Thursday, January 30, 2014

Mrs. Lincoln and my seizure

On Monday, January 20, 2014, I had a seizure and I spent the night at Saint Alphonsus in Boise.

My strokes happened two years ago, and I had no idea that a seizure would be a possibility afterwards.  It would have been great to have forewarning because this was a shock emotionally and physically.

Seizures are bouts of disorganized electrical activity in the brain. They can happen spontaneously (primary seizures) or from brain damage (due to stroke).

Seizures come in different flavors. Last week, I lost consciousness. In May, I had an "incident" that resembled a seizure. I never lost consciousness, and I described my symptoms in detail. I had an aura on my right side, and it seemed that my right side vision was disrupted. It almost seemed that my right vision was a memory like a two second delay.  Even though I described that vividly, the doctors did not seem to know what happened.

Instead, they prescribed anti-seizure medication, Keppra, even though they said it was not a seizure.  The side effects were horrible. They included

"Throat Irritation, Drowsiness, Dizzy, Head Pain, Feeling Weak, Feeling Restless, Depression, Mood Changes, Anxious, Sensation of Spinning or Whirling, Low Energy, Pain, Loss of Appetite, and Easily Angered or Annoyed."

So, other than that, Mrs. Lincoln, did you enjoy the play?

I talked to my regular doctor last summer after the "incident," and I told him that the side effects of Keppra were disabling. He said, "You did not have another stroke or a seizure. It is crazy to take that drug when you do not need to."

Later that summer, my neurologists seemed to agree and I quit taking the drug.

But last Monday it all changed. I had the symptoms in May and last week: I had an aura which is a
perceptual disturbance experienced by some seizures before either the headache or seizure begins. It often manifests as the perception of a strange light and or confusing thoughts or experiences.  

Last week, my doctors told me that an aura is common when you have a seizure. It would have been helpful for me to know that last May when I described those symptoms.

Last week, I started to take Keppra and the side effects started to happen again. I have been miserable. Certainly, I need to take a pill to stop seizures, but what is the cost of my quality of life? Not just my life…my families’ life also.

Two days ago, we saw my neurologist again. There are other alterative medications I can try. And I will. All drugs have side effects, and I need to balance the medications to make sure they are effective but also do not make me a crazed zombie. When we were leaving her office, her partner seemed surprised that we will try a different drug. 

What I have realized, doctors are educated guessers. Until you have a stroke or a seizure, you have no idea what a person goes through. You are scared. You are confused.  You are mad. You are sad.

Every day you worry that it will happen again and be worse.

Every day. 

It would be easy to give up I suppose. But, I cannot live my life in fear. I am simply pissed off about my bodies limitations. 

Strokes: The gift that keeps giving. 

Sunday, January 19, 2014

What is enough?

When my strokes happened, I had rehab at the hospital. My schedule was intense for me. Two times a day, I had occupational therapy, physical therapy, and speech therapy.

It was incredibly hard. I had to skip and do yoga on a Wii. I could not to it very well. I had speech therapy. Over and over, my patient therapist would ask me to say word with pictures. “Mark, what is a “comb?” What is an “A?” Etc.

I got out of the  hospital on Friday, January 27, 2012. On Monday, January 30th at 9:00 a.m., I started at “STARS,” St. Alphonsus Rehabilitation Services.   For about 10 months, I had therapy. I had mainly occupational therapy and speech therapy.

They had me doing all sorts of things. “PowerPoint, Excel, and Word:” That was my livelihood “before.” I had to complete “Hart Charts” and “Dynavision” for vision loss. I was a math whiz before the strokes. Now, even now, I cannot “do” math. I read financial, but I cannot express them.

In the beginning, it was 6 times a week plus “homework” on our computer. During the summer and fall, I concentrated on trying to drive again. In the hospital, one therapy told me “sorry, you will not drive again.”
In October, 2012, I drove.

After that hurdle, STARS basically told me that I was doing so well that they had nothing further that they could offer me in terms of treatment and therapy. A great STARS therapist told me “now, just live and practice on your own.”    

So I did.

But, I wanted to challenge myself in every way.  I went to stroke support groups just to be involved and to determine if there are other forms of therapy rather than STARS. In May, 2013 at the St. Alphonsus Stroke Support Group, we had a presentation about “vision and stroke.”

I got an appointment at “Focus Vision Therapy Center.” Dr. Scott Lewis and his staff gave me so much hope.

For four months (so far!), I have had therapy session two times a week. They have me do intense computer work. It is also very hard in so many ways. But, I want to challenge myself in every way possible. And they do that for me. 

They do not give up. They say thinks like “We will try this one or that one.”
I had a progress report with Dr. Lewis last week. I know that we are both happy that I am making great strides.

