similar symptoms?

[Sarah MacKay]

Hey guys! 

I was just wondering if anyone had the same symptoms as me because Ive never met anyone who knows what AIWS let alone has the same thing as me. 

Its been happening for as long as I can remember, like since I was very little (4y/o) and it still happens to this day and I'm 20. My symptoms include: When im touching objects sometimes they feel either super big, or super small - my hands either feel really big or really small - my brain feels like its shaking and/or spinning. When I was little it used to happen only when I was sick, but as I got older it started to happen all the time. My biggest issue is that like I used to be able to get rid of the feelings by holding on to something and staring at it and telling myself that it is its regular size but its not working anymore!!! 

anyone out there? 

[Judy]

Hi Sarah

When you say "my brain feels like its shaking and/or spinning", do you actually get vertigo, with the room tilting or spinning?  My AIWS was migraine related and I also got migraine vertigo, so I occasionally had bouts when things began to spin and I had to lie down or sit for a while because it was difficult to walk.  When it happened on holiday, I had the sensation of a whole marina swinging round and it was so disorienting that I began falling over!  The thing is I tracked the migraine down to various food intolerances, particularly grains and dairy, and realised that the vertigo was happening when I accidentally ate gluten.  In the case of the marina on holiday, I was eating at a pub and hadn't realised they had put wheat flour in the potato salad. 

I was clear on a biopsy and blood test, so don't think I'm Coeliac, so it's probably gluten sensitivity, which is being linked to a number of different neurological disorders - including migraine, peripheral neuropathy and ataxia.  I also need to be careful to have lactose-free milk and I keep to a diet somewhere between Paleo and the Mediterranean Diet.  In my case, I do fine with oats and wild rice, but everyone is different in what they can tolerate, as it depends on your ancestry. Might be worth checking out whether you have any problems with gluten/other grains such as corn and lactose/dairy products. 

I have my migraine and vertigo totally under control through diet, but unfortunately not the AIWS.  I used to get it intermittently with bad migraine attacks, but since 2003 I've had it permanently all the time.  As you can imagine, living permanently in a "hall of mirrors" aint too much fun.  Do you have migraine too, or is it related to something else like the Epstein Barr virus?  Let me know what you think about trying changes to the diet.

 

Judy