What's wrong with my brain/memory... ?
February 11, 2019 11:57 AM   Subscribe

In 2016, I had a TIA, and immediately started suffering memory problems (details below the fold). I've had an MRI, CT Scans, EEGs, tests for early Alzheimer's, and every other test imaginable, it seems. Some of them more than once. Doctors tell me nothing is wrong and the problems I'm having aren't "really" memory problems--though are reluctant to call them something else. They suggest perhaps I'm "just not paying attention." I've never had difficulty paying attention and my memory degradation was overnight and not gradual. Any assistance appreciated...

Doctors also say memory and TIA/stroke are not connected.

Here are some examples of the memory issues I have:

- Forget names and other things short term

- Have forgotten names of my closest friends and people I see regularly and have known for years

- Regularly invert the order of streets in a neighborhood I've lived for 14 years in a city I've lived in for 50 (so, believe major street X is west of major street Y, when the opposite is the case and both streets are walking distance from my home).

- Struggle to recall common words

- Regularly cannot recall the names of very famous people when watching movies with them in it (Brad Pitt, Edward Norton, Robert De Niro, Scarlet Johansen, etc) after a lifetime of being able to name even the most obscure actor in pretty much anything.

- Once house sat for someone for a month. They had dogs, cats, and chickens. Gig went smoothly. Had a 1 week break and returned to continue the job. Managed to forget that chickens were in the back yard until the rooster crowed the next day, even though I'd fed them and collected their eggs daily for a month a week earlier.

- Walk my dog with the same people every day for years. One friend, who had two dogs, had a dog pass away. Walked with him and his now-one dog for a year, went away for 2 months, returned, saw him, expressed concern he only had 1 dog with him. What happened to other dog, I ask?

- Have decided to go out for dinner and start walking to the restaurant I've been to many times. Can't find the damn thing and then realize it's not actually in the city I'm currently in. Once even remembered looking at an apartment 20 years earlier in a neighborhood I was walking through and when I couldn't find he building realized it was another city.

- Hungry and decide to go to eat. Sit down at restaurant, order food, and my phone rings--someone is buzzing the intercom of my front door. Who is it? Oh, it's the pizza I ordered 30 minutes ago when I was hungry, just before I decided to go to the restaurant because I was hungry.

- Once stood in the shower with shampoo in my hair and could not figure out how to get the soap out. Took me a good minute to realize I could take a step forward to put my head under the tap or use my hands to splash water onto it.

- Walking up stairs and find myself with one leg in the air and takes me ten seconds to realize "how" to continue walking up the stairs. (This has happened 3 times.)

To me, none of these things are "normal" and collectively they're making my life a living hell. Doctors say I'm fine. (I have been to three specialists: 2 x stroke, memory/neurologist).

Today, the neurologist basically told me not to come back, that there's nothing wrong and no need for further tests or visits.

Prior to the TIA, I had no memory issues, never got lost -- in fact had excellent direction and recall, and certainly never had any motor issues like with the stairs and shower.


I know, YANMD.
posted by dobbs to Health & Fitness (19 answers total) 3 users marked this as a favorite
I don't know if this is helpful, but a lot of the things you describe sound like me. I'm terrible with names, and really struggle to remember basic details about people who are very close to me. I've never had the motor or confusion issues like your stairs and shower examples, though I did once forget the name for a bathrobe and the best I could come up with after several minutes of dredging was "water cloak". This is how I've always been, and it hasn't gotten appreciably worse now that I am in my 40s.

I say this because the reason your doctors may not be able to help is that this is within the normal range for many folks. As far as what you can do about it, I will say that my forgetfulness/attentiveness tend to get worse when I am dealing with deeper than normal anxiety/depression. Is that something you have ever looked into?
posted by Rock Steady at 12:14 PM on February 11, 2019 [2 favorites]

Has any of those specialists done general bloodwork to look for things like vitamin deficiencies, hormone issues, etc.? I suspect that a neurologist wouldn't because specialist. I know it happened overnight, so maybe some medication you took at the time of the TIA messed with your chemistry?
posted by wellred at 12:15 PM on February 11, 2019 [4 favorites]

They’re telling you *stroke* isn’t connected to memory issues? You’re kidding. Someone will surely reply in much more detail soon, but here’s a summary from the Canadian Heart and Stroke Foundation in the meantime.
posted by delezzo at 12:16 PM on February 11, 2019 [14 favorites]

IANYD, but IAANAI (also not an idiot). There's nothing wrong? You forgot how to walk up stairs and rinse shampoo out of your hair and there's nothing wrong? There's something wrong. And TIAs are absolutely associated with memory loss. https://dailycaring.com/tia-is-a-warning-sign-of-stroke-and-vascular-dementia/
posted by Don Pepino at 12:17 PM on February 11, 2019 [14 favorites]

These symptoms sound incredibly familiar to me, as someone with AD/HD. The difference, of course, being that they're something I've lived with my whole life and grew up learning how to adapt. I can imagine how distressing they'd be as something acquired suddenly.

