Patient Comments: Encephalopathy - Type of Encephalopathy

Question:From what type of encephalopathy did you suffer?

Comment from: Dontgiveup, 75 or over Male (Caregiver) Published: December 11

My father passed away from hepatic encephalopathy after years of chronic alcoholism. He couldn't stop drinking, but he fought the mental deterioration until his last week of life. He didn't live long after the diagnosis (at 81 years of age), but my family worked hard to try to keep him mentally and emotionally engaged. Crossword puzzles, Sudoku, and word find puzzles offered him some brain exercise that calmed him. As he tried to hold onto his thoughts and memories, exercising his brain helped greatly.

Comment from: Fred, 45-54 Female (Patient) Published: June 04

I have been diagnosed with migraine encephalopathy, a neurological mitochondrial in nature, brain disorder. Basically I do not respond to medication and my headaches are every day since the age of 12. The neurologist did many tests including EEG, spinal tap, skin biopsy, and CAT scan to get this diagnosed. I can only go 2 weeks and then I need an opiate to help me diminish the pain and then we start all over again. Physical activity makes the pain worse so daily limits are in place to keep the pain at a low level. My memory is affected when the pain is at a high level, seems to be getting worse with age instead of better.

Comment from: Trudy, 45-54 Female (Patient) Published: April 11

I"ve been diagnosed with Hashimoto"s encephalopathy 7 years ago and it seems to be caused by medicines. It is horrible. I have blackouts for hours and bad pressures in my brain. My hearing goes down, eyesight gets blurred and I have high fevers and I'm on a very high dose of thyroxine. I am on the steroids now because they didn"t work anymore.

Comment from: Sadiethelady56, 45-54 Female (Patient) Published: July 20

I have hepatic enchephalopathy. It's the scariest thing I've ever dealt with and equally as frustrating. I have always been a very strong person, and now I don't trust my decisions. I second guess my decisions, am scared to death of protein, and for a retired cop who's used to having it all under control, it makes me crazy. I find myself just withdrawing from everyone rather than do something stupid. I'm also tired a lot. My sleep schedule is bizarre after years of complete regularity. It's just frustrating and scary. I used to be able to recognize when it was elevated, but now I can't.

Comment from: Emeraldprince, 45-54 Male (Patient) Published: August 31

I was recently diagnosed with Encephalopathy. Wasn't given a specific type. Not alcohol related at all. I rarely if ever drink. Matter of fact drinking until I get a buzz makes my tremors worse. I have memory loss and at times have a hard time speaking when they are bad. I have what appears as seizures. I came from a western European country where I was living when this all started over a year ago. They thought it was all in my head. I am on medicine now but wasn't given much of a prognosis. I am still vague even on what is wrong with me. I will have to talk further with my Neurologist. I live with family and it is hard on him as he is elderly. I don't want to get on disability as I want to get my fiancé here to help me when I have my hard times. I am looking for work that I know I can do.

Comment from: Help, 65-74 Male (Patient) Published: May 19

I have been battling a severe pinworm infection for many months, with negative stool samples at least 7 samples. I have taken over-the-counter as well as prescription medicines. They are getting bigger and grosser, I'm cleansing laundry almost daily. I can't take this anymore. I even had a colonoscopy which was negative. All this started with my grandchildren. I'm so angry.

Comment from: Catyize003, 55-64 Female (Patient) Published: December 01

With all the concussion talk about the NFL, I am wondering if I should seek out an MRI or other test, as I had a severe concussion back in 1999, was down on medication for 14 days, and returned to work, too early in my opinion. Back then, they did not consider that six months later I had difficulty memorizing a scheme, which I ordinarily would have had no issues with. There are six months to a year of living in like a dream state, and I now wonder just how much damage was really done back then. Should I be concerned, I did have issues with personality changes, and wondering if there are things I should look out for in the future. I just want to be prepared, as work just wanted to get me back to work, they were not concerned about long term effects.

Patient Comments

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Encephalopathy - Symptoms Question: What were the symptoms of encephalopathy in you or someone you know?
Encephalopathy - Diagnosis Question: What types of tests and exams led to the diagnosis of encephalopathy in you, a friend, or relative?
Encephalopathy - Prognosis Question: What is the outlook for a patient you know who had encephalopathy?

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