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
rgs09354 TaylorMason
Edited
hello. checking in. this is me.
i have had this for years. in case it helps anyone .
i have all the same symptoms as you, but do not have high anxiety anymore. i generally do not have much anxiety over symptoms but i rly need to figure out cause as they are interfering w work and grad school.
in addition to what yall have i also have i also have chronic burning mouth, which developed about 4 years ago amd gradually got worse and worse. this comes and goes with ear pain,, dizziness, worse and weirder t
tinnitus (i always have it) nd full body muscle aches . sometimes jt progresses down to my throat. it is excruciating. i am not in menopause, im only 25.
visual snow: started around 7 or 8 years old. had it forever, doesnt bother me but it gets worse during flare ups.
chronic migraines as a child. excessively sleepy.
tinnitus: since childhood
ear pain: began around 2018, gradually got worse
burning mouth: same
memory issues: same
occasional brown pee ??: started around 2019 i believe. It's off and on, v strange. Goes along with extreme muscle pain. isnt quite rhabdo pee color, but darker than normal and kinda foamy.
my eyes are CHRONICALLY changing ever since i was 8. prescription gets worse every year.
hypersomnia: diagnosed at 24
anemia: diagnosed at 24; fixed with infusions. it did not fix any of my symptoms except for heart palps and weakness.
reynauds: diagnosed at 25.
**recently went to hematologist. i do not have ANA markers, have had dozens of autoimmune panels run.
in 2015 i had a concussion after being hit by a car.
in 2018 i had an issue with sudden memory deterioration, have not been the same sense.
in 2020 was in two car accidents, developed neuropathy in my left leg
i have history of anxiety and depression but no longer willing to accept this as exlanation. the ear and mouth pain may be worsened by it but im done accepting it as the cause and gaslighting myself. this pain is not normal. i am not even that anxious about it honestly, ive accepted it and pretty damn used to it but im not really cool with spending entire (unpredictable) days in debilitating pain.
i also do not want to experience another 2018 episode, because my memory never recovred after that and i already act like i have early onset dementia. recently have had worse issues with it which is why im here.
Next step for me is ENT. these symptoms get worse or better all at once. after that will see neurologist if i still dont have answers, but ill probably need to marry into a country with socialized healthcare to make it happen.
i take an unholy cocktail of migraine meds, muscle relaxers left over from accidents. it doesnt help usually, but on days when im developing a migraine it does
.
opiods and narcotics do not touch my pain. i have taken them three times since developing this. they will take away other pain (wisdom tooth removal etc) but they do not help the mouth and ear pain. i have taken some strong drugs and have never found anything that can ease an episode of this (except migraine meds if i have concurrent migraine.)
would be interested to hear if this is your experience too.
also if anyone else has the mouth an throat burning, or gray vision/dizziness when you stand up.
rgs09354 TaylorMason
Edited
sorry, this website is horribly optimized for mobile, cant go through to fix typos and autocorrect isnt working on here 🙄
rgs09354 TaylorMason
Edited
Also, I have had depersonalization in the past. Worked thru that stuff, emdr, whole 9 yards.
this is different.
edit, UGH why tf cant i type on mobile on this website?!?
Every once in a while I get an episode of "pure" dissociation and it feels different. i can walk myself out of that in under 10 minutes, i got really good at it years ago. I cannot walk myself out of this brain thing that happens with the pain. No anxiety or panic techniques help it. I tracked this for months and did numerous behavioral interventions on myself (trained in therapy.) somewhere I literally have schedules written out. What happened was all my anxiety went away, like I feel mentally fine, but this physical stuff didn't...
i even went through stages of grief and accepted this as normal life 🤷♀️ until it got worse again, and im not bout to live like a dementia patient. Money for these damn tests is an issue so i appreciate these forums to get some idea of what its not.
rgs09354 TaylorMason
Edited
I just had to email a professor and ask for an incomplete for a masters level class due to these symptoms + having to have a battery of medical tests. so im kinda pressed about this right now. I swore to myself I wouldnt do that but right now my mental processing is just horrific + the pain isnt helping, its like i lost 20 IQ points back in 2018 and now I woke up and lost 20 more.
How is it that there's millions of people with these issues and still no answers?
also, does this run in yalls families? my mom has menieres and both mom and aunt deal with miscellaneous ear pain, debilitating sinus pressure, intermittent feeling like sh^t syndrome.
I've noticed people either understand this 100%, or they REALLY dont get it. can we crowdsource and see if everyone here has similar genes or something
jo96364 TaylorMason
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Alot of people seen to have forgotten about this post. i wandering it anyone has had a diagnoises or have gotten any better with time?
Samuel2021 jo96364
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I posted about this a few weeks back, please read my post. I have still not got a diagnoses, but I believe its along the lines of silent migraine.
pandaboyrome TaylorMason
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As I read through your post, I felt like someone was writing about me. The exact feelings and experiences you described overcame me after an anxiety attack last week Monday, and not until last night do I feel relief.
I honestly would call what I've been going through as panic attacks at this point, because mine have been ongoing for a few months now, just not as bad as this past week.
I'm seeing a therapist and we recently began to address the anxiety issues, blurred vision, feeling like I'm not 100% here and the night terrors. At my last session after explaining the fog I am in, with the pressure on my head, as well as the back to back panic attacks she suggested I take 1 aspirin before bed.
I dismissed the suggestion because I didn't feel it would make a difference. I too went to the ER had blood work done, EKG, X-ray etc., everything is fine. I was prescribed Ativan which didn't help, I've also tried Valarian root, which does help calm but it does not take care of the pressure that also causes my vision to be blurry or the nausea that comes with it.