Anyway, I remember that when AD/HD was first discovered it was called "Minimal Brain Damage" as it mimicked the symptoms of small amounts of damage with no known trauma to cause it. So I'm sorry, maybe that's what happened to you? As a positive you could go to a specialist armed with the knowledge that that's a possibility. It also means you might want to explore seeking help from a psychiatrist or psychologist: they might come at your problems from a different perspective and have experience dealing with them: that could mean learning coping skills, or even medical treatments like the sort us ADDers use to be better with the full knowledge that we'll never be fixed.
posted by traveler_ at 12:19 PM on February 11, 2019 [2 favorites]

The following may not apply to you (apologies if not), but I've been told that the kind of forgetting and distraction you describe can be caused by anxiety or depression (see above), and also by stress. And it's anxious and stressful as hell to have to lead your life thinking that something new is wrong with your brain and that it's getting worse. Maybe consider a therapist rather than a brain doc. And good luck.
posted by JimN2TAW at 12:20 PM on February 11, 2019 [3 favorites]

Down through the famous people one, I thought, well, we all do that from time to time and maybe you're just more conscious of it now so it feels like there is more of it. But the rest of the list feels different. Some of these sound like things Alzheimer's patients do or experience.

TIA's in rare-ish instances DO lead to memory issues, it sez here (from Cedars-Sinai which is pretty damn reputable in this field). "Difficulty deciding what to do next" is right there on that list.

Get yourself to Cedars-Sinai if at all possible, or someplace with a similar reputation.
posted by beagle at 12:21 PM on February 11, 2019 [5 favorites]

Have you been seen by a neuropsychologist, who would administer behavioral tests of memory? It is often possible to detect memory and other psychological deficits with a neuropsychological test battery that do not show up on imaging or electrophysiology tests.
posted by Lutoslawski at 12:33 PM on February 11, 2019 [10 favorites]

alot of your issues with attention and completing tasks sound like not just memory problems but what psychologists and neurologists call "executive (dys)function", especially things like the shampoo incident. and it's definitely linked to TIA

sometimes it gets better some months after stroke, sometimes it doesn't, but maybe you are stable in a new normal at two years out, brains are plastic even in older adults and ymmv

If your doctors are not being helpful you can always seek out third opinions for neuropsych testing which is what you really need to confirm any kind of cognitive impairment. But keep in mind that without a personal baseline pre stroke, you will always be evaluated wrt population averages and your impairment may be very disturbing to you and causing difficulty but may not rise to the level of being out of the range of normal on test scores. only someone certified to do neuropsych testing could tell you (with a full battery that should take hours, not 5 minute mental status checks)

what do you hope to get out of a diagnosis? just a medical explanation for the difficulty you have with everyday tasks? that might be something you can get out of more competent doctors/psychologists but keep in mind it might not change your treatment options.
posted by slow graffiti at 12:42 PM on February 11, 2019 [4 favorites]

Some clarification:

- I have suffered from depression and have tried various meds over the years which don't seem to help much. This past year, though they improved my mood, they did not help with any of these issues. Today's neurologist just suggested I get my doctor to try another anti depressant as she can't see what else it could be.

- never suffered from ADD or ADHD though the doctors have mentioned those as being causes of some of the things I've experienced, but they don't think I suffer from those conditions

- I am in Canada. Cedars-Sinai is not an option, but have been told by multiple doctors (my own included) that the specialists I visited are reputable (they were at Toronto Western and St Michael's in Toronto)

- the doctors aren't suggesting my issues aren't troubling, just that none of the tests reveal any problems and as far as they're concerned my brain and heart are in excellent condition.

- re: behavioral tests of memory, I'm not sure of the name of the tests, but I've had 4 different memory tests. 3 of them were basic, like the one they made fun of Trump taking with the clock and animals on it, and the other was much more involved, over multiple hours and involved various puzzles and a computer screen and audio. While I'm taking the tests, I feel like I'm failing them, but they always tell me afterwards that I did well.

