Living with Idiopathic Intracranial Hypertension (IIH) for years, I experienced a series of symptoms that many doctors brushed off as common, but now that I have the proper diagnosis, everything finally makes sense.
Here’s a list of the symptoms I’ve faced that, at the time, didn’t seem connected but now make total sense given my IIH diagnosis:
1. What I Thought Was Terrible Allergies
For years, I assumed the constant nasal congestion and pressure in my head were from allergies. Turns out, it was a symptom of the pressure from spinal fluid that comes with IIH.
2. Severe Brain Fog
Brain fog is a common symptom of IIH that often gets overlooked. It made it difficult to concentrate, remember things, or even complete everyday tasks.
3. Dizziness
A feeling of lightheadedness or dizziness often accompanies IIH due to the pressure on the brain and inner ear, which affects balance.
4. Whooshing Noise in My Head
This sensation, often described as a whooshing or pulsatile tinnitus, was another symptom of increased pressure in my head, a classic sign of IIH.
5. Fatigue
Chronic fatigue was one of the hardest symptoms to deal with. IIH often leaves you feeling drained, even after a full night’s sleep.
6. Ringing in My Ears
Like the whooshing noise, ringing in the ears (tinnitus) is another symptom linked to IIH. It’s caused by pressure affecting the auditory system.
7. Thunderclap Headaches
These sudden, severe headaches felt like a thunderclap striking my head. They were intense and often felt like the pain of a migraine, but more acute.
8. Swelling
Swelling, especially around my eyes and face, was another sign that my body was dealing with inflammation from increased pressure caused by IIH.
9. Blurred Vision
Blurry vision and seeing blind spots became increasingly common, one of the most obvious signs that something was wrong. This symptom is often linked to the pressure IIH places on the optic nerves.
10. Night Sweats
Night sweats, while often associated with other conditions, turned out to be yet another sign of the systemic effects of IIH on my body.
11. Eye Floaters
I constantly saw spots or floaters in my vision, which is another symptom that now makes sense with the pressure on the eyes caused by IIH.
12. Extreme Head Pressure
This is the hallmark symptom of IIH. It often felt like my head was in a vice, and the pressure would increase with certain movements or during the day.
13. Extreme Light Sensitivity
IIH and light sensitivity often go hand in hand. Bright lights, screens, and even sunlight would trigger headaches and make me feel worse.
14. What Felt Like Constant Sinus Infections
The feeling of pressure behind my sinuses and around my face was often mistaken for sinus infections, but it was actually due to the pressure buildup in my skull.
15. Heartbeat in My Head
The feeling of hearing my heartbeat in my head, or pulsatile tinnitus, is another IIH symptom that made me think something was off but wasn’t immediately linked to IIH.
16. Hearing That Sounds Like Noise-Canceling Headphones
A constant hum or whooshing sound, similar to what noise-canceling headphones create, became a regular issue due to IIH.
17. Hormone Imbalance/Deficiency
IIH affected my hormonal balance, making me feel off in various ways, from irregular periods to fluctuating energy levels.
18. Clumsy AF... Walking Into Things
The pressure in my head would make me feel uncoordinated and clumsy—another frustrating symptom of IIH that wasn’t initially understood.
19. Feeling Like My Brain Is Trying to Get Out of My Head
This sensation of pressure and discomfort made me feel like my brain was literally pushing against my skull, a sensation only those with IIH truly understand.
20. Spinal Fluid Leaking from My Nose
At times, I noticed fluid leaking from my nose, which was a sign that my spinal fluid pressure was out of control, a common issue in IIH.
Have You Had These Symptoms? What Are Yours That Now Make Sense?
I get it, living with IIH can be isolating. If any of these symptoms sound familiar, I want to hear from you. It took me years to get answers, and I know how important it is to feel like you’re not alone in this journey. What symptoms have finally made sense for you? Share them below—let’s keep this conversation going and raise awareness together.
If you’ve recently been diagnosed with IIH or think you might have it, know that you’re not alone. Don’t hesitate to reach out, share your experiences, and continue the conversation about this rare and often misunderstood condition. Join the IIH Gang community or check out my IIH Awareness Merch!