It has been two years since my strokes happened. I will never give up hope. I will continue to use every means possible like alterative medicine like acupuncture, vision therapy, etc.

I am grateful that doctors like Dr. Scott Lewis exhaust every opportunity to help me recover.

So, what is enough therapy? There will never be enough.

Monday, January 13, 2014

Second anniversary of my massive stroke is today, January 13.

Today marks the anniversary of my second Ischemic stroke which was a massive one. It was caused by torn carotid artery. Here is a definition: “Carotid artery dissection is a separation of the layers of the artery wall supplying oxygen-bearing blood to the head and brain, and is the most common cause of stroke in young adults.”

Further research tells more of my stroke story:
“Once considered uncommon, spontaneous carotid artery dissection is an increasingly recognized cause of stroke that preferentially affects the middle-aged. Arterial dissection of the carotid arteries occurs when a small tear forms in the innermost lining of the arterial wall (known as the tunica intima). Blood is then able to enter the space between the inner and outer layers of the vessel, causing narrowing (stenosis) or complete occlusion. The stenosis that occurs in the early stages of arterial dissection is a dynamic process and some occlusions can return to stenosis very quickly. When complete occlusion occurs, it may lead to ischaemia. Often, even a complete occlusion is totally asymptomatic because bilateral circulation keeps the brain well perfused. However, when blood clots form and break off from the site of the tear, they form emboli, which can travel through the arteries to the brain and block the blood supply to the brain, resulting in an ischaemic stroke, otherwise known as a cerebral infarction. Blood clots, or emboli, originating from the dissection are thought to be the cause of infarction in the majority of cases of stroke in the presence of carotid artery dissection. Cerebral infarction causes irreversible damage to the brain. In one study of patients with carotid artery dissection, 60% had infarcts documented on neuroimaging.

It still does not seem possible that it happened to me. 

Friday, January 3, 2014

Ischemic strokes and Fibromuscular Dysplasia

Almost two years ago, I had two Ischemic strokes. Ischemic strokes accounts for about 87 percent of all cases. Ischemic strokes occur as a result of an obstruction within a blood vessel supplying blood to the brain. 

My initial stroke was caused by a torn carotid artery. 

The American Heart and Stroke Association have a good definition:  “Cerebral embolism refers generally to a blood clot that forms at another location in the circulatory system, usually the heart and large arteries of the upper chest and neck. A portion of the blood clot breaks loose, enters the bloodstream and travels through the brain's blood vessels until it reaches vessels too small to let it pass. A second important cause of embolism is an irregular heartbeat, known as atrial fibrillation. It creates conditions where clots can form in the heart, dislodge and travel to the brain.”

According to U.S. Centers for Disease Control and Prevention, here are U.S. Statistics about strokes:
§  Stroke is the third leading cause of death in the United States. More than 140,000 people die each year from stroke in the United States.
§  Stroke is a leading cause of death in the United States — that’s 1 of every 19 deaths
§  Stroke is the leading cause of serious, long-term disability in the United States.
§  Each year, approximately 795,000 people suffer a stroke. About 600,000 of these are first attacks, and 185,000 are recurrent attacks.
§  Nearly three-quarters of all strokes occur in people over the age of 65. The risk of having a stroke more than doubles each decade after the age of 55.
§  Strokes can and do occur at ANY age. Nearly one fourth of strokes occur in people under the age of 65.
§  Stroke death rates are higher for African-Americans than for whites, even at younger ages.
§  On average, someone in the United States has a stroke every 40 seconds.
§  The risk of ischemic stroke in current smokers is about double that of nonsmokers after adjustment for other risk factors.
§  Atrial fibrillation (AF) is an independent risk factor for stroke, increasing risk about five-fold.
§  High blood pressure is the most important risk factor for stroke.

I did not have high blood pressure. I never smoked. I have “Fibromuscular dysplasia (FMD) is the abnormal development or growth of cells in the walls of arteries that can cause the vessels to narrow or bulge. The carotid arteries, which pass through the neck and supply blood to the brain, are commonly affected. Arteries within the brain and kidneys can also be affected.”

My stroke happened on January 10, 2012. Three days later, I had a massive one that caused me to lose all communication and assorted other problems; aphasia, apraxia, etc.

This is my brain scan. Dead tissue is “white.” There is a small white spot showing the first stroke. The second stroke damaged about 20 percent of my brain.

There were doctors who did not give me a lot of hope. There is a stark line between hope and realism. Most doctors err on the side of realism. I understand given all of the data, studies, etc. I also know that medical malpractice lawsuits cause doctors to not give a lot of hope. “Hope” is my mantra now.  

I know that I may never work again because of my deficits, but I am incredibly lucky that I am alive and recovering. One doctor said that "I am a miracle." Hope so....