form of seizures that stem from multiple concussions?

[khartley]

Ever since I can remember I've been having episodes of Alice in Wonderland syndrome, though I just recently found the name and that it happens to other people. I used to get a metallic taste in my mouth with it but don't anymore. When I was little it was just the ceiling falling, teeth and tongue would feel grossly out of proportion. I never told anyone. I figured they would think I was making it up. Didn't have it happen much for many years, now within the last year been getting them more frequently and intensely, not just as night but during the day too. Frequent intense headaches, but not in any sort of pattern with aiws. With every day it gets increasingly more difficult to focus on tasks and finish them, remember things, and not lose track of thought mid sentence. I have to really concentrate to actually hear and comprehend and remember what someone is telling me mid conversation. Another thing that has been happening to me for a while that I think is connected somehow is random vasovasal stimulation. No pattern to it either, has happened at work, home, middle of the night, while driving.... I get an awful pain in my stomach and feels like I need to get to a toilet asap (whether I actually have to go or not). I get really disoriented, sometimes pass out, always rain sweat out of every single pore on my body, literally dripping and running off of me, my clothes are soaked within minutes. The pain is more intense than child birth. I have no idea how long it lasts, I'm apparently in and out of consciousness. The boyfriend said I looked like a zombie that I looked at him but didn't see him, then hit the floor and was out for five min. While awake I'm someone delirious. I swallowed my pride a few weeks ago and saw a mental health professional. I told her everything, and apparently I blew her mind. She had no advice other than to go get an MRI, and she said she would research my symptoms since she'd never heard of them. She probably just thought I was on drugs. That's what my mom thinks. But I have had 3 concussions starting at age 3 taking an 8ft fall to the head and being unconscious for 3 hours, the next at age 14 and was out for hours that time too and couldn't remember what happened for about 10 years.Taken numerous other hits, all on the right frontal lobe. I also read something about A- blood type being a possible contributing factor, which I am.

I'm just trying to find help or some answers, how to go about founding a treatment or way of coping. The episodes seem to get a little worse every time, and the last one really freaked me out. It lasted about 6 hours, part of that I was at work (and I should have never drove there, I was worse than a drunk driver).

The particularly odd thing about my latest episode is that normally I just get the sensory part, maybe a little visual. Legs and arms growing long and skinny or getting bigger and weighing a ton, teeth, tongue and eyebrows freakishly over or under proportioned... But this time it was all of it to the extreme. Started when I was sitting in the basement and the walls started to breathe. So came upstairs to take a shower and everything in the bathroom came alive, and many things were see thru or in 3d. There were even small lizards crawling on the shower curtain. And it was snowing in the bathroom. It was so overwhelming I ended up just standing in the shower with the towel over my eyes for forever. Another odd thing is the bf heard me mumble that the water got cold so I shut it off. But thinking back I don't think it was cold, but maybe felt like it was....
I tried to walk to the bedroom to lay down and couldn't even go in the room because I saw the window and curtains coming at me, I know that sounds crazy but they were and it just looks so real. So I sat on the couch, watched the dehumidifier dance and then start to melt. Watched a plant trembling. Looked outside and the stairs were a river. Accidentally looked at myself in the mirror and I looked out of proportion and scary. Bf looked scary too. My clothes didn't feel like the correct material. Bf got me into bed and I covered my head with the blanket and it was transparent and had a neon green glow. There were neon green streaks of light shooting around for a while. White misty wind type ghost things swirling around. If I closed my eyes the lids became transparent. Shadows danced. Stared at stuff till morning, then couldn't eat breakfast cause my raisin bran was moving, like if there were bugs under it. Had to go to work and should have never drove, I didn't realize my perception was so messed up, was worse than being drunk. It finally went away at work, but not before the bathroom walls closed in on me, and some metal decor trees had their branches swaying in the wind among other things. It has happened to me for brief periods at work before. One time water started running from the seam between the wall and floor, clothes taking on a multilayer 3D look, spiders started crawling from everywhere at one point, little transparent ones, so so much more. Sometimes I inaccurately start to here a noise as something different, like dishwasher will turn to fuzzy radio music. I wish I could draw a picture to accurately represent what happens in the sensory and visual aspects. It can be so freaky. I know the things aren't real but they look real, feel real and are so detailed that sometimes i have to get a close look to make sure it's real. I've even gone around a corner to see a person crouching there, and I know it isn't real but it startles me and I have to double take but of course was gone. This morning I bent down to say hi to my bearded dragon and he turned his head and his eye was missing and I jumped back but quickly reassured myself it wasn't real. I would say it was like being in a real life fun house, except not fun at all. I think everyone that watches me react to something they didn't see is probably thinking I'm crazy, on drugs, or making it up for attention or something. My boyfriend says just shut the door! You control it! But I can't.
On a note that I think is also related is that my brain seems to get foggier, I have a harder time remembering things, or focusing on conversation and actually being able to hear and comprehend what the person said.
I am not sure what direction to turn to try and cope with these. Maybe more just wanted to share my story with a group of people who might believe me. I am working hard to understand this and figure out why it happens, why its more often and more severe, and how I can cope or maybe even stop it. My friends joke and say they want to 'trip' too, and to give them what I've got! No one takes me seriously and it is so frustrating!
Thanks :/