Last night I decided to try the Aspirin and sure enough, I am sort of feeling like my old self again. I know it's a blood thinner but it helped me get relief. Maybe you should try and see if it works for you too.
Also if you haven't already look into talking to a therapist, it could very well be that you have some anxiety as well.
trisha45306 TaylorMason
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Everyone I may just have an answer for you....
Yes atypical migraines can cause all the symptoms mentioned. I also know stress causes muscles of the head and neck to stiffen which can also cause the same issue. Has anyone ever heard of TMD? This is what I have without the jaw pain and headaches - which started since a dental treatment. since then I've had a spaced out, brain fog feeling and it drove me nuts. I went to a neurologist to get checked out and thankfully scans were OK. Then I went to see a maxillofacial surgeon who did an MRI of my jaw joint and found both my discs were thickened and I had a disc displacement in one jaw - by the way, half the population tends to have a disc displacement in their jaw - but it only really starts to be an issue when the muscles overload the joints and guess what - many many patients with this problem complain of brain fog!
Stress places strain on your head and neck muscles and joints and if there is an alignment issue or overload I assume this can also cause many of the symptoms you experience, for some it may last beyond the stressful period if the misalignment doesn't resolve.
To summarise; stress CAN cause atypical migraines (though may occur without stress) or strain on jaw joint and muscles all which cause same symptoms. Mental trauma itself can cause dissociative experiences which are extremely distressing. what is the solution - de stress and give yourself time to heal.
jo96364 trisha45306
Posted
mine definatly got worse after i got a filling last year.. wander if its possible its got to do with dental work,
reislerart jo96364
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Interesting... Now that I think about it, I have a lot of jaw issues (teeth grinding, severe jaw pain at times, headaches, clicking/weird noises on opening jaw) and my symptoms are really bad a short while after having major fillings (with a strong dose of Anesthesia too because I didn't get numb enough last time).
This would be the last thing I would have expected to cause my symptoms... Although I also have several more issues than just brain fog (dizziness, ear ringing, fatigue, full body weakness/soreness, muscle twitches, anxiety, and some random sensory issues)
jo96364 reislerart
Posted
ive had full bloods done recently. all clear, had mri all clear, i orginally blamed it on my B12 definancy, but doctor has told me last bloods have showed my B12 is really good (im on injections for it) its all the wierd feelings that i cant cope with. weak, tireness from the moment i wake in mornings/zombie like feeling, derealizion, feeling something bad is going to happen me, headaches, spots in my vision, &
i could go on & on...
Ollo_vae TaylorMason
Posted
hey, ive been going through the same thing for the past year. It is absolutely terrifying. i have a therapist who says that it is depersonalization disorder, but i feel like its my brain despite test results. i hope you find the answer honey.
annisten86734 TaylorMason
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I know everyone is commenting how much they relate but I hope you can relate to my situation as well.
I have all of the same symptoms but my biggest worry is my vision. Its a spacey vision almost if i was high but all the time . I thought it was anxiety related as well so i got on an antidepressant. Other symptoms did go away but my eyes have me really concerned. Ive been to multiple doctors and they say something along the lines of i'm crazy.... help
Brokey22 annisten86734
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hey,did the antidepressants help you with brain fog and detached feeling or those symptoms went away by their own?
annisten86734 Brokey22
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It did not help with the brain fog nor detached feelings. It did however stable my moods and help with anxiety. Do you know the vision i am speaking about ?
Brokey22 annisten86734
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Yes, I have blurry vision as well . Sometimes I can not look at the TV screen and my phone, and my brain fog and detached feeling not only didn't go away, but they got worse.
so how did your other symptoms go away?
annisten86734 Brokey22
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Well it definitely helped with uplifting my mood and enjoyment towards things. It also helped with overthinking. The crazy thing is ive been to the eye doctor twice and he didnt see anything wrong with my vision but I know that its not normal. Its almost like when you are high off of pot and your vision is wonky. Except thats what I see all the time. Ive also described it as seeing pins and needles type of thing. Or when you are hungover and you feel detached. I dont know what else to do.
Brokey22 annisten86734
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My vision is very blurry and I went to the ophthalmologist as well and he said that there isn't any problem with my eyes. I think there problem is in processing parts of brain but I do not see anything like needles. What bothers me the most is the inability to concentrate and poor memory like i literally don't remember 2 days ago . Do you have memory problem as well? I could not find anything helpful. Some doctors prescribe me antidepressants, but I do not think it will help the symptoms. I feel like i am drunk all the time. If you find a helpful answer, please let me know.
jo96364 annisten86734
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your describing what i feel exactly. its so scary, its so many feelings that its so hard to describe! and do you wake up feeling like this in mornings? because i do, and it either gets worse and eases a bit throughout the day. feel like when you keep yourself busy its not as bad (but this is hard to do when your feeling like this,) think you have to try put it to the back of your mind, feel the more you think or dewel on it, the worse it gets. dose anyone else feel that the weather effects it? i feel on a good sunny day i dont feel AS bad..
Mike-NZL jo96364
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I think so, that and seasons. summer is bloody awful.
annisten86734 Brokey22
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Yes I have been having memory problems more now. It is scary because i find myself dissosociating a lot. I am getting a referral to a neurologist this week and I am hoping i can get some answers. I have read that it could be a dissasociative disorder or depersonalization but that doesnt sound right to me.