julieph85 Posted January 11, 2012 Report Posted January 11, 2012 This is weird and I feel embarassed talking about it because it is so strange. The other day for the entire day some people's faces looked weird to me. I thought that I didn't recognize my face in the morning, like I looked different or strange to myself. Later that day I thought the same thing of one of my twins and than my husband after that. The following day while driving I suddenly had no idea where I was. For about 10-15 seconds I literally had no idea, it was like I had never seen it before even though I have driven on that road hundreds of times. This gave me a horrible panic attack and a few seconds later I remembered. A similar thing happens to me almost every night. Usually during the first hour of sleep I will wake up suddenly and be extremely confused. I won't know where I am or who my husband is, like I literally can't remember his name. It takes me about 5 to 10 seconds to remember and then I fall back asleep. My only thought is that maybe this is caused by reduced blood flow to my brain? I don't know why it would also happen when i'm awake though and driving... it is so scary and the way it has increased in frequency makes me worried something is wrong with my brain. I should add- usually when this happens I feel extremely tired and lethargic, almost sedated. Quote
hilbiligrl Posted January 11, 2012 Report Posted January 11, 2012 Hi julie..... I saw this and was like 'ive sooooo got to post on this'....... i have these same spells..... and here lately, more frequently...... i can wake up some mornings and literally have no memory of days before and up to weeks before.... its just not there, no matter how hard i think and try to remember, it's gone...... scares me to death. And i have the 'spells' you describe.... i have even called my mom many times crying due to either im driving and all the sudden im lost and i know every road in my town cuz i am also a tow truck driver...... but i'll have to pull over..... and i have no idea where i am.... or who i am sometimes.... its like instant amnesia and i do freak out. yes, sometimes when i look at my kids it's like i've never seen them before in my life.... same thing with other familiar faces..... with this i get total confusion, panic, no clue where im at, what im doing, where im suppose to be...... I also have episodes that when im reading or typing.... all the sudden everything looks foreign to me. The words, letters, everything just looks like i have never saw it, don't understand it, can't read it and it just looks like a jumbled mess of a foreign language..... then sets in some massive confusion, even when looking at my hubbs and im like...... i've never seen him before but i know that i have and all...... and many times my speech is affected even more so and i stumble through words, sentences worse than usual. Your 'episodes' sound so much like mine. Over the past year and a half it has increased in how many times the episodes like this hit and i actually have been discussing it with my doc and psychologist too these past 2 weeks. I - really - get - scared.... when this happens.... and i have no earthly clue what is triggering it or causing it. That confusion..... omg..... it is unreal, isn't it? And my short term memory is so shotty that it's pathetic..... but the thing is, i can't get use to this one symptom.... it always catches me by surprise, then im all confused massively, and nothing makes sense, i know nothing of anything. Ugh.... im so sorry you do this too, but it is a bit comforting to me to know that i am not the only one who does this. And i can't get anyone to understand when this happens that im totally unfunctional....... and how scary it is for me. Wishing you the best dear tennille Quote
icesktr189 Posted January 11, 2012 Report Posted January 11, 2012 Google depersonalization or derealization... I get these too and they can be really scary. Quote
julieph85 Posted January 11, 2012 Author Report Posted January 11, 2012 Thanks Tennille! I also feel better to know that i'm not alone Dani- thank you too! I actually have some expereience with depersonalization because I've head generalized anxiety disorder since I was a teenager. I would say that these episodes are definitely different than the depersonalization i've experienced before. When I have a panic episode and depersonalize it feels like i'm not in my body- like I have no sense of my body at all. This is different. I can still feel my body and feel like i'm in it, it is just that I have no idea where I am or who I'm with. It also only lasts 10 to 15 seconds where depersonalization would last up to an hour for me. It's also like Tennille said, where I feel massively confused during and after an episode. Quote
hilbiligrl Posted January 11, 2012 Report Posted January 11, 2012 dani!!! yes, right on!!!! i do that as well, in addition to these spells...... julie, i do that too.... i can discern the difference between one of these amnesia spells and the depersonalization/derealization..... it's juuusssssst almost the same, but there's something 'off' about the amnesia ones and the severe confusion. But i do depersonalize and derealize due to the severe anxiety and panic issues throughout my life.......so glad you mentioned that dani!! great way of describing these spells..... or that's what it could be, but maybe the DYS/POTS changes them up a bit???? Quote
