Debilitating symptoms. Brain fog...extreme memory loss...spacey 24/7!

Has anyone heard of Chiari Malformation? I'm trying to get an MRI so someone can actually see the problem and help. My symptoms are so much worse, hopefully this is finally the answer. It would explain 99% of my symptoms. The possibility of surgery that might actually help is really exciting.

its definitely brain damage related, ive got brain fog, dissacosiation, memory being a mix of cant remember 2 seconds ago to being able to recite s**t ive read akmost a week ago still word for word (i do lil brain excersizes when no ones lookin to sorta note the downfall) being a complete retard most the time, i also get extreme paranoia and delusions to where i start thinking im in the truman show or was cloned for perfect genetics and now everyones gonna kill me cause i destroyed my brain and have become useless. im pretty sure its either extreme depression/anxiety and a mix of rewiring my brain due to stimilant abuse, or just schitzophrenia literally any advice on what else it could be would be appreciated

its definitely brain damage related, ive got brain fog, dissacosiation, memory being a mix of cant remember 2 seconds ago to being able to recite s**t ive read akmost a week ago still word for word (i do lil brain excersizes when no ones lookin to sorta note the downfall) being a complete retard most the time, i also get extreme paranoia and delusions to where i start thinking im in the truman show or was cloned for perfect genetics and now everyones gonna kill me cause i destroyed my brain and have become useless. im pretty sure its either extreme depression/anxiety and a mix of rewiring my brain due to stimilant abuse, or just schitzophrenia literally any advice on what else it could be would be appreciated

I’m 28, and it’s like I have severe dementia, but I am aware of my horrible memory (as dementia patients aren’t). I constantly forget things seconds, minutes, and hours later. Sometimes I will try to focus so intently on what I am doing as not to forget, yet if I’m lucky to remember it, it is purely just because I memorized what I did rather than have any visual memory/recollection of doing it. This started over two years ago. When it started, it only happened with a couple of moments of forgetfulness a day. Some days I didn’t even notice any issues. Over time it has become constant as if I have almost completely lost my short-term memory. I’ve also seen that over the years, I have forgotten so much of my past, from vacations, graduations, how I met my friends and almost all past conversations. I have never suffered any physiological or psychological trauma that I am aware of. I do have idiopathic hypersomnia and took sodium oxybate (prescription GHB) at one point. At first, I was convinced that that medication was responsible for my worsening memory loss; however, I’ve been off of it for seven months, and my memory has only gotten worse. Even with my sleep disorder, I am awake and alert taking Pitolisant, so I cannot blame being sleepy on my memory lapses. I had breast augmentation a couple of years ago and thought maybe that could be a cause, but even after reading stories about people who have suffered from breast implant illness, I don’t see anyone with such significant memory complaints. To note, I started to have a pressure/tingling feeling between my eyebrows and above my nose. It started intermittently and turned to constantly. I thought it was sinus pressure, but I had a negative sinus CT. I tried several migraine medications, and none worked. Gabapentin did eliminate most of this feeling, but when my memory didn’t improve with the pressure relief, I figured there was no point in taking it anymore. I’ve been on antidepressants for the last decade, but I feel like my depression was in remission when this started. I believe my memory problems caused a relapse in depression and anxiety rather than mental health symptoms causing the cognitive effects. I don’t feel dissociated currently, but I did feel that way several years ago. I feel like I’m high/drunk, but only the memory aspects of that. I don’t do drugs. I drink a couple of glasses of wine a week. I currently take 200 mg of Zoloft and propranolol. All of my blood work from neurology has come back normal. I’ve had 1 brain CT, 1 neck MRI, and 3 brain MRIs over the years– normal. Two EEGS– normal. Sleep study- lack of atonia during REM sleep (but common with my sleep disorder). Neuropsychological testing– within normal limits. I will try TMS, but I’m losing hope that I will ever get better. I used to be a high-functioning adult, and my memory impairment has made it impossible for me to go to school or hold a job. I don’t even feel safe at home alone because if I don’t write everything down, I won’t remember like taking my medication, going to the bathroom, or letting my dog outside. I’ve even completely forgotten whole episodes of television and having sex a couple of hours later. How could this possibly be psychological?! It’s tormenting. Sorry for the length of this post.

