On Tuesday, January 29, 2019, I woke up with my right hand numb and part of the right side of my face numb. I have had six strokes starting in June 2011 through October 2012. They were determined to be migrainous strokes as they started with my atypical migraines and I was found to have a very unusual configuration of small arteries, along with some missing ones that normally would supply the right side of my brain. All of the strokes and most of the TIAs occurred in my right parietal and temporal lobes. The doctors at Hospital of the University of Pennsylvania (HUP) concluded this was due to the tiny arteries that fed these lobes, without any cross artery to the left side, would catch tiny clots that were thrown loose by the disturbance of the migraine. Prior to 2019, I had experienced 43 Transient Ischemic Attacks (TIAs or “mini-strokes”). This is my count. The MRIs don’t show individual TIAs well, but they do show damage done by multiple TIAs in the same spot or spots. I have atypical migraines. This means that many times they present with unusual aura and symptoms. Typical aura for migraine is partial loss of vision, or visual disturbance, on one side for about a half hour followed by intense pain on the opposite side of the head. These can be accompanied by hyper-sensitivity to light or sound, nausea and mood changes often including a desire to be alone.
Many migraineurs also notice a prodrome, which can last for as long as 48 hours before the aura presents. This is that uneasiness that something is not right like a premonition of something bad about to happen. Some do not notice their own prodrome, but their friends and relations notice it about them. They behave differently; more subdued or more irritable or more agitated than usual. Once the headache (which can last for as little as a half hour to several days) passes, it is usually followed by the postdrome or “migraine hangover“. Like the nickname implies, it can include fatigue, uneasy stomach, feeling totally washed out. It can last for a couple of days.
What makes a migraine atypical is everything from a variety of very strange aura to additional debilitating symptoms during the headache itself, including impaired vision, vomiting, diarrhrea, sinus pressure, body pain, balance issues and eye or tooth pain. I have had migraines that lasted for up to two weeks at a time. I follow an intense protocol to prevent migraines, since mine cause strokes and TIAs. Many migraineurs are triggered by specific things. A lot of people have the mistaken idea that some of these triggers are universal to all migraineurs. For example, sulfites in red wine is a fairly common trigger, but not everyone is affected by them. Also, a person’s triggers can change several times throughout their life. People can have migraines during various times in their lives, with long migraine free periods between. A possible ray of sunshine is that those who experience classic migraine live longer on average than those who don’t. Of course, it may be like the runner’s dilemma. A study showed that the average added life expectancy for a runner is roughly equal to the cumulative hours in their life they spent running. The lesson there is: don’t run unless you enjoy it.
Now back to my story. I have had “Gumby vision” and “Picasso vision” as aura to horrific migraines. The summer of 2011 I had only eight days without debilitating migraines. I had three hospital stays and one ambulance transfer to Philadelphia (HUP). Some of the migraines lasted almost two weeks. It was during this time I had my first several TIAs. They were recognizable to me and my family as they caused temporary deficits that outlasted the pain, that were the same as if I had had an ischemic stroke: weakness on one side of my body, word salad, uneven smile, etc. Dr. Scott Kasner, one of the top stroke specialists on the east coast, prescribed the Jefferson University Hospital Headache Center’s regime to help prevent migraines. It is a combination of herbal supplements and drugs. We have tweaked it a number of times to individualize it for my peculiar drug allergies and tolerances. It has given me many migraine free weeks and even months. Even so, I have experienced a total of 45 TIAs and three more small strokes, for a total of six.
I woke up with the 44th TIA occurring on January 29, as I stated above. I sat this one out at home. It took two days for the symptoms to pass. I figured we know what is causing them. They don’t leave any permanent damage; I can handle this. This turns out to be only partly true. A TIA can leave permanent damage. It can also turn into a full blown stroke if not treated correctly.
On Sunday, February 3, 2019, I woke up before 6 A.M. with the same symptoms. This time they were more intense. Then I took my blood sugar before breakfast. It was 515! I don’t recall ever having a reading that high before. I waited for Bethann to leave for church, then I called my good friend, Mike Visser, to take me to the ER. I feared that the numbness was due to diabetic neuropathy. This time, they got me right into the ER, took several tubes of blood, installed an IV line, just in case, took me for a CT scan of my brain and moved me up to a private room on the telemetry floor within an hour. I had to stay almost completely horizontal for the first 24 hours. This is to help heal the brain. The idea is that it is easier for the heart to pump more oxygenated blood to the brain if it doesn’t have to overcome an extra vertical foot or so.
Grand View kept me for three days. We were busy. They took an echo of my carotids. They took another CT with and without contrast of my neck. They took an MRI of my brain. Finally, on Tuesday morning, Dr. Olivero and his team performed an angiogram to look at the blood vessels in my lungs, my neck and parts of my brain. They found my right carotid is 80 to 90 percent blocked. Surgery has been scheduled for March 6. What is interesting about this is that this condition is not related to the TIAs I experienced. The blockage is on the opposite side from where these TIAs occurred. This means this was a serendipitous discovery, much like the last time I went to the hospital for stroke type symptoms and they discovered that my aortic valve had been damaged by the infection on my spine from two and a half years prior. It is also significant that they occurred on the opposite hemisphere of my brain from the overwhelming majority of my prior TIAs and all of my strokes.
Six or eight doctors visited me during those three days. Every one except one used the word “interesting” to describe my case, when they were talking to me. I told Dr. Hurlbut, one of three neurologists I saw, that that is one word that patients do not want to hear from their doctors. I would just like to be normal for once. He sympathized, then assured me I was anything but normal.