Two and a half years ago, in status epilepticus, unconscious for 3 weeks, my ammonia level was 1,494. The test was taken numerous times because no one could believe that I was still alive. I have this documented. I have no history of drug or alcohol abuse. Have you ever heard of anyone with an ammonia level this elevated who survived it without any lasting organ damage?
Well i must say that God was really watching over you.
It's a miracle that you have returned to normal state after having such a high level of ammonia. In India, we have never seen anyone alive after such a high level. I can just say that, the medical care you received was EXCELLENT!
After spending 2 years in a nursing home I now have my own place. In the process of starting my life over and I would love your opinion- I'm now experiencing debilitating head aches which are getting progressively worse and I'd like to know if the high amonia level could've changed the chemistry of my brain thus causing severe head aches and other side effects? Thank you, a response would be most appreciated.
Have you received a diagnosis? It sounds like you may have a urea cycle disorder, which involves a deficiency of one of six enzymes in the liver which transfer ammonia from the blood into a harmless substance. An untreated urea cycle disorder results in elevations of ammonia, which in turn causes changes in the brain, causing brain swelling, seizures, coma, and death. For someone who has recovered from the hyperammonemia, residua of damage affects cognitive function. Untreated, elevations of certain chemicals in the brain cause headaches, speech problems, and other problems with executive function. Please feel free to email me off the forum at the National Urea Cycle Disorders Foundation at CureUCD(dot)org. Our website is www(dot)nucdf(dot)org. Best regards, Cynthia Le Mons, Executive Director, National Urea Cycle Disorders Foundation.
I have had this debilating headache for two months it is gettig worse everyday. I have gone to my primary care he sent me to the ER, they did a CAT scan it came back negative. My neuro has ordered an MRI this week to rule out brain tumor. I do not sleep at night and I vomit everyday. I am still trying to be diagnosed Your feedback is very much appreciated and makes sense Thank you. Should I request another ammonia level?
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