Patient Comments: Encephalopathy - Type of Encephalopathy

Question:

From what type of encephalopathy did you suffer? Submit Your Comment

Comment from: Bud, 75 or over Female (Caregiver) Published: August 23

In July 2015 my wife had her gall bladder removed. During the operation she tried to tell them she could not breathe, but was not able to get the message to them. She then heard a person state, 'what do we do now?' She was sedated more and the next thing she remembered was coming out from the initial recovery room to where I was waiting which was a few hours after the operation. She was hooked up to oxygen, coughing, gagging, had a pain in her back and could not inhale properly. They brought out a spirometer in which she could not raise the ball to the top. There is more that will be dealt with but she was sent to the hospital from the clinic and released the next day. Upon my bringing her home she was not able to open or use her computer, and many other problems and symptoms of encephalopathy that we thought were just temporary, but were not.

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: 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.

Comment from: sissy41465, 3-6 Female (Caregiver) Published: May 21

My grandson was recently diagnosed with autism, and encephalopathy was in his patient file.

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.

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Comment from: IndPhil, 55-64 Male (Patient) Published: July 20

I had open heart surgery almost a year ago to repair a defective mitral valve and a bypass surgery. During the surgery, the surgeon restarted my heart to observe the repaired valve, and he was not happy with the results, so he put me back on the heart-lung-bypass machine to correct the valve functionality. Following the surgery, it took four days for me to regain consciousness. When I did awake, I had no idea where I was or why I was there. Gradually, with help of my family, I regained at least part of my memory. I was told I had been non-responsive for four days following the open heart surgery. It has now been 11 months, and I am still trying to put all the pieces together. I tried to go back to work about 90 days post-surgery but have not been able to hold a job down. There are times without warning when my mind will go blank and my wife will say, "Where were you, or where did you go?” This has been freaking me out. I now understand that following my open heart surgery I developed "encephalopathy." I am still trying to get my arms around this and am so very confused. There are times I want to cry without warning. I just applied for disability as I turned 62 yesterday.

Comment from: cookie, 65-74 Female (Patient) Published: October 08

At age 69 I became ill with a fever of 101-102 and flu-like symptoms. The fever went away and 2 days later I was dizzy started vomiting. My family called an ambulance. I remember the ambulance ride but nothing else for the month of July. I was in the ICU 2 weeks and a step down unit another 12 days. I went to an inpatient rehab to learn to walk again, then on to an occupational physical therapist. The physical therapist diagnosed meningitis with encephalophy. The medical team thinks I contacted the infection from mosquito. I live on the Bay in Gulf Shores AL. I am a retired nurse. It's the scariest thing I have ever been through. I still have periods of dizziness and ataxia. I'm lucky to be alive. I have started CoQ10 and probiotics on my own.

Comment from: Jodi, 45-54 Female (Patient) Published: July 06

After reading al your information although I am grateful am not alone am so very sad that you share my misfortune. Mine began at 44 after chemical exposure neurotoxins at work and continued as nobody took the stand they promised. I have suffered so much memory loss, cognitive defects, hearing loss, brain atrophy, migraines, sleep issues, and weight loss.

Comment from: 55-64 Female (Patient) Published: October 06

I have Hashimoto's encephalopathy. It is treated with steroids, specifically prednisone or, in my case, Medrol. ( Few encephalopathies are treatable.) It is one of the lesser-known encephalopathies. It is related to Hashimoto's thyroiditis in that the thyroid antibodies attack the neurons of the brain. I thought I was developing dementia. The main symptom at first is short-term memory loss. There can be stroke-like symptoms, tremors, confusion, walking problems, and seizures to name a few. I could have ended up in a nursing home...and maybe some people without more knowledgeable doctors have. Thankfully, I was diagnosed early and treated by a good doctor. I was able to return to work.

Comment from: sharon2065, 55-64 Female (Caregiver) Published: October 06

My sister is 65 years old and is hospitalized in an ICU unit in Houston with the diagnosis of encephalopathy. She went from normal activity to confusion to coma in a relatively short time. She is completely unresponsive. The doctors have run all the tests and so far are unable to find the reason for the encephalopathy. Her prognosis is very poor because it is thought that she has had an MI and CVA; she is positive for pneumonia. This is a very confusing disease process.