- they did bloodwork once to an extreme degree, withdrawing 13 vials of blood from me in one sitting. Everything came back normal.
posted by dobbs at 12:52 PM on February 11, 2019

And thank you for the answers. Will read all the links provided.
posted by dobbs at 12:54 PM on February 11, 2019

I don't know if it will help any in getting taken seriously, but you might consider sorting your examples into a few categories - short-term, long-term, motor/routine, etc. Sometimes doctors (and people in general) will look at your list, see something that seems commonplace enough, and not pay sufficient attention to the rest of the examples to really understand the severity or range of symptoms. So try separating into different categories, and put the most extreme ones first.

You might also want to describe, when discussing a given incident, how it played out. For example when you asked your friend about his other dog, did you realize you'd made a mistake immediately after? Did your friend have to remind you? When you realized your mistake, did you then remember clearly what had happened over the past year, or are those memories still hazy? This might help to differentiate between memory and attention issues.

Stress the sudden onset as soon as you being the subject up, as well as the effect on your quality of life.

It is possible the problem is more one of attention than memory (although your example about forgetting streets doesn't fit in well with that). But that's not a useful answer to you: if it's your ability to pay attention, or general executive function, that's been damaged - that's still a real problem that a good doctor should take seriously!

Think about what you want to ask for. I assume your interested in a diagnosis, but since you've already done some rounds and not (yet) had any success in tracking down the cause, you should also ask for therapy (of the kind given to patients after strokes, or occupational therapy, or whatever it is that your doctors feel would be most helpful in regaining functionality).

Finally, as someone with terrible short-term memory, ADD, and lots of absent-mindedness - many of your examples are much more extreme than what I'm used to in day-to-day life, and I think you're right to take it seriously. I'm sorry you're going through this - it's not fun at all to deal with a brain with a mind of its own. For whatever it's worth, you have a great deal of company in this.

Finally finally, make sure you're sleeping well. I know my memory and attention issues worsen with fatigue.
posted by trig at 12:56 PM on February 11, 2019 [6 favorites]

On preview, since it seems like your doctors have at least taken things seriously enough to test multiple things and sound like they're stuck, I'd recommend (a) asking for the relevant kind of therapy to regain functionality and/or learn to work around this new condition; (b) keeping a record of incidents (and maybe asking someone you're close to to do the same from their perspective). You want to be able to notice of things are getting worse, or better. All the more so if you end up changing medications.

(Also, the most extreme attention lapses I've ever experienced - the kind that make for really strange stories - happened when I was on meds. Maybe consult with your psychiatrist about this as well?)
posted by trig at 1:04 PM on February 11, 2019 [2 favorites]

I had a stroke a couple of years ago and have since been suffering from similar (though not as severe) symptoms. I saw a neurologist at Hopkins who confirmed, through a battery of non-invasive tests, that I definitely had a measurable decline in mental function. Unfortunately, she was unable to provide any useful course of action, although she was fairly optimistic that function would gradually return over time. I would say she's been correct about that, though the return has in fact been very gradual, and I am still nowhere near where I was before the stroke.

If doctors are telling you that memory loss has nothing to do with strokes, you need to see someone else, preferably a neurologist who specializes in this sort of thing. Two Johns Hopkins neurologists, my own internist, and and an special education educator (a PhD!) have all confirmed the stroke, and no one was surprised in the least. However, they all gave different advice:
  • Neurologist #1: Not much I can do, and whatever shape I'm in after nine months is permanent. I have found this was a bit pessimistic.
  • Neurologist #2: Things will gradually improve, and I should exercise my brain — she prescribed reading — as much as possible. I will add that she was a much more noted doctor than Neurologist 1.
  • Personal internist: Meh, I'm just getting old (I'm 66). He's about my age and also starting to suffer from memory loss, without a stroke. Still, I used to have a fantastic memory, and he didn't, so I'm taking his diagnosis with a grain or two of salt.
  • Speech therapist: Things may improve, but I can help them along by reading, and doing crossword puzzles.
I do believe that reading helps, if only because practice makes perfect. My reading level has definitely improved, with practice, since I started working on it, and it's something that can easily be done wherever you are. Another thing that is working for me is Wikipedia. When I can remember everything about a famous person but their name, I look them up (usually by a film I remember them in) and relearn the name. This seems to being having a good cumulative effect.

