The Auditory Symptoms of Intracranial Hypertension
Did you know that the first sign I experienced of something being wrong was hearing trouble?
I was two days post-blood patch from my CSF leak when my hearing became completely muffled. It felt as if they were stopped up entirely. And I only grew increasingly frustrated with having to constantly hear my own breathing and heartbeat louder than the sounds around me. This pressure was only relieved by lowering my head, which obviously I couldn’t do in casual conversation.
This symptom seemed to come on in the morning, shortly after waking and starting my day. It would then typically disappear on its own around lunchtime. Meanwhile, work phone calls were answered with my head tucked under my desk just to be able to hear properly.
Allergies. That was my first diagnosis. I was prescribed fluticasone which did absolutely nothing.
Weight Loss. That was my second diagnosis. Being I had just lost tens of pounds from pregnancy, there had obviously been some shifts around my inner ear. Apparently this is a common symptom for those who have just undergone Bariatric surgery.
But do you want to know what it really was? Intracranial Hypertension.
The Root of It All
Intracranial Hypertension is a condition where spinal fluid levels within the head exceed the normal limits. This condition is most known to cause symptoms such as headaches or vision trouble due to the pressure pushing on the optic nerves.
But ask most patients with this condition, and they will tell you that one of their biggest symptoms involve an auditory issue. In fact, some patients have been known to lose full or partial hearing from the damage this condition can do.
Unfortunately, this condition is still very much a mystery. There are not many answers as to what causes IIH or even the symptoms that develop from it, including the auditory ones. But just like this pressure can damage the nerves to the eyes, it is equally capable of damaging the nerves to the ears.
There are many auditory symptoms that tie in with this condition. Let’s try to narrow them down:
Your Eustachian tubes are narrow passageways that run from your middle ear to your throat. They help with draining fluid and equalizing ear pressure, such as when approaching high altitudes.
If these tubes become blocked, ear fullness can occur. Tinnitus, ear pain, ear tickling, etc are also symptoms. This can occur in one or both ears.
You may notice symptoms of ETD during allergy season, due to all of the mucus and congestion blocking these passages. But for those with IH, spinal fluid may be the clogging factor. In fact, this fluid may even leak out at times!
How To Describe It:
- Like when your ears pop (but never release that pressure)
- Like the sound of wind hitting a microphone
- Like swallowing pop rocks, a crackling almost ticklish sensation
- Like hearing your own breathing
- Like hearing your own heartbeat
- Like hearing the sound of rolling thunder when you breathe
- A muffled sensation
- Ear fullness
- A stuffy feeling
- A stopped up feeling
What Can Be Done
There are treatment options that your ENT can help you with to relieve this annoying sensation. However, oftentimes, this symptom cannot be cured until the cause itself (IIH) is under control.
Personally, I have learned over time that this symptom does not present itself when my pressure is high. In fact, one of my worst episodes with it occurred following a spinal drain while I was on very high amounts of IV diuretics (Lasix and Diamox). Perhaps this is a rebound effect for me after a high pressure episode, or perhaps my extra fluid simply makes its way to the auditory portion of my head. I can only continue to theorize until I find more answers. The timing of it (mostly morning hours) is also under research.
We’ve all heard of tinnitus – that “ringing” in your ears that only you can hear; a mix up of nerve signals often caused by auditory damage. Well pulsatile tinnitus is a rare form of tinnitus that sounds to be rhythmically in sync with your pulse.
While regular tinnitus doesn’t exactly have a physical source, pulsatile tinnitus does – blood flow. With pulsatile tinnitus, you are actually hearing your own blood coarse through your arteries. And pressure issues such as IIH or high blood pressure can make this sound of blood flow very noticeable and even maddeningly loud.
Pulsatile tinnitus first began for me approximately four months following my CSF leak/blood patch. Before I ever knew what it was, I could only describe it as the sound of someone banging sheet metal off in the distance – but in my head. “Whooshing” turned out to be a much easier way to describe it. Though in reality, I feel like “roaring, angry waves” does it more justice.
