My IH Journey – The Vestibular Experience

Obviously, being told that there’s not much that can be done on a doctor’s end isn’t very motivational for one to keep up the follow-ups. At least this was my view on things after being told my auditory symptoms would more than likely be my “new normal”.

However, when it comes to unknown conditions, it really is best to play it safe. High intracranial pressure has been known to cause hearing loss in some cases just as it can vision loss, among other unusual auditory symptoms.

Not only that, but an ENT is also your go-to doctor for the vestibular system – i.e. balance issues, dizziness, and vertigo – all of which are very common symptoms of Intracranial Hypertension – and the topic of today’s post.

The Progression of Symptoms

I first began to experience vestibular symptoms, in the form of  dizziness and balance issues, around May of 2017, a time that I believe was the beginning transitioning point of my CSF leak into Rebound Intracranial Hypertension.

The best way I could describe it was I felt that if someone were to simply tap my arm, I would fall over. Even the wind seemed to make me feel light as a feather. The whooshing of the pulsatile tinnitus that was just starting could also have a very dizzying effect.

Between the auditory symptoms and the dizziness, my ENT felt the need to order a CT (which showed no issues) and to refer me to a neurologist. From there on, my IH was eventually confirmed.

Over the next year, many treatment options were tried for the IH, including the placement of a VP shunt* in June of 2018. Unfortunately, my vestibular symptoms not only remained but seemed to increase, adding in brief bouts of positional vertigo as well as frequent motion sickness. Sometimes, it even felt like the floor was randomly being pulled out from underneath me or as if I was in an elevator that had dropped.

(*Note: I was at my worst at the time of getting my shunt, so it’s also possible that these symptoms are not shunt related but just residual damage from high pressure with coincidental timing. The pros of having my shunt outweigh the cons of these symptoms, so if you are considering this surgery, please do not let this scare you. You can read more about my experience with a shunt here.)

New Symptom Unlocked

In 2019, these symptoms hit a peak as I experienced such a severe case of vertigo that actually caused me to fall (thankfully onto my son’s floor bed). It felt as though gravity had pulled me straight to the ground. There were several episodes afterwards of the room spinning until eventually, they resolved, whether due to me self-performing the Epley Maneuver (an ear crystal repositioning exercise) or just time.

This incident was terrifying for the fact that it truly showed how unpredictable IH can be. I thought 2018 had shown me it all, but I suppose I had only let my guard down.

After that, vertigo only seemed to happen if I was lying flat, usually with my head tilted in a certain direction, and would resolve upon changing position.

I tolerated this symptom along with the rest for years up until recently, when things once again began to escalate. I can only assume that I must have stayed in that supine position for too long because this time, the vertigo did not resolve quickly upon moving. It also began to appear with many other head movements and positions.

At night, I would turn to look at the baby monitor, and my head would swirl. I would have to sit up and wait for the room to stop spinning before going to check on my baby. If her breathing alarm would go off, or if I would need to get to her quickly, I would bounce back and forth on the walls of the hallway till I reached her room.

Looking down to feed my baby or doing my daily neck and shoulder exercises would also bring on episodes. My husband might hug me, and turning my head into him could cause major positional disorientation. My head would feel heavy like a bowling ball being pulled to the ground. This time, there was also no preference in side for the vertigo to happen.

Knowing how the 2019 incident caused me to fall, I knew I couldn’t risk letting this go unchecked, especially with having an infant.

I decided to schedule an appointment with the ENT again. Perhaps a new doctor could even give me a fresh take on why my auditory symptoms happen, even if there is no fix. Maybe they could tell me if the vertigo was a pressure issue or a dislodged ear crystal issue, or even if the pressure might be the cause of crystals being dislodged. An updated hearing test with an audiologist could also offer some peace of mind.

After all, as stated in our first post of this series, our bodies give us warnings when things aren’t right. It is always better to play it safe than sorry.

I just never realized that revisiting an old issue could stir up so much – physically, spiritually, mentally, and emotionally.

 Continue reading series here:

• Part 3: The Emotional & Mental Toll of Chronic Illness
• Part 4: The Auditory & Vestibular Experience (Continued)
• Part 5: What Must I Do? (The Spiritual Toll of Chronic Illness)
  

   Or go back to Part I:

• My IH Journey – The Auditory Experience