Comment from: concerned mommy, 3-6 Male (Caregiver) Published: March 06

My son is 5 years old, he has just been told he has encephalopathy, but it says unspecified. We wonder what type it is. He has mood swings, very irritable at times, high anxiety, nervous, tremors, sensory integration disorder, separation anxiety disorder, speech problems, and learning disabilities.

Comment from: adamsj74, 35-44 Male (Patient) Published: February 13

I am 37 who suffers with hepatic encephalopathy every day and I to get frustrated with myself sometimes so much to say I wish I could check out but we got to raise awareness and get support groups through Facebook and twitter build from each other strength just a few suggestions I had.

Comment from: rpg.inc, 65-74 Male (Caregiver) Published: March 29

My father has been diagnosed with hepatic encephalopathy, peripheral neuropathy, and osteoarthritis on his knees. He's only 67 and it is believed to be his alcoholism that caused this condition. The doctor has started him on hospice but I have hope he can get better. He is cognizant and speaks, although repeats his phrases quite a bit. Is there any therapy out there that can help? He eats well but it is getting more difficult to move around and he's lost bowel control. Need better advice than hospice. Can anyone help?

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Comment from: Pixxsie, 25-34 Female (Patient) Published: December 06

I am suffering from hepatic encephalopathy. Chronic alcoholism. Liver very swollen, veins protruding to surface in abdominal area. I'm very scared. I go to Alcoholics Anonymous. I have tried so hard to stop drinking. Today I'm very scared. I'm confused, - I've done an IQ test - about 2 years ago, and had nothing to worry about. Now...I'm scared, confused, my livers failing and I'm at work right now with a very swollen face, abdomen (and I'm a tiny girl) - the tears are welling up, I feel that I'm dying. I've been hospitalized a few times for pancreatitis and hepatitis. I try to stay positive, but the toxins in my blood due to impaired liver function and cirrhosis are leading me to mental confusion. I'm embarrassed at work and I am losing all dignity. Once a pretty girl with a good heart and now I'm ill, afraid, humiliated and feel like a waste of space. God please grant me the capacity to not give up because right now I want to give up.

Comment from: Anjali, 0-2 Female (Caregiver) Published: August 23

A baby girl age 2 years having the problem Hypoxic encephalopathy according to local doctor said. We have done MRI of her brain. She can't catch the thing by using hands and she can't move on her feet. She can't talk with others. Saliva released every time from her mouth. She always cries and can't sit without others help.

Comment from: Angel on Earth, 25-34 Female (Patient) Published: January 28

I have been diagnosed with Encephalopathy Hashimoto. I have been taking steroids and Cortizone. My situation is a bit better but I can still feel I am not 100% my self yet. It was a very terrifying experience for me and I hope nobody will have to go through what I have been through. I was in a coma state for 4 months. I have lost my memory completely. I didn't know where I was, who I was, how old I was, could not recognize members of my family. It's been a year now that I have the problem and I can hardly remember this last one year.

Comment from: 65-74 Female (Patient) Published: December 03

I have hepatic encephalopathy. I was diagnosed just 3 months ago and I agree, it's the scariest disease I've ever dealt with!! Out of the clear blue, I'll get weak in my knees and leg muscles and I know I'm going to "faint"/or have a small seizure. I don't actually lose conscious, I'm aware of my surroundings, but it can happen anytime, anywhere. Fortunately, so far, I can sense them coming and can, for the most part, stay at home. But I've had problems driving; I get so sleepy my eyes won't stay open; I'm really scared I'll hurt someone. The medicine, Lactulose, makes me so self-conscious; I'm almost home-bound. The gas and diarrhea are miserable. When first diagnosed, my doctors didn't believe me when I told them I wasn't an alcoholic!! I do have liver disease, so a biopsy is planned. I was in medicine for 25 years & I had never heard of this horrible disease. I try to do keep writing or playing games on my computer to try & keep my mind as straight as I can. No one has told me yet, but I'm waiting for the "bad" news after this next round of tests. Thanks for reading this-I just had to vent somewhere.

Comment from: Frantic, 55-64 Female (Patient) Published: November 09

I was recently diagnosed with Encephalopathy. My Neurologist believes it is from medications. He said he doesn't prescribe Nortriptyline to patients over 50. He didn't seem sure that that was the medication that caused it. I switched medications and am concerned that I should go off all medications. Has anyone else out there gotten Encephalopathy from medications? I'd be interested in talking to you-anonymously, of course. Thank you.

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