My Experience with Post-Concussive Syndrome and Benign Paroxysmal Positional Vertigo (BPPV)

Our vacation did not go quite as planned…As I was going into our RV while we were at Fort Churchill on the afternoon of May 24th, I stepped up and right into the bottom of a kitchen cabinet.  I hit the cabinet with the top-left part of my head hard enough that I had hubby check to make sure that it was not bleeding.  It wasn’t. That evening I was feeling a bit tired, but thought that it was just because we had had a busy day of exploring. I had basically forgotten about hitting my head earlier.

When I woke up the next morning, I had the most extreme case of vertigo ever. I did not really know that is what it was, because I have had vertigo before and it was NOTHING like this. The whole world was spinning and swirling. I had trouble staying upright and was literally laying against the wall when I was trying to stand.

I have had three other concussions (bad enough to need care at a hospital and quite a bit of other head trauma) before and none of that affected me in the same way as this event.

Even though my heart wasn’t hurting and my left arm was fine, I began to worry that maybe it was something like a heart attack. It was such an extreme feeling of something obviously being completely wrong that I figured it had to be something really bad.

Hubby drove me back to town and took me to an urgent care facility. After they performed a cat scan on my head, they were completely baffled and sent me directly to the emergency room at the main hospital. They wanted me to go there, because they had the best neurologists on hand. The doctor even called the hospital to tell them I was on my way.

I had to be in a wheelchair, because any movement made me feel like my whole body was spinning uncontrollably and I had extreme bouts of heaving.

The emergency room doctor noticed the way I was heaving (and what it looked like), so he was concerned that maybe I actually had an intestinal blockage of some sort. He then ordered a cat scan of my abdomen. He was concerned that my dizziness was actually being caused by a severe blockage issue. Fortunately, that was not the case.

Because I was quite dehydrated and obviously extremely dizzy, he wanted to keep me overnight. Hubby and I both felt better with me staying overnight to be watched, too. We still had NO idea what I was actually dealing with. The emergency room doctor that replaced the first one was telling me that I just had a case of vertigo and it might be “awhile” before it went away. Since this was NOTHING like the vertigo I have had before, I did not really think she knew what she was talking about. This was not the kind of vertigo where the floor seems to be moving and tilting. This was the whole world spinning, swirling, and dancing around. I did not even need to have my eyes open or really even move at all.

The next morning as I read my menu that came with my breakfast, I saw that I had been diagnosed with Post-Concussive Syndrome. Although I still had no idea what that was, at least I now knew a little more about what I was dealing with.

Another doctor came to see me that morning. He basically just said that I have Post-Concussive Syndrome and that he had it before, too. He then proceeded to tell me that his lasted nine months and he was basically worthless for that time. With that… I could just go ahead and go home. ~ All I could think was, “Thanks for the encouragement…”

While I was getting ready to leave, a Physical Therapist came by and apparently had heard that I was there and what my symptoms were. She said that she could do a simple/quick test to see if I had BPPV and if I did, she could help it go away much sooner… but it would make me extremely miserable going through the test and cure if I did have it. I was miserable, so this little bit of hope (while being scary) was something I had to grab onto.

She was right. It was TERRIBLE! It turns out that I have BPPV and my right side of my head was the side affected. The test for it was literally torturous, but the cure was even worse. It made my spinning and heaving much worse than it even was the day before. My son, “Buddy”, actually thought that it was “cool” when he saw my right eye zooming back and forth and basically spinning as she tested me.  Ya… thanks! lol  He also thought that my crying repeatedly, “Where is up?” when she was doing the cure method was quite funny. Ya… I was really feeling the love. So glad I was entertaining everyone.  😉

If it wasn’t for this one Physical Therapist noticing my symptoms and stopping by to see if I wanted her to test me, I still would not know completely what is going on and my symptoms would be much worse.

It did truly make it MUCH better after she was done, but it did not go completely away. It has been two weeks and it is still driving me nuts! I cannot drive, because if I move my head quickly and/or wrong, my brain starts spinning. I have only gone out once since then, too. I was feeling quite a bit better about a week ago and went out to eat and shopping with hubby and buddy. By the time we were on our way home, though, I was worse again. This is why I have been a bit MIA lately, too.

I also still have an extremely sore right hand from the lengthy attempt by the REMSA student trying to put my IV into it. I was very dehydrated and it was more difficult than usual to get my vein. Fortunately, the student promised to try on the next patient and encouraged the RN to do mine. He got it in my arm relatively easily and I was SO relieved. The top of my hand is still almost entirely a sick greenish-purple and super sore.

I have found that it really helps to look over to the left and down when the dizziness sets in. It usually helps it end quicker. This was just discovered by trial and error. I really wish they would have told me to try it to see if it helped. With my BPPV affecting my right side of my head, it actually makes sense that this would help. It also really gets it going bad if I look to my right or tilt my head back and to the right (which is actually part of how the PT discovered that I indeed had BPPV and it was my right side that was affected).

I also have had to research myself to learn more about it. I just discovered today that there is a relatively simple “fix” in Canada for this and that some people who have dealt with it for over 20 years are finding it extremely beneficial when their BPPV reappears about every six months. It is basically a contraption attached to a hat that leads them through some maneuvers with their head as they move this little ball through a tube. It seems to move those little “rocks” that are loose back into place.

Thinking back on it, I am really irritated by one of the assistant nurses in the emergency room. He asked me if it actually helped me to just look out into space like I was? I immediately and calmly said yes and it was true! For some reason it did help when I looked over to the left (which seemed to be “out in space” to him). I did not understand until a few days later why. He was treating me like I was just putting on an act or something until I started heaving uncontrollably again.

I found this video that shows what my eyes do when I move “wrong“. This is definitely one of those times when a picture/video is worth a thousand words. It is called Nystagmus and it basically means that your eye(s) is/are visibly bouncing around (and no wonder you are super dizzy!).

I am also trying to research if my Parkinson’s might be making this worse or in any way affects the BPPV or is affected by it. I cannot find anything, yet.

The good news is:

  • I AM getting better
  • I am optimistic
  • I have a lot of people praying for me
  • I plan to look into this therapy from Canada

Thank you everyone for your prayers and encouragement!* Check out my update at:  BPPV and Post-Concussive Syndrome Update ~ Plus New Primary Doctor 

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