A tumor stole every memory I had – what happened when they came back | Hacker News Reader

A tumor stole every memory I had – what happened when they came back

qz.com

344 pointssmalera42 comments

I actually had a similar incident with memory loss some years ago. It wasn't because of a tumor but from severe central sleep apnea, that as near as I've ever been able to figure out had been going on for about a decade and was taking a significant toll on my body and brain. The way he describes the memories coming back to him is much more eloquently put than I've ever been able to manage. I hadn't hit a point where I had lost the ability to reason, but it sounds like the memory loss was comparable. There was a period of about 2-3 years where I just hadn't been able to recall much that happened recently or long ago. I wasn't quite as fortunate (I think) as him with the recovery of memory, there are still people and relationships that I don't fully recall and likely never will at this point, but the things that did come back came back in that same kind of jumbled B before A kind of way. It was incredibly frightening for the first few months like that because memories would just pop into place and I'd realize that I didn't recall them before and feel like I just wasn't me during that time, I was some incomplete version of myself and had no idea that I was missing parts of myself. It's an incredible experience to get those things back but it's awfully frightening looking back onto the times when they weren't there and not being able to help the thought that a large part of you just wasn't there for years at a time, and if you're really the person that was there before, during, and after the whole thing. That did lead to a good deal of depression for myself during some of that, after realizing things that I did that just didn't look or sound like me because of everything I was missing. It sounds like he had a lot of help from his friends and family which was tremendous in getting him to this point. I also likely wouldn't have fared nearly as well without mine.

It's interesting that both you and the author mention recalling things and simultaneously knowing that you hadn't recalled them before. When you remember something, it rarely brings to mind the specific situation in which you last remembered that thing. But apparently, somehow, you remember that you have remembered it at some point, enough to be startled when you haven't!

In my case it was a lot of the memories from things in college, things I knew I didn't remember from classes and things. A few things from the jobs I worked around that time too. I could usually tell it was something I couldn't remember before simply because it didn't fit anywhere for a while, just the middle or end of something that happened and didn't connect anywhere. Sometimes it made me feel like I was going a bit crazy and wasn't sure of what they were right away. Smells and sounds seemed to be the biggest things that surfaced things, sights less so. There were a few times where I'd remember a song I heard during that time and it took me a year or so to figure out what the hell the song was, those in particular drove me the most nuts because I've very little talent for music so until I remember more than a word or two from it I couldn't figure it out. It was actually something that was hard to talk about at first simply because it's so bizarre and unfamiliar that you can't really seem to express it in a way that feels right.

Woah this shows how sleep plays a role in organizing memory, if your condition was restricted to sleeping. Interestingly the effect was similar to the other guy (memories fine but indexes missing). Did you contact any researcher/anyone contact you?

No, I've never had researchers contact me, but it's a fairly well known (as far as I know) result of chronic, severe sleep apnea:

http://articles.mercola.com/sites/articles/archive/2015/05/0... http://www.webmd.com/sleep-disorders/sleep-deprivation-effec...

Those are just some articles from this past year but the specialist that I saw for sleep problems when this was all diagnosed wasn't surprised at some of the memory issues I had been having given how severe it was; O2 saturation was dropping down to around 80% for a large portion of the night, and never above 90%. I was also having 0-30 seconds of REM sleep a night from what I was told in the sleep study. Both the terrible O2 and lack of REM sleep account for what was likely happening to my memory. Sleep is definitely a huge deal when it comes to memory.

There's probably different levels of recall. Like, raw acknowledgement of timestamps, i.e. this must have happened here while I was there. And then actual high level understanding and processing, like I was at this place and it was unusual for my daily routine, because I needed some papers signed, or whatever.

Probably in a normal functioning person they go lock step so you don't notice how they are different. But if your processes are out of sync, it could explain how they arrived at their feelings.

That happens more than you might think. Have you ever recalled something from your childhood and thought "oh, man, I haven't thought about that in years"?

Memory produces a lot of weird references and metadata. There are some significant experiences in my past where I'm pretty sure I don't remember the thing itself at all, I just remember remembering it. The vivid, multisensory experience of the event fades, and is replaced by the story I told myself when I thought about it later.

How did you cure your "severe central sleep apnea" ?

Not cured, but treated. I'm currently using a BI-PAP machine that's made a world of difference (as long as I keep my beard trimmed). It's just like a CPAP but will use different levels of pressure for inhaling and exhaling to help trigger the body's autonomic responses to breath. In my case the settings are as high as this particular machine will go, i completely forget what the units are now, 13 units for exhaling, 16 for inhaling.

I have been suffering from similar problem but not that extreme from last one and half year. I hope people here will provide some info that would be useful to me. Doctors are not helpful.

