My Auditory & Vestibular Experience (Continued)

In previous posts, we’ve discussed how my auditory and vestibular symptoms came to be as well as the emotional and mental toll it can all take. Today, we will get back to the experience.

It’s been 7 1/2 years since my epidural kick-started a whole train of auditory and vestibular symptoms, and here we are visiting the ENT once again. (Which by the way, I’ve just learned that there is actually a specialist called a neurotologist! How cool is that!)

When my vertigo recently escalated, I knew I wanted it addressed, but I honestly felt the situation was fairly insignificant. I had no idea that going back to the ENT would cause such a disrupt in my symptoms (or that it would have ended in me writing a whole series of posts!)

I’ve always said that anything out of my ordinary day tends to bring on symptoms. My pressure is just sensitive that way. But this certainly proved it down to the smallest change.

Back to the Doctor

My initial visit with the ENT wasn’t much of an issue. The only thing that messed up my pressure was the temperature change of entering and exiting the car and building.

It was the Audiologist appointment that really did it. In order to check for a possible crystal issue (a dislodgment of the calcium carbonate particles in the inner ear) or have the Epley Maneuver performed (a head turning maneuver to reposition these crystals), I needed to hang my head in certain positions that happen to be infamous for increasing my pressure.

A brief moment of this normally isn’t too bad, but what I didn’t realize about the Epley Maneuver is that it can actually come with after-care instructions. This is where things started to go downhill fast.

Post Epley Maneuver

Following the Epley Maneuver, I was instructed to pretend I was in a neck brace for the next 48 hours. I was also told to restrict certain sleeping positions over the next few days to avoid the crystals entering the canal again. This was a problem for the following reasons:

Typically, I can only remain in a single position up to around the one hour mark before symptoms start to occur. For example, watching a movie pretty much always ends in a headache. Standing up cooking dinner requires sitting breaks in order to avoid the spinal fluid pooling in my lower back. Also, throughout the day, I usually perform multiple exercises that I learned in physical therapy that help prevent or relieve any neck, shoulder, head, or back pain.

At night, the process and purpose of CSF is in full swing, making sleep already a touchy situation for those with Intracranial Hypertension. Aftercare for the Epley Maneuver requires that you avoid lying flat or turning onto the affected side for several days following.

Some may find this beneficial, as IH patients are often advised to avoid lying flat anyway and to even sleep propped up or on a wedge. However, I personally find this causes me more pain as it seems to “kink” the flow of things in my neck. For me, I find the most relief with something rolled under my neck while I sleep. This seems to help things flow much better, but this could also compromise the success of the Epley Maneuver.

Needless to say, keeping my head in one position all day and all night did not lend to positive pressure symptoms. (Oh, let’s also throw in a six month absolutely awful sleep regression from the baby girl, keeping in mind that lack of sleep in general does not allow for the proper cleansing and flow of CSF. More about that here.)

A Never-Ending Cycle

You would think that once these restrictions were lifted, symptoms would go away. That’s not exactly how IH works though.

Once the pressure goes up, the pain and inflammation begin. The longer the pressure is up, the longer the pain and inflammation tend to last. Then it quickly becomes a vicious cycle where the pain and inflammation start to cause the pressure to go up.

Go figure that at this time, I was having a hard time getting my medication refilled for this inflammation specifically, so symptoms continued for days afterward. I had to keep reminding myself that this was all because of the change in my routine and not because my shunt was failing, a constant concern of mine.

On the plus side, I was eventually able to get my medications refilled to be able to start to break this cycle. On the bad side, it ran into the new 48 hour window of not being able to take these medications prior to my upcoming balance test.

This might not have been too big of a deal had this test also not required that I refrain from caffeine beforehand.

While caffeine can be hit or miss when it comes to pressure, it was certainly a miss at this time. Here is where I really began to think that maybe my shunt actually wasn’t working after all. If this is how my body reacts to a few normalcies being taken away, then my pressure is more sensitive than I thought.

My First Balance Test Experience

My husband asked if I should reschedule my balance test appointment, but in no way did I want to have to go through any of this a second time. In fact, if the Epley Maneuver turned out not to work, I really considered just accepting the vertigo. Anything else seemed to be asking for pain.

Of course, I did not experience any dizziness whatsoever during the balance test, only one miserable headache, worsened by the movements and positions that the test required.

Out of all the tests I have ever had, there have only been three where I didn’t think I could take it anymore: an MRI where I was in excruciating pain the entire time, my ICP monitoring (where I did actually ask to be discharged), and this exam.

I’m not saying it’s a terrible test. I’m just saying it doesn’t exactly feel worth going through when you’re in pain. When you’re wearing electrode ear plugs that intensify the sound of the pulsatile tinnitus, having your headache rocked back and forth within your skull, and dipping your head down to let all the excess fluid pool around your brain, suddenly brief episodes of the room spinning don’t seem so bad.

I couldn’t wait to get out to the cup of coffee and medicine waiting for me.

Moving Forward

So finally, my experiences with the ENT were over. My balance test results were… you guessed it, perfectly normal. The next test that could possibly show anything would be a CT specifically for the bone nearest the inner ear. The cost doesn’t feel worth it at the moment, especially when the odds of it revealing anything are slim.

With the vestibular and auditory symptoms having few answers or solutions, I likely won’t bother to schedule another ENT appointment unless something new comes up.

They’re definitely an important doctor to have on your team, but this field is still limited in terms of IH. So while I had originally thought this post series might seem a bit pointless, perhaps the point is to bring awareness to this side of IH.

Maybe the auditory and vestibular side effects of IH need more research, and maybe the patients experiencing symptoms in this area need to know they’re not alone or crazy in feeling what they feel.

So if you’ve read this far, I hope you have been able to gain something along the way. As always, never hesitate to reach out with any questions.

 Also Included in this series:

• Part 5 – What Must I Do? (The Spiritual Toll of Chronic Illness)

   Read more of this series:

• Part 1 : My IH Journey – The Auditory Experience
• Part 2 : My IH Journey – The Vestibular Experience
• Part 3: The Emotional & Mental Toll of Chronic Illness