My IH Journey – The Auditory Experience

It’s hard to tell what exactly was happening the first few months following my son’s birth in January of 2017, but I can pretty much narrow it down to three facts:

1.) My epidural caused a CSF leak.

2.) I received a blood patch as an attempt to seal the CSF leak.

3.) I continued to have neurological symptoms that became progressively worse as my leak rebounded to Intracranial Hypertension.

Looking back while knowing what I know now, many of the symptoms occurring in these early months would seem to have fallen in the low-pressure category, suggesting that the patch was not completely successful. Granted, symptoms were not nearly as severe as they were those first few days following my epidural. Regardless, I could only assume that I was still leaking to some degree and would have to allow more time for my body to naturally form its own patch, as advised by the healthcare team.

By the summertime however, I now know that the symptoms I then began to experience very clearly pointed to high pressure. I can only theorize that there was some sort of transitional rebound period starting around May that hit its full effect by July.

This is why I stress the importance of listening to your body. Our bodies tell us more than we realize and often give warnings when something isn’t right.

In my case, I was able to recognize the warnings by listening to, well, my own ears.

Symptoms Begin

It only took a day following my blood patch for the headaches to return, along with an aching in my neck and back. But perhaps even more pronounced than that was an all-new symptom – ear fullness.

Every morning, my hearing in both ears would become extremely muffled, as if my ears were popped. I could hear my own breathing and heartbeat louder than the sounds around me. My own voice was even too much inside of my head. I would regularly hang my head down to relieve the ear pressure in order to hear normally again.

This was extremely frustrating considering how many visitors we were having to celebrate our new baby. I felt the need to avoid people and conversations just to not have to deal with the difficulty I was having hearing.

This symptom became even more challenging once I started back at work after my six-week maternity leave. Even at work, I would often hang my head under my desk so that I could hear phone calls properly.

Around this time, I was able to see my OB for my six week follow up. We discussed my experience with the CSF leak and the ongoing symptoms. Without having any reason to associate auditory symptoms with this incident, he suggested we first rule out allergies (which I had never had prior) before seeing a neurologist. I was referred to an ENT.

The Search for Answers

Now of course at the time of my ENT exam, I was not experiencing any ear fullness, even though I had tried to schedule it in the time frame the symptom usually occurred. My hearing was also great according to the tests performed by the Audiologist. I left with a prescription for Flonase which resolved nothing.

The closest I ever came to a doctor catching this symptom in action was when my ears became muffled as I was leaving the clinic once, to which I quickly asked if she could check. The only thing she could see was that my ear drum appeared “sucked in”. Though at this time, we didn’t really have much direction on what could be causing this.

Fortunately or unfortunately, as my follow up drew near, more symptoms had started to occur, including dizziness. This was enough for a CT to be ordered and for me to finally be referred to neurology.

It was in the midst of this healthcare transition that rebound IH was clearly taking place, though I still didn’t know it just yet.

From Low to High

By the summer of 2017, with dizziness and achiness ramping up and more and more symptoms developing (like waking up every morning as if I had the flu), I was once again hearing my body’s warnings in my ears – a symptom that I can now identify as having been the start of Pulsatile Tinnitus.

Pulsatile Tinnitus – a “whooshing” type of tinnitus in sync with your heartbeat; one of the most common symptoms of Intracranial Hypertension (read more here)

It was this key word of “whooshing” that led me to the ultimate discovery of what was now wrong: my CSF leak had rebounded into Intracranial Hypertension.

This symptom, combined with the fact that my positional symptoms seemed to have reversed (being upright and active felt better than being flat), is what gave us and my neuro team the information we all needed to pursue the possibility of IH. In October of 2017, I received my first spinal tap and with it, an official diagnosis.

The End of the Line

About one year after discovering that both the muffled hearing and the whooshing (as well as several other auditory symptoms) were all related to my Intracranial Hypertension, I decided to visit the ENT again to hopefully find out if anything could be done to resolve these particular symptoms.

Unfortunately, the answer was not very hopeful. While suggestions were made on what might possibly help, the ultimate answer was that until my pressure was under control, these symptoms would likely continue. “My new normal” were the words used, words I’ve always hated to hear and words that left me feeling little need to follow up with the ENT again.

Where We Are Now

Seven and a half years later, these auditory symptoms remain a nuisance, even to the point of causing mood swings while they are active. Though thankfully, they are never painful. I never did receive clear answers as to why they happen or how they can be resolved, but on the positive side, they have become a beneficial gauge in how I manage my symptoms.

In that first wild year of trying to find out what was wrong with me, I quickly learned that I could “listen” to my ears in order to determine whether my pressure was high, low, or stable.

The pulsatile tinnitus never occurs when my pressure is low. Likewise, the ear fullness never seems to occur while my pressure is high. In fact, it was after a lumbar drain and high dose of IV diuretics that my ears became fuller than ever before, confirming my theory.

(Note: Ear fullness could also be a symptom/residual effect of high pressure, but for me, the achiness that tends to come along with it seems to point towards low pressure. More on this topic here.)

I still look back in horror at the days that I thought I was managing a leak by lying flat, when in reality I was only worsening my undiagnosed high pressure. And it still blows my mind (no pun intended) to look back at how my rabbit trail of finding answers started with something as simple as “allergies.” This only goes to prove once again the importance of listening to your body and advocating for yourself.

Thankfully, as we live, we learn, and I have learned a lot since these symptoms first came on. Now, it is my goal to share everything I wish I knew then with the hope that someone who needs this information will find it, hopefully early on.

If that is you, then please don’t hesitate to reach out. You can also find more information on the auditory symptoms of Intracranial Hypertension here or continue reading along in this series about my experience with all sides of the auditory and vestibular symptoms of IH.

 Continue reading series here:

• Part 2 : My IH Journey – The Vestibular Experience
• 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)