Patient Comments: Encephalopathy - Type of Encephalopathy

Question:From what type of encephalopathy did you suffer?

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: 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.

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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