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Episodic "brain fog", fatigue, coordination issues post AVR surgery?

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Malleus

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Joined
Apr 27, 2018
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Evanston, IL
I had my bicuspid aortic valve replaced with a bioprosthetic in May 2019. My early recovery went great, but an arrhythmia developed after a few weeks and I was on amiodarone and Eliquis for almost three month. In the fall of 2019, I began having week-long episodes of fatigue (sometimes extreme), bad brain fog, anxiety, and decreased motor coordination. Then I'd get better after a few days, and be fine for several weeks, sometimes longer. But this cycle has repeated to this day. Last week I actually passed out for a couple seconds, just after entering the house, fell against a table, and smashed into a window.

So far, doctors have been stumped. I'm getting MRI's later this week, lots of blood work, and a neurocognitive assessment as well. These will be followed up by neurologists over the coming weeks.

Has anyone else experienced severe episodes like this post-surgery? I figure this group is great for rare and not-so rare consequences (some doctors I spoke to had never heard of post-AVR "brain fog" which seems to be quite common). Thanks in advance!
 

tom in MO

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I cannot help with your specific difficulty. If they are sending you to neurologists, it sounds like they don't think it is the heart. If you haven't run this past your cardio you might want to. When it comes to "pump-head syndrome" your symptom of fatigue and blackout don't match what other people have experienced. I've reported my pump-head problem to a few doctors and cardiologists and a neurologist have heard of it, but not my internist (he's young but smart). I do not think it is common, but is certainly known by doctors who deal with patients on heart/lung machines.

Good luck.
 

Iggy

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Sep 14, 2019
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Hello Malleus, Im sorry to hear that you have to go through this.
I have experienced once something what you described. After my second MVR, about 3-4 months post-op I started noticing some moderate fatigue durning the day and some weird vision which back then I attributed to have ing to do with Metoprolol. It got worse in the begging of summer and I had been of the drug for about a 1.5 months, and due to covid I decided to wait it out and see if I get better. Back then, I had a really nice workout on Monday, and by Thrusday my fatigue would progress to the point when I was super lightheaded all day and almost felt like I could pass out any minute, I lost appetite over the weekend that week, and headed to the ER on Monday afternoon of the following week, because by then I was freaking out thinking I was going through a HF. My blood work came out normal, as did the echo. I felt much better a few days later. I still don't know what it was. I tend to think maybe it was a cold, mainly because of the fact that I felt high-energy at the beginning of the week, as mentioned.
However, I have been going through this "looping" pattern with my sleeping routine and other symptoms that I don't know how to address: flushed skin, internal vibrations that set on and keep me awake when I get in bed, and frequent urination, sweating. Doctors don't know what it is. Might be related to ANS. For my symptoms I consider seeing a neurologist and perhaps a psychiatrist.
Hope you feel better.
 

ZachL

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Jan 12, 2018
Messages
14
Location
California
You could be experiencing migraines that do not have the pain of a headache attached. They could also be ocular migraines. Do you ever have vision disturbances before you get "brain fog"? or fatigue?

Not sure if this is your issue but might be worth looking into.
Migraine thread
 

Malleus

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Joined
Apr 27, 2018
Messages
7
Location
Evanston, IL
Thanks for the info, Iggy. For my first several episodes, I thought I kept getting frequent colds since our kid is in daycare (a hive of infection). But as things went on through the spring and summer with no explanation despite visits to my GP, cardiologist, and even an unrelated stay in the hospital, I've been searching for another explanation than colds or something to do with my heart.

ZachL: Yes, I've had migraines since the end of college. In many cases, they are pure visual aura with little to no pain. For some, I'm left with lingering mental fog, fatigue, and even slow speech that can last to a degree for up to a day. None of those have had effects that lasted close to a week. However, I *did* have migraines almost every day for about a week before this last episode, so that might suggest some connection. I'm afraid I haven't kept a diary, so I don't know if anything like that happened to me before. Thanks.
 

KatherineA

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I had much the same symptoms, fatigue, brain fade, unable or unwilling to try certain tasks, especially numerbers, like accounting, that I’ve never liked to do. My surgery was Jan 7, 2020. It gradually got so bad by April, I was setting alarms at 9 am to get up and take an easy traditional yoga class that seemed to get me jump started for a few hours at least. By June the fatigue changed to a malaise, depression. I’ve never been depressed before, anxious yes. But not this terrible feeling of hopelessness. I was constantly on the couch just sitting or crying. I even could not regulate my bladder function by that point very well.

