Monday, November 10, 2014

Another hospital trip -- is it all related?

On Wednesday, Oct. 29, I woke up a little after 6:00 am and had to go to the bathroom.  I remember feeling a dizzy.  I had been sick for a few days, and I woke up thirsty.  I walked to the bathroom and stood, leaning against the wall.  I remember perhaps two minutes from the rest of that day.  I'm told that my wife walked past as I was standing, and as she said "good morning", I slumped halfway to the ground and then fell over, hitting my head on the tile.

The first thing I remember after leaning against the wall is lying down on the floor in the bathroom, unable to stand up and with incredible difficulty focusing my eyes.  I remember my wife asking something (don't remember what) and then hearing her say "I'm going to call an ambulance".  I remember saying "I don't need an ambulance, please don't call an ambulance".  My oldest daughter (who I kind of remember being in there too by this point) tells me that it came out, slurred, as "don't call abulence".

I remember trying to get up, being unable to, and then asking my wife to please get help (of course, she had already told me she was calling an ambulance, but I didn't remember that at the time).

After what seemed like about a minute (I'm guessing it was longer), the bedroom was swarming with EMTs and firefighters.  They asked me my name, which I answered right.  Then they asked me what year it was.  Oh oh.  Unbelievably, I couldn't remember it.  More unbelievably, I could do the math necessary to figure it out.  I knew the elections were coming up, they were midterms, and that I'd worked on Obama's campaign in 2008.  He was re-elected 4 years later, and it was 2 years after that, so 2014.  It is the strangest feeling you can imagine to know that some brain functions are utterly impaired (part of my memory, eye control, muscle control) while others work perfectly (math and a different part of my memory).

Then the vomiting started.  Serious, projectile vomiting that lasted, well, I don't know how long but I know that they handed my a bag to vomit in and I was still holding it when we got to the hospital.  They loaded me onto a stretcher (I don't remember that, but I do remember being on the stretcher) and took me out to the ambulance.  I remember perhaps twenty seconds of my time in the ambulance -- just that there were some white boxes lining one wall.  I don't remember being taken out of the ambulance, but I do remember being in the emergency room.

In the meantime, my wife had calmed the kids down, called my mom, waited for my mom to arrive, then drove to the hospital.  A guard came in and asked me if it was ok to send my wife back.  Although it seemed to have happened immediately after being taken into the emergency room, clearly more time had passed than that.  Of course I had them send her back.  Luckily, she brought an iPad and a link to my blog about CPT2.  This gave the doctors the information they needed to understand my muscle disorder.

I don't remember having an IV, although my wife says I did.  I don't remember having blood drawn, although clearly it was drawn because there are blood test results.  I don't remember giving a urine sample (or getting a catheter?), but somehow they got urine since there are urine test results.  I do remember feeling panic set in when they said they were discharging me.  My brain still wasn't working right, so not only did I feel I shouldn't be going home yet, but I was unable to express it.  My wife took me out to the car (did I walk?  was somebody pushing me in a wheelchair?  I don't remember).  I'm guessing I spent the rest of the day in bed, but I don't remember.

I was diagnosed as having experienced vasovagal syncope -- basically your blood pressure and heart rate simultaneously drop and you faint, causing your head to drop to the same level as your heart, reducing the amount of blood pressure required to reach your brain and restoring consciousness.

My symptoms leading to the episode were:

(1) I was on about day 5 of a viral infection.  I was experiencing fever of around 100 degrees.
(2) I may have just contracted strep throat (as one of my daughters tested positive for that the next day).
(3) Fearful of taking medication with Advil (because it is a potential CPT2 trigger) or Tylenol (I worry about Tylenol being hard on the liver), the evening before I took Alka-Seltzer Plus Day/Night to keep my sinus congestion under control so I could sleep.
(4) CPT2:  One symptom I was unaware of at the time was that I was experiencing a mild CPT2 episode.  I nkow this because my CK (Creatine Kinase) was 396 IU/L (normal is between 4 and 161).

The upshot is that I ended up with a concussion.  I felt intensely dizzy and nauseous for the days after the event, and nearly two weeks later, I'm still experiencing dizziness and nausea.  At the beginning I was constantly struggling for words and forgetting things.  I'm still noticing many more typos than normal and some struggling for words, but it seems to have improved somewhat.  I'm told that the post-concussion syndrome can last up to a month.  

I have been thinking that I've been having a really unlucky year on the health front, but I think it is all related.  I don't get sick without feeling it in my muscles.  The night after a CPT2 attack, I normally get low grade fever.  I have issues with triglycerides and cholesterol, both of which are lipids -- just as my muscles cannot burn most lipids due to CPT2.  And to bring it all together, it seems like the CPT2 episodes are becoming more frequent and more intense as I get older.

I don't know what the future holds.  I know my fellow patients have worried plenty about the intersection of major health events (such as removing a tumor surgically) and CPT2's effects (such as the predisposition for malignant hyperthermia under general anesthetic).  I refuse to live a life of worry, but perhaps it is wise to exercise a bit of caution.


  1. An infection or illness of any type is a trigger for sure, and after five days, your body was definitely in trouble. What do you do to treat yourself when you are sick? We push Gatorade (store bought or homemade) and juices. If the kids are nauseated we give Zofran so they can eat. We give them MCT oil throughout the day and if they are really sick, sometimes they get cornstarch mixed in milk for a slow sugar source. For minor illnesses these all work well and keep the kids out of the hospital.
    Caution is good.

  2. Gatorade G2 and MCT oil are my go-to things. I also keep Gatorade energy chews (basically 100 calories of glucose) in my car, office, etc. Unfortunately, I have had a negative reaction to Phenergan in the past, so I stay away from anti-nausea medications unless I really need them.

  3. If you're going to have Gatorade, skip the G2 and use the regular kind. You need the carbs and the G2 has a lot less sugar so it's not helping you very much.

  4. I agree with you on the Gatorade v. G2 during an episode, but for just day-to-day maintenance, I drink so much liquid that if I just had regular Gatorade, I'd be looking at an extra thousand calories a day. I sometimes drink 32 ounces of liquid just during the night.