 

[Trippywillow]

I have the same aiws symptoms, started in childhood, flared up again now Im an adult, I close my eyes and see shapes, patterns, scenes like from someones life and faces, walls feel like they're closing in as my bed gets bigger, and walls moving away while my bed gets smaller (that was a constant childhood one too). Also get the memory issues, someone can tell me something and I swear Im listening, then I'll have forgotten two seconds later. Epic brain fog, nightmares, de ja vu, things shrinking, cold and warm patches on my body that appear and disapear just as quickly, constant pain in my legs and arms and weird pattern of painful headaches as well as sensory auras (last night had awful tummy ache which felt like it was rising if that makes sense? Then all I could smell was dettol..no dettol in the house!?) and tummy pains. Its doing my head in!!
I totally relate to you feeling everyones judging you, I've confided in one or two people and you see in on their faces whilst you're explaining, they either think you're crazy, drugged up or out for attention, when none of the above are the case!! Thats why I turned to this group, no one here judges you like that, they (we) all understand and sympathise and will offer love, support and advice as much as possible.
You're not alone in this, I completely understand *hugs*

 

[Trippywillow]

:hugs:

 

[Nakamova]

Hi khartley, welcome!

I think you should ask your doc for a referral to a neurologist and ask for an EEG in addition to the MRI. What you describe definitely sounds like a neurological issue -- whether it's migraines or partial seizures or both -- especially if you have a concussion history as well.

AIWS, deja vu, autonomic symptoms (such as the sudden sweats), epigastric rising (that's the tummy ache that rises) are all well-known (at least to this community) as simple partial seizure symptoms. Those symptoms can arise from abnormal brainwaves in the temporal and occipital lobes and surrounding areas. And though it would be nice to think that you can control them, that's not usually the case.

It's a good idea to track your symptoms in a diary. Make a note of the time of day, how long they last, what form they take, if they change during the episode, etc. Don't worry if you can't remember the exact details, just give it your best shot. If you can also make a note of things like when and what you've eaten prior to an episode, if you're stressed in any way physically, physiologically or emotionally when they occur. Hormonal fluctuations can sometimes play a role, so track your cycle too. The idea is to look for secondary triggers/stresses that might be involved, hopefully ones that you can avoid or minimize. The #1 trigger is fatigue, but all sorts of things can turn out to be triggers: flashing/fluorescent lights, infections or illnesses, dietary sensitivities (caffeine, MSG, gluten, high-carb intake), metabolic issues (dehydration, electrolyte imbalance), etc. The diary can help both you and your neurologist get a handle on what's going on.

Best,
Nakamova

 

[Cint]

I do agree with Nakamova. But, IMO, the symptoms you describe do sound like Simple partial/complex partial seizures. I suffer from CP seizures and have auras (the same as a simple partial seizure) that are sometimes visual, but for me they mostly auditory. I've heard people whisper my name right before the seizures and one time I did see my arm floating in space. These are the auras for me.

And since you have suffered from 3 concussions, you do need to see neurologist and as Nak, said, keep a diary of your symptoms and tell of your history of concussions.

Good luck!