One day in July, I forgot the second Metoprolol of the day that I usually did with dinner. The next morning. I was not so foggy. I researched the Metoprolol and decided to track my vitals before and after taking it for 3-4 days. It was really dropping my heart rate. The oxi meter even showed lower oxygen rates. I had the standard blood tests all normal, no anemia etc. no physical reason for this inertia. In addition, i learned metoprolol does effect the brain stem and it’s intricate functions for some people significantly.

I never had issues with irregular beats after surgery so called my new local cardiologist with my days of data and asked, why am I on this still? And, said I can’t go on this way. I’m too depressed and I think this is why

It was originally prescribed by the surgeon, not by my local cardiologist. My local guy said ok with him to taper to 1 a day and then quit entirely so long as I closely monitored BP etc. Within 2 weeks on one pill I was functional again. And could think. After stopping, I’m waking at my old 6-7 am no alarm needed. And off the couch, and writing, doing number things etc again

Long story short, Wile Metoprolol is an older standard drug, it isn’t right for everyone for a long time and worth a look to check dosage etc.
 

slipkid

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Schwenksville, PA, USA
...Long story short, Wile Metoprolol is an older standard drug, it isn’t right for everyone for a long time and worth a look to check dosage etc.
Oh yeah, I very much identify with your experiences on metoprolol. I was nonfunctional when first put on it after a stent last fall. I had less than zero energy. Was sleepy all the time. Very difficult to concentrate and DO anything at all. Had multiple episodes of not even knowing where I was while driving, struggling to recall where I was going, or why I was on road such & such and how that road connected with where I was trying to go. It was scary.

Could barely even force myself to get out of bed most days - had to delay getting back to work because I could not function the way I was. Depression as well seemed to be the order of each and every day, again too difficult to even get out of bed. Noticed it all starting within 15 minutes of taking the 1st pill. Yet Drs insisted I just needed to get out & exercise. Unbelievable. Finally was able to at least function again after the cardiologist had me cut the pills in half. The turnaround was very dramatic although I still had some sluggish leftover side effects which I did not like. Only felt normal after weening myself off it entirely.

P.S. A very strange side effect of metoprolol was one I did not realize was due to that drug until I researched it on-line and found multiple people complaining about it and then knew why it started with me as well - horrible, horrible, intricate, very realistic, intense as **** nightmares. One of those I had including auditory hallucinations which were particularly terrifying. If those continued in a waking state I would have been driven to kill myself!
 
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KatherineA

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S. A very strange side effect of metoprolol was one I did not realize was due to that drug until I researched it on-line and found multiple people complaining about it and then knew why it started with me as well - horrible, horrible, intricate, very realistic, intense as **** nightmares. One of those I had including auditory hallucinations which were particularly terrifying. If those continued in a waking state I would have been driven to kill myself!
OMG. Yes. But I had visuals mostly relating back to breathing tube, panics and the like. I felt like I had to learn to sleep again or go to sleep again. I sought out a trauma specialist that used behavior techniques. Doc thought I had post surgery ptsd. The specialist helped some but it wasn’t until a couple weeks after I took the last One of those darn pills, that I felt I thought and slept “normally”.
 

slipkid

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Something else I noticed about those nightmares - they would be only a few minutes after I fell asleep (they would make me scream/moan which would thankfully wake me up). Normally I don't really start dreaming until much later at night, or be towards the morning when the alarm goes off. Not as soon as I close my eyes.

The 2 most memorable nightmares were the first 2 nights on metoprolol. Both were "waking" dreams, in that in both of them I was asleep in my bed then (thought) I woke up. The first one I woke up and my left ear hurt like crazy. I touched it and it was soaking wet. I looked at my hand and it was covered in blood. I stuck my finger in my ear and I could feel a piece of galss in there.

I then realized somehow that my bed was full of broken glass. I cursed myself for bringing a glass with me to bed (something I have never done in my life - not cursed at myself but bring a glass in to bed!!). Also I was mad because the glass was an old favorite of mine dating back to the 1970's, that I had as a kid, with stuff relating to my favorite sports team on it, somehow I "knew" that was the glass that I broke wihtout even seeing it.

Of course that made no sense that that one glass could have filled the bed with broken shards of glass, but that is how dreams go. So I rolled as slowly as I could to not cut myself on more glass and turned on the light on the nightstand. But the light would not turn on right - it was hardly even lit up at all. Had a strobe effect as well. I could not see where all the glass was....I picked up a flashlight also on the nightstand and turned that on. But it behaved the SAME way as the electric light. Could not get it to work right.

