Debilitating symptoms. Brain fog...extreme memory loss...spacey 24/7!
Posted , 640 users are following.
The last year of my life has been a brutal one. At the age of 22, I am in the lowest of lows and I desperately need some help!
Here’s my tale:
About a year ago, a couple months after an extremely strenuous relationship, I began noticing that I was tired all the time…and all around, I wasn’t really satisfied. Don’t get me wrong, I still enjoyed my friends, and activities…but life just wasn’t as bright and vibrant anymore after a month of noticing this ever-present fatigue, it got a bit stronger. I would wake up each morning completely zombie-mode…and that feeling would remain throughout the entirety of my day, until my head hit my pillow that evening.
Initially, I suspected some form of sleeping disorder. I set up a sleep study, got my thyroid checked, ferritin levels, all the basics. Sleep study revealed I sleep just fine and all my other blood tests came back negative.
The fatigue and the weight of the world slowly got worse over the next handful of months, UNTIL I woke up one morning and everything escalated greatly. I felt completely stoned. I couldn’t think right. I couldn’t concentrate. I felt inebriated. I felt totally disconnected and spacey. I felt as though I had no control over myself. I lost drive and motivation. I lost a lot of confidence. I always had an incredibly sharp memory. It was actually something well known about me to those in my family and friend circles. Yet, on this morning, almost all new information could not be retained. Things that happened earlier in the day, by evening, I felt they happened a day or two before. I could no longer recount the activities I took part in. This is possibly the worst of all the symptoms. The extreme short term memory. I have no context for time and I sort of feel like I’m just floating through life suffering.
For months I visited doctors getting tested by specialists. I visited a neurologist, infectious disease, I had an MRI, & I had about 20 different blood tests. NOTHING. My doctor literally said “I have no idea what this could be. I am beside myself” TOTES reassuring! I tried altering my diet entirely to organic and all natural. I continued my workouts and ran 15 miles a week. I tried sleeping even earlier. I tried all I could think of .
I have scoured the message boards and found a few people suffering from the same, but without answers.
I’m not sure if depression is the culprit, but depression sure has found its nasty venom-coated fangs into my veins. Tired, depressed, failed memory, no drive, scared…it’s no way to live. I want my life back.
PLEASE OFFER INSIGHT! I will be so grateful J
Sincerely,
Taylorsaurus Rex
54 likes, 1428 replies
annie06499 TaylorMason
Posted
TaylorMason, I started Google search with so many different keywords trying to find anything at all about what seemed to be called 'brain fog'. That took me to cognitive disorders and anxiety as a possible cause. I suffer from debilitating anxiety, severe OCD, ADHD, as well as audio processing disorder, to start with. I've been trying to figure out why I cannot wake up, after 7 cups of coffee -which only made my hands shake- and my adhd dextroamphetamine, and a lot of B vitamins. Nothing. I just end up falling asleep in my chair and dumping coffee on myself. I tried to see if one of my many bedtime meds was the reason. Nothing. And then there is that kind of spacey feeling like I'm not in the same reality as everyone else and I cannot communicate or interact with anyone. I have absolutely zero memory; I have stopped even trying. I don't even remember things like where or if my girls are working or in school, or what courses. I don't work and am on disability, and since I only have any human interaction (literally, absolutely alone and only my dog to ever speak to), other than couple days a month in bank lines etc, I also have no sense of time. Suddenly a week has passed and I have no idea what day it is. When I tried to journal what I did or felt or whatever, if I didn't write it down immediately figuring I'd do it later, I couldn't remember if or when or what I had done. I found some people describing some of what I felt. That was helpful by at least giving me the words to articulate what I was experiencing.
Then I got to your post. It was 3 years ago, so I don't even know if you'll ever even see this. But maybe it will let anyone else going thru this too know they are not alone. When I read your post, every single issue was exactly what I experience and perfectly puts it all in words. And not different people different issues. But someone who knows exactly what I am dealing with!