I’m sharing the questions that I asked my neurologist with answers in case this information can help anyone else. Honestly, had I not sent my questions as a portal message I would’ve never remembered what I asked or what the answers were.

1. I read in your note that pseudodementia may be causing my subjective cognitive impairment. After researching the condition, it seems like depression precedes memory problems with this and eventually reaches a plateau. I noticed the memory problems first, with the depression following. My memory has also gotten progressively worse over the last couple of years. Also, during a month that I felt the happiest in a long time (April 2022), my memory problems were the same in intensity, and it seems that pseudodementia is associated with persistent poor mood. Could there be another cause besides this and my sleep disorder contributing to my memory complaints?

2. It also seems that subjective cognitive impairment affects more short-term/recent memories. Do you know what would explain my significant loss of memories over the past decade? My memories from elementary and middle school are so clear, yet memories from the last decade, like high school, college, and beyond are mostly missing. I noticed this over the previous several years. Even pictures won’t trigger memories. For example, high school graduation, college graduation, vacations in the last few years, concerts, and gatherings with friends. Is there a chance that any of these memories will come back?

3. Most debilitating to me is forgetting things seconds, minutes, and hours later. I know that my neuropsychological test results were considered normal. Still, it confuses me that it is even possible to be normal because I am not making up these issues that I am experiencing. I forget almost all aspects of my day– entire conversations, taking medication, ADLs, etc. Even sounds like if the phone just rang or if my dog just barked. It truly is a terrifying experience. Is it possible that this has a psychological origin if it is so severe?

4. It was suggested to do psychotherapy, and I am currently on antidepressants; however, I am afraid that this won’t be enough to remedy what is going on. I’ve taken antidepressants for most of my life, even when my mood was completely stable. Also, when I had a very structured schedule with school, exercise, healthy eating, and socializing, my memory still suffered significantly. Do you think TMS or ECT could help?

5. Whenever I spend time with my friends, they bring up stories from the past, sometimes from weeks before, and I have zero memory of what they are talking about. I honestly don’t know almost anything that I’ve told some of my closest friends over the years, but they always remember what I have told them. Even a couple of hours later, I won’t remember what we talked about. Is there anything that can explain this? I know when I did the neuro-psych testing, sometimes they asked me something twenty minutes later, so it’s possible that I still remembered; however, if I was asked an hour later, I would likely not have much memory of the task/test and would perform significantly poorer.

6. Do you think there is a possibility that my breast augmentation could be causing some of these memory effects? They seemed to get worse after that time, but it also was a time that I started Xyrem, so there were confounding factors that could be attributed. Would it be wise to request an MRI of my breasts to ensure there is no rupture of the silicone implants that could be leading to my symptoms?

7. Lastly, would any other diagnostic testing be of any benefit, such as a PET scan or CSF studies? Or any medications/supplements?

Answer: The pattern of cognitive complaints that you describe are all still commonly seen in the setting of depression, and it is likely that your prior use of Xywav/Xyrem interacted with this to exacerbate the cognitive effects. In particular, dementia can be associated with poor concentration and attention, and this can appear as poor memory even when memory tests are strictly normal. The idea being your memory filing system, storage system, and retrieval system can all be working, but if the information is never put into a file in the first place because of attention/concentration issues, then the file can't be retrieved later on. I am still optimistic that mood management especially Cognitive Behavioral Therapy can help address this problem. As for possible transmagnetic stimulation etc., that decision would be best left up to your psychiatry team.