How To Describe It
- “Whooshing” sounds/ sensations within the head
- A roaring in sync with your pulse
- Like waves rising and crashing in your head
- Like a dishwasher cycling in the background
- A pulsing white noise
Interestingly, pulsatile tinnitus is also often only heard in one ear, though it can be heard in both.
Personally, the higher my spinal fluid pressure, the louder and more intense the whooshing. It may also be brought on by lying on the affected side.
What Can Be Done
Once again, the treatment for this symptom is to treat the underlying condition that causes it (IIH). Scans and tests may be able to identify stenosis (narrowing) of a vein causing this issue, which can often be addressed via stenting.
Again, there may be no telling what sort of damage IIH may be doing around the nerves of your head. Even simple tinnitus is not out of the question. (Side note: prednisone made this symptom worse for me).
Auditory hallucinations are also more common than you might think. If it is normal to “see things” (auras) during a migraine, then why would it seem odd to hear things?
Personally, this condition has caused me to hear more than just an imaginary dishwasher running in the background. Have you ever been sitting next to someone who has headphones on? You hear something playing but you can’t seem to make out what it is? Or maybe you’ve randomly heard a baby cry from the other room?
You hear things, but you can’t always make it out – because there is nothing really there to begin with. It’s strange, I know. Frightening, maybe. At first, I thought it was all in my head (which technically it is). But then, through this outreach, I discovered I am not alone in these matters either.
*** Side note: if you are hearing sounds (or voices) that have no rational explanation, please contact a medical professional for help.
If these sounds (or voices) have become tormenting, please feel free to reach out, and we would be more than happy to pray for you!
Meniere’s Disease is an inner ear disorder known for causing dizziness, vertigo, and hearing loss.
Currently, we do not have sufficient information to cover this topic, but we would still be more than willing to discuss it!
Please research this condition and contact a medical professional (ENT) if you are experiencing these symptoms.
Remember, this is the central nervous system we’re talking about. The brain. Damage it, and there is no limit as to what else in the body can be affected.
This is why it is so important for anyone who is dealing with Intracranial Hypertension or any of these symptoms to follow up with a professional ENT on a regular basis. I am merely a patient, but I believe it is very important to speak up about these issues until we can find answers and solutions.
Say to those who are fearful-hearted, “Be strong, do not fear! Behold, your God will come with vengeance, with the recompense of God; He will come and save you.”
Then the eyes of the blind shall be opened, And the ears of the deaf shall be unstopped.
– Isaiah 35:4-5
Have you experienced any of these bizarre auditory symptoms?
Let us know your experience in the comments section below!
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12 Comments
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Solveigh Jäger
What for Scans do you mean to diahnose ehat made the pulse in ear. I have tinnitus since leak and it changed after time to a puls tinnitus that made pain in back legs feet.
April Normand
I would recommend seeing an ENT for auditory symptoms. If pulsatile tinnitus is suspected or experienced, a neurosurgeon could perform and angiogram/venogram to thoroughly check for any stenosis that could be causing it. I hope that helps! Thank you for reading and your question!
Amber Turner
I was diagnosed with IIH (aka psuedotumor cerebri) in 2017. My experience started with I was having what I thought was headaches all the time. I had been telling my pcp for 2 years and was always saying my blood pressure was the problem (was on bp meds). So I took it upon myself to go to ophthalmologist and he saw my optic nerves were being in short terms strangled and very swollen. He sent me to a more advanced ophthalmologist who sent me for a mri, referred me to a neurologist. Neurologist performed lumbar puncture and sent me for a venogram which came back as IIH with stenosis of the right transverse sinus which then I had 2 stents placed and angioplasty. Had what they called the honeymoon period and fast forward to last year around August was at work and clear fluid started dripping from my nose (it was cerebral spinal fluid). Went to hospital for bad pressure they said headache said nothing wrong with me and sent me on (thinking I wanted pills).
