Symptoms
2019-01-28 – Recent updates are noted with yellow.
Migraines
History
Since Dec 2000 I have suffered from migraine headaches to one degree or another. For a while I was getting multiple migraines per day and had no good medication to treat them. My description of a typical migraine is this: imagine someone grabbing your eyeballs and slowly pulling them out of your head for minutes or hours at a time.
In 2001 I had many, many migraines, including several at work. I occasionally needed a coworker to drive me home because I could not function.
Just before Thanksgiving 2005 I had sinus surgery to correct a deviated septum, and the doctor also “scraped” my sinuses, meaning he cleaned and widened them. The doctors thought my sinus issues could be contributing to migraines.
In Mar 2010 I had a spinal cord stimulator (SCS) surgically implanted in the back of my neck to reduce migraine pain levels. You can think of it like a pacemaker, except it sends out electrical “noise” to the nerves in my head, turning pain signals into static.
Unfortunately, my SCS failed in summer 2010. I got a replacement in Aug 2010, but the second unit never worked as well as the first one did, possibly because of the interference of scar tissue from the first implant surgery. Around the time of my second SCS surgery in Aug 2010 I experienced severe vertigo and was too dizzy to walk without help for several weeks.
In early 2018 injection treatment plus preventive meds have my migraines at a manageable level. The few times they pop up, I have “abortive” meds that can suppress them. Happily, this became my “new normal.”
In February 2018 the signals from my implants became weaker and less effective until they shut down completely. Afterwards the number of migraines increased for a time.
2019-01-28 – Nothing has been able to coax my implants back to life in a repeatable way. Fortunately, I have other effective treatments for my migraines, but it’s still a major disappointment that this one has seemingly permanently failed.
FMLA Medical Leave
While I was working at my last job I had to take several unpaid leaves of absence to deal with migraines.
| Reason | Start Date | End Date |
|---|---|---|
| Recovery from surgery | Aug 9, 2010 | Sep 20, 2010 |
| Migraines | Feb 3, 2011 | Feb 22, 2011 |
| Migraines | May 25, 2011 | Jun 8, 2011 |
| Migraines | Jan 14, 2013 | Jan 23, 2013 |
| Migraines | Apr 4, 2014 | Apr 30, 2014 |
| Migraines | Nov 17, 2014 | Dec 8, 2014 |
| Migraines | Feb 9, 2015 | Mar 9, 2015 |
| Migraines | Jun 19, 2015 | Jul 10, 2015 |
Sleep Issues
Obstructive Sleep Apnea Syndrome
This is the “garden variety” sleep disorder associated with heavy snoring during the night and low energy during the day.
History
In June 2008 “lack of sleep” was identified as a probable trigger for my migraines. Since then I have slept with a CPAP machine, which basically provides a constant air pressure in my respiratory system and helps prevent snoring and other blockages. I also sleep in a semi-upright position, which also helps prevent snoring.
On December 29, 2015 I had a sleep study at the Georgetown Sleep Center that revealed that I have both narcolepsy (excessive sleepiness) and insomnia (sleeplessness), which is hilarious.
I have spent years struggling to maintain a normal sleep schedule, but it’s difficult. This remains a recurring problem.
Resources
Sleep Thrashing and Yelling
Around 2016 I sometimes woke up finishing a sentence that I started in a dream. I also started noticing that objects near my bed were knocked over during the night. Eventually family members – Leslie, Julianne, and Stephen – witnessed me moving around and talking loudly in my sleep.
In late 2017 and early 2018 I began falling out of bed. We solved the problem by adding rails to my bed.
Nightmares
I think I’ve always had more nightmares than most people. For several months in 2017 I noticed that I was experiencing only good dreams, which was kinda nice. Unfortunately, that trend has reversed back, and I’m now having more nightmares.
2019-01-28 – Over the past few months I have been having more nightmares. We are exploring treatments.
Visual, Auditory, and Tactile Disturbances
The word “disturbances” is doctor code for “hallucinations.” So yes, I do have hallucinations, but I know they aren’t real, so they aren’t as concerning as some of my other issues.
“Shadow Birds”
These are migraine auras that resemble the shadow of a flying bird. The shadow birds are not very frequent at all, maybe a few times a week. And they are enough like “real things” that they are pretty easy to ignore without being weirded out.
“Wibbly-Wobbly Lines”
I called this “Dali World” when it first started. I see straight edges of objects become wibbly-wobbly like Jell-O pretty much all the time. It doesn’t happen to complex objects like a person or a car. It’s much less apparent if the object is in motion. It doesn’t affect text, so I can read and type just fine.
Water Drips
I sometimes feel something like water dripping onto my skin, but there is no actual water.