In addition to memory loss, I also have similar experiences to you as far as temporarily forgetting everyday things (like which door to go out, or what things I need to bring with me in the car, or why I came into a room). This I tend to ascribe just to getting older. As the saying goes, if you're holding a key in your hand and can't remember where it goes, that's OK. It's when you hold the key in your hand and don't even know what it is that you're in trouble.
posted by ubiquity at 1:41 PM on February 11, 2019 [2 favorites]

I'm undergoing a similar change due to a medical condition that required major surgery and major follow up drugs. Things I am reading indicate that the similar symptoms we are experiencing could be related to inflammation. Sometimes I get a big medical does of an anti-inflammatory and my mind becomes noticeably sharper for a while.

Inflammation is not well understood but appears to have a substantial effect on the body and mind more than we understand at present.
posted by Thella at 3:29 PM on February 11, 2019 [2 favorites]

Have you been bringing another person with you to all these appointments? I would recommend that to anybody, but especially to someone with memory problems. When you report what doctors have told you, I'm not sure whether you're giving close paraphrases or more loosely interpreting what you understood them to mean. Either way -- and even if there are no misunderstandings in either direction -- I do think it would be very useful to you to have a witness there with you. Doctors put more thought and care into their diagnoses and treatment plans when someone besides the patient is watching and listening. And many doctors will listen to a patient's companion, believing in their greater objectivity, when they won't listen to the same facts coming directly from you.
posted by queenofbithynia at 4:01 PM on February 11, 2019 [7 favorites]

I don't know if it will help any in getting taken seriously, but you might consider sorting your examples into a few categories - short-term, long-term, motor/routine, etc. Sometimes doctors (and people in general) will look at your list, see something that seems commonplace enough, and not pay sufficient attention to the rest of the examples to really understand the severity or range of symptoms. So try separating into different categories, and put the most extreme ones first.

Lumosity might help with sorting out your various domains of concern. It is not a scientifically valid assessment, but I do feel like medical providers listen when I start talking about things like "working memory" and "selective attention," which are some of the categories of the games. I also like the data collection and graphs in the subscription version, because I'm recovering from the removal of a meningioma that was sitting on my frontal lobe.

I definitely think you need a specialist who can address your concerns, because if it's not a brain or heart issue, I've also learned during my recovery that there are several major organ systems that can rise up in rebellion to cloud one's mind, including kidneys, so you may not have found the right type of doctor yet. It might be helpful to consult with a physiatrist, because as a rehabilitation specialist, they may be able to explore other physical issues that may be involved.
posted by Little Dawn at 5:47 PM on February 11, 2019

I recommend you google each medication you’re on and read all the possible side effects, even the rare ones. I was on beta blockers for a few years and it ruined my memory to the point that I sometimes couldn’t remember how to get around my hometown. I saw a bunch of doctors, had a ton of tests done, with nothing conclusive. No one mentioned that this was a possible side effect of the medication, including the doctor who prescribed it. The drug I was on is not at all uncommon, and it was the only thing I was taking. I have to conclude that they just don’t know.

To be fair the memory issue was listed as rare, but still...

Also, but this is more in the realm of nobody really knows, if you have any bad mold problems where you live that could be related.

And lastly I second the idea of having someone come with you to doctor appointments to help record the conversations and advocate for you. Close family or friend, someone who can be with you consistently for these things. It can be super helpful.
posted by DrumsIntheDeep at 6:08 PM on February 11, 2019

I had TIAs not a major event. I definitely noticed significant mental impairment and brought this up with my doctors. It took a while to get them to take this seriously until I got a neurologist who treats my case and me seriously and it's still not where I wish it was because with any new doctors, I have to restart.

I think they treat such extensive damage routinely that they figure a reasonable baseline is a sufficient win, while to you, a noticeable difference is a a significant loss.

What helped me was to contextualise it - I was going from reading a thick novel in a day to struggling to finish a lightweight magazine. I could do a lot but I had lost a lot, and once my neurologist was convinced there was a significant loss *to me*, he was more sympathetic and a bit more aggressive in treatment. That sort of snowballed to me feeling more confident asking for more help from other doctors and being kinder to myself about my recovery too.

I absolutely also second the patient advocate if you can get someone you trust not to talk over you but to listen and help. Also the rheumatology/immune system is a great place to go. There's a lot a rheumatologist can investigate for inflammation.

I'm pretty close to where I feel I used to be, but I have to make sure I sleep a lot and any illness makes me basically a cabbage-brain instantly. It took a long time though. Young stroke survivors have a very different outcome from elderly stroke survivors so when you read medical papers, always look at the age of the people involved. I found first-person accounts by young (under 50) stroke survivors really encouraging.
posted by dorothyisunderwood at 3:11 AM on February 12, 2019 [2 favorites]

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