Anyway, now I have something to perfectly describe what I have been unable to get across. I never even thought of them as all being connected in any way, one 'issue' and not separate problems. I hope I can find a remedy, maybe now that I have the perfect description I can start from there. So Taylor Mason, for your post! Validation is a great thing!
kimberlie63888 TaylorMason
Posted
You spoke to my heart....I could not have said it Any better.wow.I have no words..I'm scared of everything!!!!! Just a person walking in room startles me so bad I scream!!
kimberlie63888
Posted
I am not sure anymore if I don't sleep or that's all I do.I dont know what day it is sometimes. I have health issues.but sometimes when. I start to fall asleep I get scared that I might not wake up and having the health issues up on anxiety I'm scared to fall asleep sometimes and it feels like when I fall asleep that I'm not breathing right I smoke cigarettes and a drink with a little lately I've been drinking smoking more than ever so then that worries me I'm not sure what to do anymore I know I'm having a hard time but I'm having a hard time crawling out of this rabbit hole this is too much I need some advice as well
michael30415 kimberlie63888
Posted
Yes it can be scary. Seek help however you can and don't give up but more importantly ask God for help and trust Him to help you.
mark05672 TaylorMason
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annie06499 mark05672
Posted
UPDATE
I first posted here when i found this thread 9 months ago. I was looking for answers too, like it seems that so many other people are looking . I still don't have any solution but I have come across something that might be an answer. Something I can take it to my doctor and he might know about it. At least I'll have a place to start and won't get the usual responses about med side effects etc. In the last 9 months, my memory loss has gotten so severe that I don't even want to try and interact with other people beyond cashiers and bank tellers. I can't even remember what my daughter's jobs are, what classes they have etc. I stopped asking because they get annoyed and I won't remember anyway.
I started seeing a new psychiatrist in January and he was concerned about the memory loss in particular. I have a lot of other issues I struggle with and I take a lot of meds. Some things could be attributable to the other conditions and/or my meds. Or all. Or something completely unrelated. But the bottom line is I basically can't function. I've come up with my own words for the two types of my days. There are the Real Days. These are the days without Brain Fog, when all I have to deal with are my my usual difficulties. Then there are my Zero Days, or Nothing Days. For me, these days don't count. For the rest of the world, they do. Time passes whether I participate or not. So if my rent is due on a Zero Day and I don't pay it, it's still late. I think one of the hardest parts is the fact that I'll never know which kind of day I'm going to get. Just to let you know here are some of the other issues we've identified so far. I say so far because just like Brain Fog, I start to search for answers and I come across these 'ah ha, yes that's it exactly!' descriptions, i can't even begin to say how validating it feels when random pieces all fall into place. and looking back, so many things make sence. They are real. And it's not like looking thru medical diagnosis and think I have brain tumors or cancer either. Quite the opposite. It's such a relief in a way. I can tell my doctors and not get written off as delusional and the like.
A perfect example: Face blindness.
It's when you cannot recognize faces. I didn't know why, but I learned to tell people, " I won't recognize you if I see you again. Don't take it personally, my brain just isn't wired that way". And what often goes along with it is that I Don not have any mental 'maps' so I rely on landmarks. In a restaurant or campground etcwhen I go off to the restrooms, if I don't turn around and see which way I will go back, I'll get lost.
One more pieces to the puzzle. maybe someday there will be enough pieces that I can have a life, not this relentless battle just trying to make it thru the day.
Anyway, in addition so far, adult ADD, severe OCD and GAD, bipolar, Audio Processing Disorder (APD) - throw in some fibromyalgia too.
Back to Brain Fog. I had a complete workup by a neurologist. CT, brain scan and MRI, EEG and EKG, nerve conductivity tests, complete bloodwork ruling out Lyme disease, lupus, other immune system problems, vitamin deficiencies, diabetes, liver diseases . Other than slightly increases in brain activity due to anxiety/bipolar, everything came back normal.
I sometimes have nights where I will get up to use bathroom and seem to be half dreaming. Not sleepwaliking because I remember it the next day. I'll think I'm in another room, or somewhere else, bang into things, and get lost. One night was really bad. I kept falling down and knocking things over, dumped ice cream, just pretty bad.
I did searched on different words and finally got a hit. Its called Sleep Drunkenness. I also found the name of an actual condition that seems to fit the description of my Brain Fog.
SLEEP INERTIA
Normally, when you first wake up,
You have up to a few minutes of Brain Fog. Sleep Inertia is a condition is where it goes on for much longer after you wake. They say this can it can last for from 15 minutes or up to several hours. My symptoms happen to go on for the entire day. Unfortunately, most of the research so far has been concentrated on finding ways to prevent the problem , not on ways to manage after you wake up. They did studies on of things like seeing if caffeine helped, etc. There really didn't come up with any thing yet to help.
But I now have a place to start when I see my doctor and maybe he'll have some things I can try.
ana85762 mark05672
Posted
LeninLover68 TaylorMason
Edited
Just wanted to leave my story for anyone who is going through similar symptoms.
Its okay to feel scared sad & depressed. This is by far the most terrifying thing I've ever experienced and I'm sure you're feeling a similar way.
