r/wetbrain • u/spongeaub • Sep 18 '23
Wernicke’s Encephalopathy before 25
Hi all!
I just kinda wanted to tell my story I guess!
I’m a 26 year old female who got WE at (IIRC) age 22 or 23? It came on rapidly due to excessive drinking to the point of vomiting almost every night. Thankfully, I was rushed to the hospital because my symptoms were so alarming and given intravenous thiamine which ultimately saved me from WE progressing to permanent WKS. I just want to harp on how important it is to spread awareness about this disorder because of how quickly it can progress. If I hadn’t shown all three of the main symptoms of WE or if I didn’t have doctors who were able to pinpoint what was going on and implement a 2 week 24/7 continuous (even while I slept) intravenous thiamine regimine, my life and all of my plans could have been taken away from me before I even turned 25.
Often this disease is seen in older individuals, but I just wanted to speak on this because, though much more rare, this disease can creep up on you and permanently destroy your life at a much younger age than even a doctor would expect (my doctors were borderline perplexed).
If you or anyone you know show a combination of the following symptoms and has a history of malnutrition or severe alcohol abuse, immediate action should be taken as this disease progresses rapidly. The thought of losing my life and everything I’ve worked for before 25 terrifies me and terrified my family, and I felt sharing might perhaps somehow raise awareness.
What to watch out for:
Causes: Excessive alcohol drinking, malnutrition, surgery, bulimia
Symptoms: (Wernicke’s triad) 1. Confusion (strange speech patterns, severe forgetfulness, confabulation, disorientation) 2. Ataxia (inability to coordinate voluntary movements, balance issues, with me I was unable to hold myself up on my legs or walk) 3. Nystagmus (rapid uncontrollable eye movements)
Idk if this will help anyone but I hope it maybe gives some hope and awareness.
Be safe out there, friends!
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u/spongeaub Sep 18 '23
Also if anyone has any questions or just wants to vent about their story, my PMs are open 💖
I do have a Psych Masters and am now working on finishing my Ph.D. I hope to be able to use my story to spread awareness about WE/WKS in my field.
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u/Meguinn Sep 20 '23
Hey thanks for this post. I’m going to follow you, as I have a plethora of neurological and vestibular issues. I am sober now from binge drinking, but am always working towards more knowledge on wtf is wrong with me, and how to increase quality of life.
Awareness ftw!
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u/AnPrimDogWhistle Sep 27 '23
Thank you so much for sharing your story! Just sent you a very lengthy PM. I apologize if it's a chore to read, but would greatly appreciate any kind of response. God bless
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u/spongeaub Sep 29 '23
Sent you a very long and messy reply LOL (voice-to-text problems)
God Bless!! 💖
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u/Content_Category3953 Oct 05 '23
Since 5 months i show 2 of them symptoms, only rapid eye movement is missing
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u/spongeaub Oct 09 '23
Have you gotten any medical attention?
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u/Content_Category3953 Oct 09 '23
No + i'm only 16-17 so... yeah.. kinda too young to have those illnesses yk
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u/UsualArgument7932 Oct 13 '23
I’m glad you made it in time. My Ex husband was diagnosed while we were still together. He had neighbors driving to the back of our and just acted like it was McDonalds. The last 14 months were miserable. He would run out of drink and if I didn’t get it for him he would literally call an ambulance. He was violent, mean most definitely not the guy that after 5 years I was going to marry.
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u/Ok_Nectarine_8612 Nov 17 '23 edited Nov 17 '23
I am a heavy drinker and this post made me remember to take my thiamine (8333 percent daily value) and other B-vitamins today. Fortunately, this condition was one of the first things I read about when my heavy drinking began, but have never developed it. Since then, I began supplementing thiamine. I am around 30 and in the past 10 years I have gone through times of not eating and only drinking before (with significant weight loss) and I wonder if things would be different if I hadn't been supplementing with high doses of thiamine. My luck wasn't so good on other alcohol related health issues (pancreatitis twice, gastritis many times, and in 2020 had an episode of stomach bleeding that I never got properly checked out (just started vomiting blood multiple times out of the blue one morning right after getting back from the bar). Pancreatitis sucks and comes on very fast as well, but at least it doesn't damage the brain. It is another health issue that many drinkers are not aware of and you can have attacks in your twenties like I did. It can be long-term disabling for some people though. In some cases, the acute (short-lived) pancreatitis does so much tissue damage that they develop chronic pancreatitis and live their entire life paralyzed by symptoms and pain, often unable to reach their original potential even though their mind is still intact. Those people need to take pancreatic enzyme pills to digest basic food, eat a bland diet, live in constant pain that limits them, and often need insulin for diabetes that results from damage to the pancreas. And it often only gets worse as time goes on for them.
That sounds scary. What does it feel like when it comes on? Anything that affects the brain is nothing to fuck with. I'm sorry you experienced this condition so early but glad you don't have Korsakoff. I know you are articulate, but do you have any slight lingering memory issues at all? Or did you manage to completely skip that without even a subclinical case of Korsakoff?
How does one distinguish between these signs and just being drunk or having typical alcoholic brain fog? Usually I have some lingering brain fog for about a week or two whenever I dry out. Heavy drinking normally causes a mostly reversible (except for maybe visuo-spatial skills) cognitive dysfunction that include memory issues. It is due to neurotransmitter imbalance and changes to the white matter of the brain that are reversible. That isn't WKS , which causes irreversible damage unless you get it treated ASAP like you fortunately did.
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u/charlennon Apr 30 '24
Thank you for sharing your story. I have only recently become aware of the damage alcohol can do.
My dad is a Vietnam veteran. He came home in 1969 and spent a year going to the beach and getting drunk every day. My parents had kids in the 1980s, and my dad was 35 when I was born.
I didn’t see him much until I was grown because he worked all the time to stay busy and then drank until he passed out. It was the only way he could sleep. So he had about forty years of heavy drinking by the time he retired in 2012.
He is 78 now. He fell down the stairs a few years ago and had back and neck surgery. My husband and I were amazed that he didn’t seem to have any cognitive effects from the concussion and fall.
I read about brain damage and dementia that can result from heavy drinking about six months ago. I started wondering if my dad has had it for decades. He can’t handle money. He can’t use a thermostat. He can’t figure out how to turn the tv on and get the satellite dish working by making sure the Tv is on the right channel.
In some ways, he can pass as normal and people think he is great guy. In other ways, I feel like I have an adult child. Except he treats me like I’m stupid and thinks he should make all his own decisions and then let me bail him out when things go south.
Are there any resources where I can read about diagnosis and treatment decades after someone has likely had WE? I feel like I am not going to be believed because my dad is older now and people will attribute his issues to his age.
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u/Out-Foxing Sep 14 '24
This helps - I've never had alcohol but I had an ED for a few months earlier this year. I'm worried. But I don't know if I'm being silly.
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u/NewSea8771 Dec 02 '23
Wow I am currently 24 diagnosed with WE , I am not a heavy drinker just went through a botched gastric sleeve