Ernie will be coming home tomorrow, Wednesday. Then I will be living with a man who can have another brain attack at any time. I wasn’t afraid of them before June 27th. Now I know how bad it can be.
Ernie’s first brain attack occurred in December 2006. He became unable to speak anything but gibberish with an occasional word thrown in. He was taken to the Emergency Room and from there he was admitted to the hospital. All the neurological tests and scans were done. After 18 hours, his speech returned. The neurologist said he thought Ernie may have had a TIA, but he wasn’t sure. It wasn’t typical. He prescribed Aggrenox to prevent stroke.
Again in 2008 he had an attack disturbing enough to warrant another ER trip, but this time his speech and functioning returned after about six hours and we came home. The neurologist we saw after that event said he didn’t think there had been a TIA. He thought it was a narrowing of the blood vessels to the area of the brain that controls vision and speech, and that it was simply due to aging.
We resolved not to return to the ER, which is an awful experience, but to simply wait out these attacks at home. They occurred months apart, not frequently. Each one leaving him a little less functional.
On April 28th, Ernie had another attack and this time he fell and cut his head so badly that we had to go to the ER for suturing and to be checked for possible head injury, but I refused to have him admitted to the hospital for observation and we came home after about six hours there.
When we went to the Medical Center to have the sutures removed, the available physician strongly advised us to see a neurologist. Having no belief that another neurologist, with yet another opinion, would do any good, Ernie had already made up his mind that he was not going to undergo all the arduous testing again. We just waited for his next scheduled appointment with his own doctor to discuss it with him. He convinced Ernie that the neurologist the other doctors had recommended was worth seeing, so we went. Following the brain attack that resulted in the fall, Ernie could no longer walk outside our apartment. I had to take him to appointments by wheelchair. The trip by wheelchair shuttle to the neurologist’s office was extremely painful for him.
The first thing I told the neurologist was that we were not interested in prolonging Ernie’s life and that we did not want any unnecessary medical procedures. He responded appropriately, using the test results he could get online from the hospital. Very positively and convincingly, he said that what Ernie had been having were seizures, not vascular problems. He prescribed anti-seizure medication which Ernie took for three weeks with no problems.
On June 14th, he had a fairly mild brain attack that passed by dinner time, with him just resting at home. However, he had been completely mute and unable to get my attention for the first few hours, though I was in the next room the whole time. This scared me. I called the neurologist who told me to increase the dosage of Keppra, which we did. On June 16th, Ernie had an all-day attack, starting at 4:40 a.m. when he fell trying to get to the bathroom. Until midafternoon I had to physically restrain him from getting up because of the risk of falling. Again I called the neurologist. He said, “Reduce the dosage. I really don’t know what’s going on.”
Two days later, Ernie had another attack. Without calling the doctor, I stopped the Keppra. He had another attack the next day—four brain attacks in one week. Did Keppra cause them? No way of knowing, but this anti-seizure medication certainly didn’t prevent these attacks.
A week passed with no attacks, then he had one on Saturday, that lasted only a few hours. The next day, June 27th, came the main event.
We call these episodes “brain attacks” because there has been no definitive diagnosis. What the doctors agree on is that they do not know what is going on. No diagnosis. No treatment.
Since the first fall, with the head injury, I have been aware of the risk of falling, and so was Ernie. He was being very risk-averse. Then the series of attacks starting June 14th increased my anxiety. Nevertheless, I have continued to go away from home, leaving him alone in the apartment.
But what about now? I have seen him out of his mind and out of control. Now that I’ve seen the worst attack and its aftermath and I know that it can happen again, how am I supposed to live? I wrote that this post would be “all about me.” Well, it’s not exactly. It’s about what I’ve been dealing with.
I’ll just say that for a couple of months I have had an intensely itchy rash that has not responded to two courses of steroid treatment or to antihistamine treatment. Three doctors have said they’ve never seen anything like it.
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