From the neuropsychologist that I saw:

• Subjective cognitive dysfunction is a person's experience of cognitive dysfunction. A functional cognitive disorder is when someone has cognitive concerns and difficulties that cannot be traced back to brain structure abnormalities/dysfunction.
• I can understand the confusion (and frustration!) of experiencing memory difficulties in everyday life despite performing within expectation on neuropsychological testing. The testing environment does reduce environmental distractions that can otherwise interfere with our attention/memory, which isn't always the case in the real world. It is possible that in your everyday life, the preoccupation of needing to remember can get in the way of actually remembering, as the focus then becomes needing to remember versus the experience.
• Psychotherapy would be an effective tool for managing distress about your memory, as the distress can interfere with memory experiences in everyday life. I do think more intensive psychotherapy such as that provided in a PHP would be of great benefit.
• Our neuropsychological tests unfortunately don't measure memory performance over the span of several hours or days but give us a good indication of one's overall memory abilities.
• I would expect that intensive psychotherapy that addresses the emotional distress about your memory would be of benefit and likely to result in improvement. In addition, staying cognitively stimulated, having structure and consistency in your schedule, and using compensatory strategies discussed in our feedback are likely to result in improvement in your everyday life.

Questions and answers from my psychiatrist as I feel the same as you:

Question: I wish that I could say that I am happy that my neuropsychological results came back normal, however feeling “normal” is not what I experience on the day-to-day; the results are actually making me even more distressed because I truly do forget things and it varies from seconds, minutes, or hours later. My family sees it, my friends notice it, and I just want my memory to get better but am losing hope that it will ever happen. My memory also has progressively gotten worse over two years. It baffles me that my subjective complaints are so out of line with the objective test results, especially as I feel that my memory complaints preceded any depression. I do have a couple of questions about the results. The main question that I have is do these results guarantee that my memory problem is purely psychological? If not, would it be worthwhile to get a brain PET just to make sure nothing has been missed? Also if this is psychological, would ECT be something to consider again? I did have substantial memory loss during ECT in 2014 and for several months after, however it seemed to eventually get better as I was later able to graduate from college and work fulltime. I was hoping to try TMS first but as the days go by and my memory is horrible to the point that I feel completely dysfunctional.

A: I have reviewed your neuropsychiatric testing report. The results are not consistent with a neurocognitive disorder (dementia or underlying neurodegenerative process), however, this does not mean that you have to feel "normal." I do believe that your percieved memory deficits are something that you are experiencing and are related to your depression and anxiety. I believe further treatement for these conditions will help how you feel about your memory. A PET scan is not indicated at this time. TMS or ECT may be options in the future depending on your response to medications. I do believe that these memory deficits you are experiencing will respond to treatment for your psychiatric conditions.I hope that this message finds you well and look forward to discussing further at your next appointment.

i get this ,been diagnosed with depersonalisation and derealization disorders

Did you ever find out what was causing the issue ? it literally sounds like a long covid type of illness

It's with both scarce relief and dread that I stumble upon this thread. The first because finding more people in the same situation makes it feel like I'm not just some persistent hypochondriac, and the second because it confirms my fears of this being a terribly unlucky and strange medical situation. I've been dealing with this same symptoms for almost 7 years now (just like you, it seems!), and it's been a really tough time.

This started when I was 12 years old (yes, 12) and I was in a kinda stressful situation. My days were totally normal in terms of health, until one day in class, where I could feel this sort of pressure building up in my forehead, between my eyes and behind them. I didn't panic at the moment because I remember feeling that... bloatness, pressure-like sensation when I was even younger, and I think it was when I was sick from the flu! From then on, it hasn't gone away; not for even one. miserable. day. I'm 19 ( 20 in a month), and I'm numb enough to say without freaking out that it has gotten worse, to the point where my quality of life is awful, specially because I have to go to college and think and I'm unable to perform as I used to.