icesktr189 Posted January 11, 2012 Report Posted January 11, 2012 What was crazy was I was having those depersonalization spells WITHOUT any type of anxiety! I also get the confusion and I just call them brain fog... I will forget names, locations, what I am talking about mid sentence... ect. Some times its so bad I forget my own daughters name. Stupid POTS LOL Quote
hilbiligrl Posted January 11, 2012 Report Posted January 11, 2012 awe man, i do the exact same stuff..... everything you mention.... and yea, these spells come one without a trigger or anxiety or panic... they just 'pop' up and happen out of nowhere..... my poor kids have to finish my sentences and tell me the simple words im trying to say.... and oh my, how many times have i forgot their names and the names of really anyone i know???? too many to count!! thank you, both of you, this thread had pieced together/confirmed more stuff for me, and that always makes me feel better What was crazy was I was having those depersonalization spells WITHOUT any type of anxiety! I also get the confusion and I just call them brain fog... I will forget names, locations, what I am talking about mid sentence... ect. Some times its so bad I forget my own daughters name. Stupid POTS LOL Quote
julieph85 Posted January 11, 2012 Author Report Posted January 11, 2012 What explains the face thing though? I feel like it's strange that I had the driving epsiode the day after I didn't recognize myself or several other people. Let me clarify that too- it's not that I didn't know who they were that day (though I often don't know my husbands name in the middle of the night) , it was that their face looked weird to me, like something was wrong with it. I kept thinking, why do i look so strange to myself and what is different about my daughter and my husbands face? It was so weird and scary and only lasted for that day. The wierdest was looking in the mirror and not recognizing my face, very scary. Quote
hilbiligrl Posted January 11, 2012 Report Posted January 11, 2012 What explains the face thing though? I feel like it's strange that I had the driving epsiode the day after I didn't recognize myself or several other people. Let me clarify that too- it's not that I didn't know who they were that day (though I often don't know my husbands name in the middle of the night) , it was that their face looked weird to me, like something was wrong with it. I kept thinking, why do i look so strange to myself and what is different about my daughter and my husbands face? It was so weird and scary and only lasted for that day. The wierdest was looking in the mirror and not recognizing my face, very scary.Julie: i have no idea what causes it..... i wish i knew.... and yes, i forgot to say, my 'vision' (or whatever this is going on) does that too.... people's and even my face will looked 'warped'..... kinda like a scary movie warped face.... or well, just warped to the point you dont identify with them or who they are..... i mean, i can sit and stare at hubby and not believe what im seeing, feeling..... not knowing who he is and when the warped face thing happens and hubbs is big and tall, well, he looks scary and im like 'what on earth???'..... sometimes i start to cry..... sometimes i just laydown and put a pillow over my face for a while and hope it 'goes away'........ i do know i have a tumor in my right eye, but it's not suppose to be causing any issues...... but i know that my eyes do very strange things..... with our without these episodes......yes, i really do wish i knew what it was....... hmmmmm....... yep, i dont like the warped looking faces..... that really messes with me, especially when it's my child im looking at when it's happening..... oh my, i dont like that at all. Quote
jenglynn Posted January 12, 2012 Report Posted January 12, 2012 Wow.. I am so sorry you girls have to deal with such severe spells such as this. I have never experienced the lack of recognition before. That much be so scary. I get a lot of waking up confused, or wondering why I am in a particular place. When I am typing, MANY times I will forget what I am saying or start typing things that I am hearing (people talking in the background, TV, etc) or everything looks like gibberish. I won't recognize letters or numbers. I have a hard time talking at times too... I have to speak slowly and I forget what I am talking about often, I can't recall words (I will KNOW what I want to say but my brain won't recall the word) or the opposite... I am talking and use the complete wrong word. If I read something, it is very common for me to completely forget everything I have just read. Your episodes DO sound like they are more amnesia related. I can't imagine. Mine seem more cognitive and I've attributed them to my multiple concussions (6 now) and not so much autonomic issues but who knows? I have extensive cognitive testing coming up so that may answer some of my questions. I sure hope you ladies are able to find something to help your symptoms. They sound terrifying! (((( HUGS)))))Jen Quote
icesktr189 Posted January 12, 2012 Report Posted January 12, 2012 Well if you think about it, lack of blood flow and oxygen can really do ANYTHING to the brain... it affects vision, sounds, ect... I think that is why I gave up looking into all my crazy symptoms because there are just SOO many!When I was able to get proper blood flow to my head, all this craziness disappeared.. and now I am back at square one LOL. I too get those and they can be super scary, but for me laying down really helps. Hope that they go away fast!! Quote
