I’ve blogged in the past about my ongoing problems with chronic pain, caused by a lovely combination of fibromyalgia and peripheral neuropathy.
Over the last couple of months, the pain has gradually been beaten down by medications and some stretching exercises I’ve been trying to keep doing on a semi-regular schedule. While I still have times when I feel pretty awful, my average condition has improved a lot, and I’ve been much more productive of late. Woohoo!
Then things took an interesting turn. On Wednesday (September 10th), I woke up around 7:30 AM, had breakfast, took my medications, did a couple of small chores, and generally did the usual things I do when I get up in the morning. I was still pretty sleepy, and noted that I didn’t have anything on my schedule until late in the morning, so I set an alarm for 9:40 AM and went back to bed for an hour or so.
At 9:40 AM, the alarm went off, and I thought to myself, “I’ll snooze one time then get up.” I reached out to snooze the alarm.
That is the last thing I remember for approximately 40 minutes. I only know what happened during that time because my wife told me. Here’s what she says happened, in paraphrase:
When the snooze buzzed, I shut it off, then sat up and swung around so I could put my feet on the floor. Then I sat there, slightly unsteadily, making odd moaning and groaning sounds. After a while, Sarah asked if I was okay. I responded by saying, “I need to go use the bathroom,” and I got up and tottered my way toward the bathroom.
Concerned by this point, Sarah made the wise decision to get up and follow me. I stood in the bathroom in front of the toilet, not doing anything, and she stood a couple of feet away in the doorway. Suddenly, my legs just gave out beneath me and I crumpled. As I collapsed, I grabbed for support and wound up ripping the toilet paper holder off the wall. The (brand new) roll of paper bounced into the toilet with a splash, and the pieces of the holder (one wall bracket and the spool rod) clattered onto the floor.
I landed on my backside on the shower mat behind me, and sat there, once again making moaning sounds.
After some amount of time that I’m not clear on, I calmly picked up the toilet paper holder’s little rod and dropped it into the toilet bowl.
This leads to the one memory I have from this episode: the image of a silver rod suspended in some sort of space. I thought it was air, but I suspect it was the toilet water.
At this point, Sarah tells me that if I don’t talk to her, she’s going to call for an ambulance. I don’t respond. So she calls 911 and asks for an ambulance. She does finally succeed in getting me to stand up and stumble back to the bedroom and flop onto the bed on my back.
And that’s where I was lying when my memory resumes. I suddenly discovered myself on the bed, on my back, looking up at a number of paramedics and a couple of people from the fire department. I had an IV in my arm and they were administering dextrose solution, because my blood sugar had tested so low that they could not read a result.
It seems that my blood glucose level had fallen so low that I had suffered a seizure. A blood glucose level below 70 is considered low. Mine was in at best the mid-20s.
I was taken to the local hospital by ambulance and admitted into the hospital, where I stayed for a day and a half. During that time, some tests were run and it was found that my body is, for some reason, producing excess insulin, which is causing me to burn through glucose too quickly, resulting in sugar levels lower than they should be, and at times dangerously low.
There are three possible causes for this condition, which is called Hyperinsulinemic hypoglycemia:
- Accidentally taking someone’s diabetes medication. This did not happen in my case. While my wife does take diabetes medication, it is stored entirely separately from mine. Also, the problem has continued to happen even in the absence of that medication (i.e., while I was in the hospital).
- Insulinoma. This is a usually benign tumor on the pancreas. This is apparently the same type of tumor Steve Jobs had, which he would have survived if he hadn’t refused to have the surgery to remove the tumor. These are usually cured outright by surgery, and have a 90% survival rate.
- Nesidioblastosis. It’s been discovered that a few years after Roux-en-Y gastric bypass surgery, a rare condition can develop in which some or all of the insulin producing cells in the pancreas to become enlarged and begin producing too much insulin in response to food. This can be cured by removing part of the pancreas.
So most likely, I either have a tumor which needs to be removed or I will need part of my pancreas removed. Otherwise I will keep having these sugar crashes and eventually one will happen at a time or place in which it endangers me.
In an hour or so, I will be visiting an endocrinologist to begin sorting out what exactly my condition is and to come up with a treatment protocol. I’m curious to know more, but definitely a little afraid, too.
I’m annoyed that just as I was starting to get some real, productive work done again, and work on really exciting new projects, something came along and said “no.”
Maybe I will be lucky and find that fixing this helps with some of my other, chronic, problems. It seems improbable but you never know for sure.
I won’t know for sure the full scope of the situation, or the breadth of its impact on my work schedule, until I’ve met with the endocrinologist (and probably also not until some tests are run). I figure there are more blood tests and possibly/probably an ultrasound or CAT scan ahead.
This sucks. But at least, so far, it looks likely to be something that can be treated and cured. More to come!
I've had my appointment with the endocrinologist and it turns out that, in his opinion, the internist at the hospital was "crazy" to suggest insulinoma. His tentative diagnosis is post-gastric bypass hyperinsulinic hypoglycemia. I'm now wearing -- for the next week -- a little sensor that's constantly checking my blood sugar and recording the numbers. This, and a food log, will be evaluated next week and we'll see what comes of it.
For now, we hope to control this by tightening up my dietary rules a bit rather than adding medications or performing surgery. The labs we drew for today, plus the sensor results, will help determine if that's going to be enough.
So for now, I can breathe somewhat easier. Whew!