For the past 2 years I haven't been able to concentrate at all. Before that, I still had trouble, but didn't feel like my intelligence was in shambles. Now I just can't remember the things I read and I have a lot of trouble with thinking clearly, let alone writing down my thoughts or reaching conclusions. I'm slow, fatigued, and I feel sleepy all the time, no matter how little or much sleep I get. Lately I've been feeling these hot flashes all over my body, but specially in my legs. Last year I was diagnosed bipolar disorder, but I can't say my mental struggles are all to blame; if anything, I wouldn't be surprised these stem from this physical head problem, since they started a year or so after this began. I've had an MRI done, I've been to an otorhinolaryngologist to see if it was sinus pressure, I've had multiple blood exams, and I had an electrocardiogram last year- but there was nothing evident.

The only things I could think about were a tension headache (ruled out since it hasn't gone away at all and I've taken plenty of Tylenol and muscle relaxants to no avail), elevated blood pressure (there is this whooshing sound in my ears along with tinnitus, and shortness of breath when I stand up, where I can feel my heart pounding very hard in my neck, but the intensity of these symptoms varies a lot), high intracranial pressure (though I don't have the neurological symptoms, I guess), and even hormonal changes.

The only tell I've found through exams are: I have very mild anemia, some deficit of phosphorus (I think) and a few other minerals, I apparently have a dilated left atrium (which could point out to high blood pressure, but that hasn't ever been mentioned by the doctors, except for one occasion), and a little bony bridge in the back of my head called Ponticulus Posticus, that sometimes could cause the compression of the vertebral artery and suboccipital nerve, and thus causing poor blood circulation to the brain and headaches (which would explain the cognitive deterioration), but I feel so defeated and tired from last appointment that I can't think of how to introduce any of these theories (to which I have done quite a lot of research over the years) to any physician without them giving me the stink eye because: 1) "I don't know what I'm talking about" 2) "I'm too young to be this ill". (To me, excuses to cover their incompetence and sometimes downright gaslighting).

This is long as hell, but I just wanted to share my ideas and tell you you're not alone in your suffering. If anyone has any insight as of what this could be, or what has been useful to prevent getting worse, I would really appreciate it! I'm a desperate uni student.

For the last year I've been in constant conflict with control over my mind- just fight goes on for over 2 years. I mean the campaign of hate is real so much drama has happened in the last 3 years I had no choice but to turn towards myself and do a lot of self care. As my mentality disrupted me Maybe feeling despair made me feel depression annoyed the hell out of me everyday I checked on my physical conditions and had some procedures done big positive. I get what you're going through I've chosen the path of spirituality and in-turn of the pursuit of happiness, so I may find myself once again being peaceful in my own mind- sharing my mind space with myself he's become a Shakespearean tragedy. If you're here man and you want to talk message me.

i have the same proble to an extent. i had a severe concussion when i was a teen and idk if thats related but i got a terrible case of mono 5 years ago with TERRIBLE brainfog for months and now 5 years later right before i graduated college the brainfog came back. i dont do anything such as hanging out with friends or pursuing my hobbies i feel like a shell of my former self and the last three months have been a daze and on top of that i just started my first full time job as a graduate. im even struggling to type this. ive done mri's eeg's, gone to chiropractor, taken every supplement i could find, and nothing is helping. the only thing we know is that i have ebv. i do have ocd and anxiety but i was doing fine mentally when this started. please help

did it get better for you? my vision is also affected. It's grainy and migraine-like.

this happened to me and went on for over ten years and continues. I went for all sorts of tests too, multiple mris and cognitive tests, blood tests, psychological tests , you name it finally recently a neurologist saw small changes on my mri months apart apparently ive been having tia's which are mini strokes due to microvascular changes in my brain granted im much older than you im 60 and this has been going on for 10 years but it didnt show up on anything my short term memory was shot but then it would come back til the next tia my speech was off too and my balance also i lost my joy in the everyday things I still feel like this but i guess i know why