My Life With IIH, “the good, the bad, and everything in between”
Finding meaning in life.
As long as I can remember, I’ve always been curious about our existence.
I wondered why some people were born poor and some with a silver spoon. Why are some born with incurable diseases and suffer till their last breath, while some stay healthy for most of their lives?
Is the human race a coincidence, or are we part of a larger plan?
Well, I believe we are all here for a specific reason. A reason beyond physical existence. And therefore, whatever happens to us, the good, the bad, the ugly, everything has a reason to it.
My life with Idiopathic Intracranial Hypertension (IIH) …
I got diagnosed with IIH (Idiopathic Intracranial Hypertension) in June 2024. It’s a chronic neurological condition where you experience increased intracranial pressure with symptoms ranging from mild to severe headaches, ringing in one or both ears (pulsatile tinnitus), and vision disturbances.
However, I’ve only one symptom, pulsatile tinnitus in my right ear. I hear a continuous whooshing sound day in and day out.
During my first meeting with my neurologist, he checked my MRI scans, which showed elevated CSF, clearly a sign of IIH, but to be doubly sure, he suggested a fundus eye test to assess papilledema ( swelling in the optic nerve). And guess what, I had swelling in the optic nerve in both eyes.
I was on medications, acetazolamide (diuretics), for about 4 months.
After a normal fundus eye test in September 2024, my doctor asked me to put off the medications.
I still have pulsatile tinnitus to date as I write this, but no other symptom persists. Though I get a mild pain in the back of my head and eyes occasionally, but not quite often.
The doctor gave me medications to help relieve pressure building in my head and eyes due to increased CSF. But unfortunately, he couldn't treat my pulsatile tinnitus. I’m still living with it.
So, fast forward to this day, how is my life with IIH?
I live a fairly normal life with god’s grace. I’ve read bone-chilling experiences of people having IIH on the internet. How IIH has distorted their lives, preventing them from living normally.
There are days when I’ve to drag myself to work, on some days I can't sleep due to the constant whooshing sound in my ear. I get mild headaches if my day gets hectic.
It’s been more than a year since I haven't slept on my left side. Because of the constant whooshing sound in my ear, I either sleep in a supine position( facing upwards) or on the right side. There are days when I wake up with stiff muscles around my neck and shoulders.
But I still feel lucky, I'm in a far better condition than you could imagine an IIH patient to be in. A good lifestyle, along with yoga and meditation, has kept me going on this journey; otherwise, I could have easily succumbed to the disease.
Final Thoughts
This piece is not only for people suffering from IIH. But for anyone who is battling with something in life. Life isn't easy.
Whoever is reading this, I want you to realize that you are not going to be the same forever. You may be healthy now, but god forbid, there will come a day when you might not be your best self.
We take this body for granted. The message is to love yourself. Life’s too short to compare yourself to others.
Lastly, one thing that has helped me stay put in this whole situation is to accept the way life is. And the mindset that I'll change what I can and accept what isn't in my control.
Trust me, it lifts a huge burden off your shoulders. Because now you’re channeling your energy towards what can be improved and not focusing on something you can't change.
That’s when you find peace.
