of my stuff is visual, and I've had everything from lack of facial recognition to body perception symptoms to colour issues, visual snow etc.

But yeah, hello, any questions please feel free to ask - I'm more than happy to answer them. What I've had sorta overlaps with migraine aura symptoms and a wider variety of symptoms to like stuttering and body temperature issues.

[SomebodyInaCity]

Hey! Your description of what you have sounds a lot like mine. I've been having an
onset of aiws since I was 16, and basically now I'm at the point where I'm always having
visual snow, and random splotches of color, or something like that..

I wanted to ask you how medicine helps you. I don't have medicine yet, and when i'm under a lot
of stress I tend to just be completely paralysed while having illusions, i can hear other people but
I can't react. Sometimes there are times when I can move during this but it all goes really slow,
and that's when I would stutter as well. Do you also have derealisation?
My GP thought i was schizophrenic when told her about the illusions :p

Anyway welcome! I'm new myself but since there's hardly ever people around, I guess
I'll have to do the welcoming deed.

[Ann Reynolds]

Regarding your stuttering. I developed that too, but when the insurance companies refused to pay for my migraine medicines and forced me into other methods of fighting my migraines without using prescription drugs, the stuttering stopped within a matter of weeks. I now use the old methods I used back in 1970, plus CBD oil and avoiding triggers and perfumes. Unfortunately this means I have to isolate myself from the general public. Even walking the dog outside is a danger zone thanks to the new super strong dryer sheets, but there's nothing that can be done about that except to move out into the country. Anyway, you might want to talk to your doctor about different migraine drugs. Namenda seemed to be the problem drug for my stuttering. Good luck. Oh, BTW, I still have plenty of migraines, but at least I'm saving money and I can talk again.

[Emily Hogg]

Hey

Sorry for the delay in response, I've actually moved overseas.

It took a lot of experimenting to get the meds right and sometimes they dont work. I still have all the visual stuff although I'm used to it now cause I've had this for 4 years.
I take Topamax and Sandomigran everyday and then I have 2 triptans: Naramig (naratriptan) and Relpax (Eletriptan) for when I get full migraines. Again these dont always work but they are enough for most of the time.