Finally able to get in to neurologist and went through all the test again. MRI, ophthalmologist, lumbar puncture, venogram and it was determined that in fact my IIH reared its ugly head even worse this time around and now my left transverse sinus was completely diminutive. So now not only eye pain and ears constantly going in and out, sounding like a bomb went off inside my head literally, pulsatile tinnitus (ringing in ears to the extreme sometimes), tired all the time. IIH takes a real toll on your body. If anyone is having pressure aka headaches all the time, eye pain that feels like tiny boxers beating the back of your eyes, ears ringing please make the Dr’s listen to you. AND WEIGHT IS NOT THE CAUSE OF IIH (I’ve lost ton of weight and it’s even worse this go around!)
April Normand
I am so thankful you shared your story and experience! You are very right, keep advocating for yourself. You know your body best, and it is worth fighting for. How are you now?
Jill
I was treated for years for IIH presenting with papilledema, headaches, and tinnitus. I stayed on furosemide and methazolamide for a long time. Finally, my neuro-ophthalmologist sent me to a neuro-radiologist that had been doing stent work. They did my angiogram and found the source of my problem- transverse sinus stenosis. The stent was placed and like magic I had no more headaches. Optic nerves returned to normal within weeks. Fatigue faded away. Pulsatile tinnitus gone. The one thing I was left with hearing loss and ringing. Turns out the pressure and the mediations to treat it caused auditory nerve damage. I wear hearing aids now at 43. They mask the ringing beautifully and I am getting great hearing results from them. Oddly enough my ENT visit was a wash and I was told that with a mild loss at my age I would t wear them so why bother. I went to an audiologist for a second opinion and she said “you have hidden hearing loss! It doesn’t all show on the Audiogram because you hear the beeps…but the beeps aren’t talking to you in a restaurant!” So my mild on the Audiogram loss is actually a little more significant taking into account how loud the ringing is and my environment. I was so relieved to be heard and getting these hearing aids has been a game changer! I had no idea how much I was struggling. I didn’t realize that the ring is also my brain trying to fill the void of what it can’t hear. No one ever discussed hearing loss with me as a symptom of IIH- I did the research on my own and my audiologist was the first to confirm to me that it is a real side effect she had seen before.
April Normand
Thank you so much for sharing your experience with all of this! It could help someone more than you know! I’m glad stenting has helped you and that you were even able to find help through hearing aids. This auditory area of IIH could definitely still use some work and research. I’m glad you were able to find a doctor in this field who was willing to help and dig deeper. Thank you for sharing the hope that things can get better with this!
Ciara
Hello, I was diagnosed in May 2023. I had pulsating tinnitus and got my ear cleaned at the doctor’s office only to go to the eye doctor a few days after my appointment to be sent to the emergency room for IIH. I believe birth control threw off my body and caused me to have IIH but that’s my own logic. I had experienced the static noise ( for me it was like standing in the country and it is pitch black and outside was making that specific noise, if you know you know.) so I had been experiencing tinnitus and ringing in my ears since May even after the diet change. It just never stopped, so I made an appointment with an ENT in July and didn’t see them until the end of September. I found out I have mild/moderate hearing loss in both of my ears and need hearing aids. The crazy part is before all of this, my hearing was okay. like I thought my mishearing things was from auditory processing issues because I have ADHD. I’ve always had problems with understanding and processing what people were saying but it wasn’t as bad as it had gotten. I kept getting caught off guard when people walked up to me because I didn’t hear them (or see them because my blindspot is still large from my swollen optic nerve), and my family/friends were getting annoyed. I couldn’t understand them when they were talking to me in restaurants or whispering. They’d be like if you didn’t understand “just say what,” instead of what you think you heard, I’m like no why would I do that? I’m saying what I thought I heard you say, and you will have to correct me. I knew I had to do something about my hearing issue when I couldn’t hear the ambulance until they were right up on me and I couldn’t hear my TV or radio at my normal volume. The ENT says I have Sensorineural hearing loss. I’ve had hearing aids since October and they do help with the tinnitus but I hate explaining to people what happened.
April Normand
That was an excellent way to describe what it is like living with IIH and how it affects all of our senses. It’s amazing that it’s still not fully realized how much damage this condition can actually do.
Also, you could be right about your cause. Some forms of birth control have been known to cause this. Hormones play a big role.
Thank you so much for sharing your experience with this! I know many people will be able to relate to you, and I appreciate that. I’m also glad the hearing aids have helped some.
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