My problem started when switched my job in April 2014. Before I was perfectly fine. The office space was not properly ventilated. Initially (from the very first day) I used to feel very drowsy in the office and fine outside. After few days the problem became permanent even I am not in office. I was feeling like mentally blocked. Also started feeling disinterest in everything. After a month in that office, I had to travel to USA for a month in the same company and there I got severe itching and doctors there gave me some antibiotic. After taking the antibiotic, my problem even got worse. Then I had severe headache and severe metal fatigue. After returning from the US, I had to go on unpaid leave. It was feeling heavy brain fog, feeling extreme stress and metal fatigue all the time. I had visited three neurologist. All of them prescribed anti depressant. I even took an antidepressant (setraline) and it made me even worse after taking two and half months. I had got few check up done in August including MRI. The doctor told me that the MRI is normal. I have also visited few ayurvedic doctors and the ayurvedic medicine worked to some extent. In fact I am continuing the ayurvedic medicine till now. The ayurvedic medicine at least not letting the problem to get more worse. I had difficines of vitamin B12 and D and taking injection for B12 and supplements for vitamin D. Later I consulted a psychiatrist but again no help. The psychiatrist got me the EEG test which was normal. On the net I found a guy ( who is not doctor by education) describing about anti oxidants and its role in brain fog. I consulted him and he prescribed different kind of stuff (mostly for antioxidant functions) that seemed to help a bit. At present I feel little better than but the problem still very significant. Neurologists have nothing other than antidepressant to prescribe and antidepressant has worked negatively. Right now taking Ayurvedic medicines, vitamin supplements and antioxidant supplements.

I have not got the sleep test done yet. None of the doctors I visited asked to me to do that. Right now I am planning to get that done too. Is there any test that I can get done?

When you said it happened after you changed jobs and new office was not ventilated and you were feeling drowsy, I first thought maybe it was carbon monoxide poisoning. However, if it is still happening, I am not so sure anymore.

Source: Not a doctor. Just scared of carbon monoxide poisoning. You know, going to sleep and never waking up.

I can rule out the co poisoning because I was the only one who got affected in that office. Others did not have such issues

Get with a doctor who has experience dealing with autoimmune issues.

Anecdotally, I can say your issues are consistent with Celiac disease. Headaches/migraines, depression and "brain fog" are some of the most common symptoms. Your B12 and D deficiencies are also suggestive of malabsorption of nutrients in your digestive tract.

It isn't necessarily Celiac (I have a bias here since I was diagnosed with Celiac/gluten intolerance in 2009 with symptoms quite similar to yours), but I would get some tests from a doctor who can look at and rule out GI parasites, thyroid issues, Celiac, Crohn's/colitis (especially if you have GI issues like gas/bloating as well.)

Also, if you have been in an area with ticks, get checked for Lyme disease--the symptoms you describe are also indicative of Lyme, and the "bullseye" spot on your skin from the tick bite doesn't happen to all Lyme patients.

Good luck!

If it is indeed not some weird infectious disease you can try https://en.wikipedia.org/wiki/Phenylpiracetam It wakes brain up. Just don't overdo it. And exercise. Do some cardio. Blood flow is essential for brain.

How old are you? Do you have any pains in your abdomen? My case started like yours, I was fine and then suddenly I started getting really tired and felt like I was mentally in a cloud. My work suffered dramatically. I had minor pain in my guts (that occurred sporadically) and usually went away when I went to the bathroom. I chucked this up to constipation. After mentioning this all to my doctor, he recommended me to a Gastroenterologist, who, after a colonoscopy and an upper endoscopy, identified ulcerations and inflammation in my bowels. I ended up having a weird case of Crohn's disease. This struck me as odd, because my guts never really were the issue (I was constipated rather than the constant diarrhea), it was mostly my head. But it turns out the Crohn's can lead to deficiencies which can affect your mental state, namely fatigue and cloudiness. After a month or so on steroids (endicort), I started feeling much better, although I am still no where close to where I was before this all started happening. The reason I being up your age, is that Crohn's usually starts in people who are in their twenties.

Not a doctor obviously, but you can try recording yourself in your sleep and listen to how you breathe. If you hear what sounds like snoring followed by abrupt silence there's a good chance you've got obstructive sleep apnea and the sleep test should confirm it. At the very least you might find something else that's happening and give you a clue.

Such a fascinating article.

1) It makes the brain sound like a Kafka queue that kept growing but never had any consumers, until his tumor was removed.

2) It's interesting how there was a disconnect between his active consciousness and whatever other process was reindexing/reinterpreting his raw memory data. Sort of a nod to my napkin theory about the brain being a multi process machine.

3) The fact that the memories didn't replay in order kinda makes sense. It's like a natural fact of concurrency; you don't know what order the output is going to show up in, unless you sort the data afterwards, and by sort I guess we mean looking at the raw data and stitching it together (like a binary sort).

