Amyloid Spells

 Amyloid Spells: What are they?

This is a term that I only recently became familiar with. If you do an online search you will probably come up with something like this 

Amyloid spells, also known as transient focal neurological episodes (TFNEs), are brief recurrent neurological episodes that can occur in people with CAA. They can mimic seizures or transient ischemic attacks (TIAs) and are often misdiagnosed. Amyloid spells are caused by the deposition of amyloid-beta protein in the walls of blood vessels in the brain, leading to vessel fragility and potential neurological events. 

So .... this explains a lot. My husband's new neurologist explained these at his last appointment. When asked about what signs and symptoms he had experienced since the last appointment we discussed:

• Days when his memory appeared to be worse than usual
• Difficulty writing and/or reading
• Sensory changes in his face and arms
• Additional confusion when confronted with tasks
• Reporting that he felt a bit "strange in the head"
• Increased fatigue
• Increased expressive and receptive dysphasia (ie difficulty with word finding and difficulty understanding speech)

These are examples of Amyloid Spells. 

On these days I am always hyper vigilant as to whether or not this is another major Inter Cerebral Hemorrhage (ICH) that is brewing. Most of the time, these additional symptoms (on top of his typical presentation) are transient and they do recede after a few minutes, hours or the next day. With CAA such amyloid spells can occur anywhere in the brain so could be any type of neurological symptom. The ones that I have listed are those that I notice the most at the moment.

The trick is learning to understand this and being able to sit with these symptoms and not rush off to seek immediate medical advice. It's a fine line and goes against immediately seeking medical attention. Caring for someone with CAA requires walking a tight rope and being able to sit and observe and wait sometimes.  It's not an easy thing to do.

Much harder for my husband who is one of the most courageous people I know. One day he went to bed after experiencing an amyloid spell and gave me instructions as to what to do if he died during the night. An expression of deep courage and vulnerability.