Hope Posted January 12, 2012 Report Posted January 12, 2012 Luckily I haven't forgotten a face, but i have often forgotten where I am suppose to be driving to and sometimes have to pull over to think about it. Or I have to back track because I finally remember and I have passed my destination. When I was driving more I took to writing a list of places I was going for reference when I forgot where I was suppose to be going. I have joked with my kids that I may not know who they are when I'm 50 and not to take it personally! Quote
Dizzysillyak Posted January 13, 2012 Report Posted January 13, 2012 I've done this for as long as I can remember. As a kid, I would space out and remember mymother talking to me to get me out of it. I learned to fake listen to her because I'd get introuble if I didn't respond. Lucky for me, she never caught on .. Lol ..I learned a few years ago that this is very common in autistic kids and these were calledpetite mals. In addition to this, I had trouble feeling like I was disconnected from myenvironment. Another autistic trait. The gfcf diet has eliminated this problem most of the time for me andmany autistic kids. Jenny Mc Carthy has a quote in her first book where her son, evan, talks about being shy but now he's not. He was 5 when he said this .. I still have petite mals regularly upon standing, but I recover much faster. Knowingwhat these are reduced my anxiety while these are happening. Eating every few hours helps too.It's the disconnected feeling that totally disappeared .. I'm more in touch with facial clues now too.Tc .. D Quote
julieph85 Posted January 13, 2012 Author Report Posted January 13, 2012 I don't think it's petite mals cause I've had several normal EEG. That makes sense the gluten free helped you, that is common with aspergers I have heard, I'm surprised it would make seizures better though, either way that's great! Quote
Dizzysillyak Posted January 13, 2012 Report Posted January 13, 2012 My only eeg back in the 90's was normal too. From what I was told an eeg only picks up seizuresif you're having one during the test. I never thought about getting one for my petite mals. For some reason, I thoughtit would only pick up the bigger seizures .. Just to be clear, well as clear as I can be .. Lol .. I was a total wreck when I was eating gluten all the time.I felt like the floor was moving in waves when I stood up. I fell over easily. My vision was distorted24/7. I had narcolepsy and would drift off to sleep. Etc etc .. But, I still have some symptoms when upright. I get petite mals if my blood glucose goes too low orI'm upright for too long. I just know why I get them now and can control this better. I still have to lay down to increase blood flow .. My recovery is unique to me tho. No one knows exactly who will benefit from a gfcf dietor what can be reversed via diet. Dr wahls' story is very inspirational as are all the stories about autistic kids.I hope this is clearer .. My head hurts .. Lol .. Tc .. D Quote
lissy Posted January 14, 2012 Report Posted January 14, 2012 I have depersonalization/GAD/Major depression, and I have experienced what your speaking of. Its totally different than a mental issue I can recall two times of it being severe enough to really freak me out. And the 1st time it happened I also had a migraine with aura (I felt dizzy,tingling,then the aura came, I was pregnant with my 1st child and ended up going to the ER by time I got to the Desk to check in to sign papers they handed me I forgot my name. The second time was when I was pregnant with my second and was driving down a familiar road and actually forgot what side of the road to drive on.These 2 episodes happened 10 & 8 years ago, but I still think about it...I have have many MRI's and other test throughout this whole process and no-ones ever said anything so I guess its nothing majorly wrong. Maybe a crazy migraine without the pain??? Maybe mini-strokes??? Quote
jangle Posted January 15, 2012 Report Posted January 15, 2012 If you're having periods of sudden amnesia I would get with a rheumatologist because you might be having some autoimmune thing going on in the brain. While largely unknown, brain involvement in other autoimmune conditions tend to be reversible with steroid treatment but it can be obviously scary in the mean time.The thing you're describing upon waking up/ falling asleep is actually somewhat common. People can hallucinate and/or suffer from amnestic like events during sleep/wake time due to transient alterations in brain waves.Before I had pots I used to get visual hallucinations before going to sleep every once in a while that completely freaked the **** out of me. Until I realized it wasn't anything serious. Quote
Lemons2lemonade Posted January 15, 2012 Report Posted January 15, 2012 Julie, that happens to me a lot especially the faces thing--I know what you mean but I can't pinpoint it. Also, I have gotten lost driving home more.than once and have to stop and remember where I am. I have also had an incident where I was unable to speak for a half an hour--it was like I had a stroke. Have you started any new medications recently that could be causing this? Quote
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