Auditory Disturbances
A few times a week I hear sounds I can’t account for, like something moving around in my room or what sounds like a faint radio station. I’ve heard these sounds for years, but only when it’s quiet, like at night when people are asleep. My theory is that I’m hearing something physically near my eardrum(s), like a blood vessel doing its thing, and my brain is trying to translate that sound into something sensible. At least one doctor has told me that’s a good theory.
Memory Issues
In 2012 I started having minor memory problems. I would temporarily forget, for example, co-workers names, the PIN on my bank card, and my home phone number, which at the time hadn’t changed in years.
In 2016 both my long- and short-term memory got much worse. Working on the computer, I often switch from one app to another and then can’t remember what I was doing or why I switched. Twice I’ve momentarily forgotten what house I’m in. The good news is that some of my meds cause memory issues, and so my hope is that one day I’ll no longer need those meds, and my memory issues will go away. Realistically, though, I always assume I’m going to forget things, and so I try to document important people, places, and events in my life as much as is reasonable.
Episodic Memory Loss
I’ve called this “Lost Time.” This is when I lose a recent memory, thinking back to an event that happened in the past few days and realizing I can’t remember some or all of it. It’s very different than Alzheimer’s-type memory loss, so I don’t seem to have Alzheimer’s.
Unstuck in Time
I often don’t know what day or time it is, even after recently looking at a calendar or a clock. It’s like my internal clock is broken. I set lots of reminders and alarms for myself.
Memory v Dream v Netflix
2019-01-28 – In the latter part of 2018 I noticed it was sometimes becoming harder for me to distinguish between a memory, a dream experience, or the plot of a TV show. Specifically, situations where I remember someone discussing a new idea are particularly prone to “false origin syndrome.” In these cases I can remember a new idea, but I can’t remember where the idea came from, and as I review the possible places, I realize I’m recalling TV shows and movies alongside nightmares and actual conversations.
Tremors
In 2011 I started getting tremors in my neck and shoulders. They can last anywhere from a few seconds to an hour or more. The longer they persist, the more noticeable they are. The triggers are the same as for migraines: stress, lack of sleep, extreme cold or heat, etc. If I lie down, they generally fade. On May 26, 2011 I documented my tremors in a short video. The video is a little disturbing, so be prepared if you watch it.
Pain
In 2014 I began regularly experiencing chronic fatigue, a severe loss of stamina, near-permanent pain in my left knee, and random body pains that come and go with no purpose. Since that time I’ve used a cane when I’m walking somewhere, and we keep a wheelchair in our vehicle in case I run out of energy completely. I never go anywhere alone in case I need someone to help me. That someone is usually Leslie, but sometimes Jay fills that role too.
I am registered as a handicapped driver in the state of Texas. It is technically legal for me to drive, but I never do. I would only drive if there was an emergency.
In Dec 2014 I damaged my right ulnar (elbow) nerve. I had untreatable pain in my hand and arm for several weeks. I had a “needles and electricity” test done to measure the extent of the damage, and the tech said, “These are very abnormal results.” When the surgeon saw the results, he said, “As far as this test goes, you can’t get any worse than this.” The surgeon warned us there was a danger of permanent damage if it’s not fixed quickly, and it might already be too late. He scheduled a surgery for the day after Christmas, Dec 26. The surgery was a success in eliminating the pain, but I permanently lost feeling in part of my right hand.
Random Pain
I get stabbing pains in random parts of my body for a few seconds up to a few minutes. They are usually located in my limbs: hands, fingers, ankles, etc.
Knee Pain
My left knee hurts when I put weight on it. This plus the dizziness makes it a challenge to get around, so I usually have a cane, walker, or wheelchair.
2019-01-28 – In the early part of 2019 I began getting stabbing pain in my left knee without any warning. The pain was present for less than a minute, but it was sharp and quick.
Gastroesophageal Reflux Disease (GERD)
This is “acid reflux” or heartburn. Mine is a light case compared to other people I know. Changing diet, better sleep habits, and meds have almost eliminated this for me.
Resources
Energy
Weakness & Dizziness
I am frequently “light-headed” and lacking in strength or stamina. It’s one of those “the spirit is willing but the flesh is weak” situations. Sometimes if I run out of steam my brain slows down too, and I end up talking like the DVM sloth in Zootopia.
Blips
Basically, a “blip” is a quick interruption of the normal functioning of my brain. To me, it feels like my brain turns off for a second and then turns right back on. Most of the time it happens so fast that no one around me would even notice it. I’ve had it happen while I’m walking, and I don’t slow down or stumble. It’s really weird. It also feels like that “woah” sensation when an elevator stops more quickly than you expect, except I feel it in my head instead of my tummy. Some people have suggested these are micro-seizures. I sometimes get two or three an hour, and other times I go weeks without one.
Generally speaking, I think I have a pretty good attitude about my health issues, but these blips are scary.