Some context, I have had these symptoms for about a year now. About three months ago, through various doctors appointments, it was discovered I had a mass in my sphenoid sinus. I found a couple of threads where the OP mentioned that he had a minor polyps in one of his sinuses.
Long story short my ENT specialist decided to remove it, citing that he has seen some pattern that masses in sinus can cause the symptoms we're describing. He was probably about 60% sure there was some causation.
A month after the surgery I still feel the symptoms but I think at a lower intensity. He had given me a three months to a year of recovery time so I guess that's expected.
Regardless I'm not satisfied. I'm having neuropsych testing done to hopefully get a better understanding of my symptoms. It's not scheduled yet but I'll be updating this thread with any information about my progress.
michael30415 LeninLover68
Posted
nemecky LeninLover68
Posted
annie06499 LeninLover68
Edited
I had sinus polyps removal surgery in 1992. I was getting sinus infections about every 6 weeks. Haven't had a cold since! Anyway, I still started experiencing the brain fog/dream state. But surgery was 25 years ago...
titi3647 TaylorMason
Posted
This is crazy to have learned so many people are suffering from the same thing's I am. I also was in a stressful relationship. He literally had me feeling like I was going crazy and imagining thing's. And he would never do the thing's I was accusing him of doing. Even though everything pointed towards what I had been saying all along. He finally did the unthinkable and had our family literally torn apart. But during this time I noticed memory loss worse than I had ever had. I had depression, & anxiety. Never been diagnosed with it but I know because of the circumstances of the situation. Went on for intierly to long. I started losing focus, in a middle of a sentence I would completely forget what I was saying my mind just went completely blank. I have forgotten almost everything I've ever learned. I'm having to teach myself all over again. It's quite embarrassing. I can't help my own kid's with school work and home work. I feel like a failure. I'm always in a fog. At least when I learn something and do something every day consistently I'm fine. If I go on vacation for two weeks and come back I'm lost. Even when I look at something and try to write it or type it I instantly forget what I was doing or trying to write. And I had seen on here some one had said a leaky stomach I wonder if that could be it for me but I also have bad teeth in the back of my mouth and I wonder if that also plays a role. Plus, I also have a thyroid condition. I was off my meds for over ten year's during that time I have lost 75% of my hair thickness. I know that also plays a major factor at least I would like to think so. Because I have always had slight memory loss since I was in 6th grade. But it's truly worse than I could ever imagine. I also think it could be Alhzimers or Dementia. But I can't afford health insurance so I won't know or be able to find out. I wish everyone the best of luck. If you find anything please continue to share. Glad everyone could be so honest and forthcoming about their problems. It's a little comforting knowing I'm not the only one that is experiencing these issues. God bless all of us!!
lacie31869 TaylorMason
Edited
Desperately wondering how you are three years on!? I've been suffering for over a year and s half with all of these symptoms, my life does not feel real and don't get me started on my memory, I used to have the best memory! Now I can't remember if what I did yesterday was a dream it was reality.
I just woke up one day with this feeling and it never left, I cannot handle it anymore doctors are no help I e had every test done and nothing do they pinned it down to anxiety or depression but I don't have anything to be depressed about! Nothing has happened I'm not that type of person i was always happy loved going out with friends I can't even handle doing that anymore, and hot summer days? Forget it I can't be outside for more then ten minutes, night time is my favourite part of the day as it's not as bad.
I'm pregnant and fearing I wont remember meeting my baby because I can't remember s**t.
My concentration is crap!! I always feel tired n have no energy and my eye sight has gone to s**t, it's been so long I forget what being normal feels like I cry a lot over it, not as much as I used too because to me this is life now 😞 Needing help !!!!!!! Over not feeling real
ra7777 lacie31869
Posted
BreezyCurls09 lacie31869
Edited
I too went to every specialist and was told it was depression or anxiety and finally gave up and believed that was it. And to a point it is true, only something is causing the anxiety because I have literally no triggers. After a few months of therapy, even my therapist said she can’t figure out what would cause me to become depressed or anxious. If for nothing else, therapy has helped me to learn to cope with this magical illness. But definitely look into dental. I’ve been evaluated and am just awaiting getting my teeth cleaned and extracted.
Rockers BreezyCurls09
Posted
Good point and something I had considered as well already but actually never looked into any further. My latest episode, started a couple of month after I visited my dentist to have my amalgam fillings removed. Of course this was just a standard dentist who would not know about amalgam save removal options. I still have some amalgam fillings which I might have removed by an amalgam save dentist. Even if it is more expensive.
ana85762 ra7777
Posted