I felt I had to get that piece of glass out of my ear. I had to get to the bathroom to look in a mirror and figure out how to take it out. Next thing I knew I was out of bed walking to the bathroom but the floor was not my floor. It was covered in rocks and very difficult to walk on, especially since I could not see. Somehow I made it to the bathroom, turned on the light in there but same thing - a dull flickering light only. I could not see well but felt around in my ear and pulled out a broken piece of glass - but cut my hand in doing so.

I felt that things were not right. The whole thing made no sense. Could I be asleep? Next thing I knew I was screaming and awake. My ear no longer hurt. I was not sure if I was in a bed of glass or not. Rolled over and turned on the light. Knew it was just a nightmare (I hoped it was over). Looked at the time - was surprised to see it was only about 10 minutes after I had turned the light off in the first place!

The next one was similar. I was in bed sleeping but heard a devilish maniacal laughter in my right ear. It was on a repeat cycle of laughing which would last about 15 seconds then start again at the beginning. It terrified me and "woke" me up. I realized I had left the TV on and must have fallen asleep without turning it off. The laughter was just whatever the show was. What was playing looked like an old movie, was in black & white. I tried to make the laughter stop by using the TV remote to turn down the sound but turning down the volume made no difference. Then I wondered why it was only in my right ear and not my left. Could I be possessed/haunted in some way by a demon???? What the eff was going on. The TV remote would not let me change the channel or even turn the TV off. Things made no sense. I had a thought that I must be dreaming/having another nightmare. Wanted badly to wake up but could not. Finally I did wake up, to the sound of my muffled voice screaming again. The TV was off, and the laughter was gone. Looked at the clock. Again only about 10 minutes had past since I turned off the light. Metoprolol had struck again. I told the nurse in the Dr's office (my PCP) about these nightmares, and even tried to tell the cardiologist. But none of them suggested it could have been anything to do with metoprolol. I only found that out a few weeks later I started reading up on it.

Sorry to ramble but starting to talk about this crap brought it all flooding back. These drugs we get put on wreak all kinds of havoc on our bodies (& minds) but Drs simply do NOT want to even hear about it, at least that has been my experience, multiple times....
 

KatherineA

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These drugs we get put on wreak all kinds of havoc on our bodies (& minds) but Drs simply do NOT want to even hear about it, at least that has been my experience, multiple times....
It does all come flooding back sometimes. I can relate and I’m sorry. I hope it starts to fade away better and Altogether for you. And no, I think that doctors don’t like to hear about drug side effects or strange symptoms especially when a concern is about an “old” accepted drug.
 
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tom in MO

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Messages
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I had much the same symptoms, fatigue, brain fade, unable or unwilling to try certain tasks, especially numerbers, like accounting, that I’ve never liked to do. My surgery was Jan 7, 2020. It gradually got so bad by April, I was setting alarms at 9 am to get up and take an easy traditional yoga class that seemed to get me jump started for a few hours at least. By June the fatigue changed to a malaise, depression. I’ve never been depressed before, anxious yes. But not this terrible feeling of hopelessness. I was constantly on the couch just sitting or crying. I even could not regulate my bladder function by that point very well.

One day in July, I forgot the second Metoprolol of the day that I usually did with dinner. The next morning. I was not so foggy. I researched the Metoprolol and decided to track my vitals before and after taking it for 3-4 days. It was really dropping my heart rate. The oxi meter even showed lower oxygen rates. I had the standard blood tests all normal, no anemia etc. no physical reason for this inertia. In addition, i learned metoprolol does effect the brain stem and it’s intricate functions for some people significantly.

I never had issues with irregular beats after surgery so called my new local cardiologist with my days of data and asked, why am I on this still? And, said I can’t go on this way. I’m too depressed and I think this is why

It was originally prescribed by the surgeon, not by my local cardiologist. My local guy said ok with him to taper to 1 a day and then quit entirely so long as I closely monitored BP etc. Within 2 weeks on one pill I was functional again. And could think. After stopping, I’m waking at my old 6-7 am no alarm needed. And off the couch, and writing, doing number things etc again

Long story short, Wile Metoprolol is an older standard drug, it isn’t right for everyone for a long time and worth a look to check dosage etc.
I had a similar problem with the same drug. It was prescribed post-surgery by my cardio. He never told me anything about it. The side effects can really be significantly different and psychoactive. It also can effect sexual function. Within 4-6 weeks after surgery I asked to be removed from it and haven't needed it since.

It was good for one thing, my teenage daughter and wife could fight like the proverbial cats and dogs but I had no wish to involve myself to stop it :)
 

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