I think it's better (or just more intuitive, given my interests) to describe the brain as a distributed system than a single multi-proces processing Von Neumann type machine - there are components in different parts of the brain that do work independently and then send the results over the "network". Some network failures and node outages are... not dealt with gracefully.

I love stories like this. By studying what happens to the brain when something goes wrong we gain a sliver of insight into how the brain works. In this case he was able to store memories but he could not retrieve them. When the cyst was drained he almost immediately gained access to all those memories again. Fascinating!

I think it's a complete script for an oscar-level movie and I would love to watch it.

Check out Memento, total mind-fuck of a film, it's about a man who has short-term memory loss like OP, and to keep the audience on the same page has him the scenes in the movie go in reverse order. Sounds weird but it works VERY well.

Isn't that statement pretty spolierly?

The plot device, and the reason for it, are established within the first few minutes of the film.

Great read! Definitely a weird/surreal experience to have.

I'm wondering if there were inconsistencies / mix ups across memories or if they all came back as they actually happened. Right now he's assuming the flashbacks actually happened just as he is seeing them (and correlating with people to confirm), but I'm curious to see if his brain made up or mixed up memories.

All personal experiences aside, the conclusion is that cyst squeezed hypothalamus which resulted in malfunctioning. Or in short, "Malfunction of compressed brain tissue". What is the reason for that? Are neurons somehow discharged when they are pressed closer to each other? What's the physics/chemistry/biology behind this?

I'm not an expert but neurons aren't like wires, they send electrochemical signals.

You can squeeze a copper wire all you want, short of breaking it, and electrons will still flow.

But in neurons, it's actual ions that have to flow for the signal to travel along the axon (Ca and K)

Also, communication between neurons is via neurotransmitters, that diffuse in the synaptic gap between neurons, and most of these are relatively large molecules.

Restricted blood flow could contribute as well, since it would impair cellular respiration in the neurons as well.

Given this, if you squeeze a brain structure, it seems to make sense to me that signalling would be degraded.

Edit: A previous version of this comment stated that the ions used for signalling were Na and Ca, that was incorrect, the ions are Na and K.

Reading this it looks like the brain has the ability to discover and integrate memories that exist within it but may not have been organized or indexed properly. The analog I draw is if you were to insert an SD card into a computer and it reads and indexes everything it finds on the card so that from that point on you can retrieve all the files on the card just like the rest of the computer. Now all you need is a way to "inject" pre-formed memories into people, and you would be able to learn a language, or memorize an encyclopedia, or become a doctor instantaneously.

Well, maybe. Skills are not necessarily the same thing as memories. Memorizing anatomical and surgical manuals will not give you a steady hand or a deep understanding of how much pressure to apply to make a millimeter-precise incision.

NPR had a related story about a stroke taking away part of the language processing center for a while. After the patient could express themselves again, they report a stillness in the mind during the loss period. Many, if not all of us, think by talking to ourselves in our minds. And this internal voice is something hard to turn off at will as any serious meditator knows.

Wow. I didn't see that last line coming. Bravo.

Can I recommend the book (not the film, which I hear does not compare), 'Before I Go To Sleep' by S.J. Watson. It deals with memory loss in a fascinating way. One of the few books I've read in one sitting.

I sometimes i think "if this was the last day of my life what would i do , who would i spend it with" And it's all about love , I'd spend it with my family and gf , and maybe write some code or some silly app for the last time. It's important that we keep in mind that life isn't a limitless resource , and "nobody will remember your ppt presentations when you're gone"

Anyone have a copy of the story that works for bad people like me who block ads on iOS? The link on this post is to a summary that asks me to click a link in order to read the full article. Unfortunately the button seems to be non functional for my ad blocking self.

Archive.is is a magical tool. Use it forever. https://archive.is/IcD1B

Unless you live in Finland, where it's 451'ed because of -- as I understood -- a personal grudge its operator has against our country. :)

it works with instapaper, or long press the reload button to open without content block

If you hold down the Safari reload icon on iOS you can temporarily disable your content blockers on the active page.

I'm on Android and not blocking ads, but the "read more" button is still nonfunctional. How exasperating!

Without further ado: phkillscancer.com

This title is poorly worded. The singular 'it' leads the reader to think that the tumor came back, when it was the memories that came back. 'They' or 'it all' (as was in the article's title) would have been more appropriate.

I thought so too...

Very interesting read though... Dementia is something I hope to never experience and this sounds worse.. The knowing afterward about confusion or awkward interactions... My wife and I have a half serious suicide pact in case that does happen

Amazing story nonetheless

Ah, you're right. We did an s/it/they/.

I had the same experience. Anybody who had it or is 'interested' please contact me at pigeon@tutanota.com

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