Living With Pressure They Could Finally See

There are certain weeks in life that divide everything into a before and after.

This was one of them.

Over the last several years, I have constantly been told some version of:

“It’s probably just stress.”

“It’s probably your fibromyalgia.”

“It’s probably anxiety.”

“It’s probably exhaustion.”

And to be fair, I DO have fibromyalgia. I DO deal with chronic pain. I DO deal with fatigue and neurological symptoms.

But deep down, I knew something else was happening too.

Right before Adrian’s work accident back in November, my neurologist ordered an MRI because she became concerned about the level of cognitive decline, memory problems, brain fog, migraines, and neurological symptoms I had been experiencing. It felt more severe than my normal fibro flares.

With dementia running heavily on both sides of my family, she wanted to rule out early neurological changes, tumors, or anything physically affecting my brain.

Then Adrian’s accident happened.

And like a lot of women do, I shoved my own health aside to survive the emergency in front of me.

For months my focus became helping him through his injuries, appointments, stress, pain, and recovery. I kept putting the MRI off until my neurologist finally pushed me hard enough that I went and got it done about two months ago.

I genuinely walked into that MRI terrified they were going to tell me I had a brain tumor or early dementia.

Instead, they found Idiopathic Intracranial Hypertension.

IIH.

Also called pseudotumor cerebri.

Basically, increased pressure around the brain that mimics the symptoms of a brain tumor without an actual tumor being there.

The MRI also showed something called empty sella, where the pressure essentially flattens part of the pituitary area over time. Then the eye doctor confirmed papilledema, which is swelling behind the eyes caused by the brain pressure.

My right optic nerve was completely swollen.

That sentence still does not feel real to me.

The scariest part is that untreated papilledema can eventually lead to permanent blindness.

So while this diagnosis terrified me, it also probably saved my vision.

If my neurologist had not pushed for that MRI, I genuinely could have continued assuming all of this was “just fibromyalgia” until one day my eyesight was permanently damaged.

That realization alone has honestly shaken me to my core.

After the diagnosis, they scheduled me for a lumbar puncture to measure my intracranial opening pressure and relieve some of the pressure buildup.

That part alone was rough.

But what happened afterward was worse.

One of the complications from the lumbar puncture was a CSF leak, and within hours I started getting brutal positional headaches every time I sat upright, stood up, coughed, laughed, strained, or even slightly changed position.

I cannot fully explain the pain of a spinal headache unless you have experienced one yourself.

It felt like gravity itself was crushing my skull every single time I sat upright.

I tried to push through it for several days because I kept thinking maybe it would improve on its own.

It didn’t.

By Sunday morning around 4 AM, I physically could not tolerate it anymore and ended up admitted to the hospital.

Eventually they determined I needed a blood patch procedure to seal the leak.

After the procedure, I had to lay completely flat for 24 hours because they did not want the patch reopening. And I mean FLAT flat. No sitting upright. No standing. No bending forward. Barely moving.

Honestly, just like after the original lumbar puncture, every tiny movement felt terrifying because I was so scared of making the leak worse again.

Even slightly adjusting in bed hurt.

The nurses and PT team slowly had to reintroduce gravity to my body afterward little by little. First slightly elevating the bed. Then sitting up for short periods. Then dangling my feet off the side. Then eventually standing and trying to walk again.

It is honestly wild how quickly your body forgets how to function normally after being forced completely flat for days.

And honestly?

That procedure was one of the most physically intense things I have ever experienced.

Before all of this, I thought a blood patch was just a simple injection.

Nope.

They actually go just as deep as the original lumbar puncture itself, down near the spinal fluid sac again. It is even deeper than where epidurals are usually placed during labor.

Because I was severely dehydrated and my veins were already flattened, bruised, blown, and overused from repeated blood draws and IV attempts, they struggled badly trying to even get enough blood for the procedure.

Eventually they had to use ultrasound guidance and place a deeper intravenous IV in my upper right arm.

Then came the actual blood patch.

Pressure surges.

Electrical jolts down my legs.

Nerve sensations.

Spinal pain.

Intense pelvic pressure.

At one point the pressure became so overwhelming that I genuinely thought I was going to involuntarily poop on the table and had to ask them to stop for a second because my body felt completely overloaded.

And somehow, even in the middle of all of that, there were still moments of kindness that I do not think I will ever forget.

Nancy, one of the nurses, stayed by my head the entire procedure wiping sweat off me with cool towels, brushing my hair back, talking softly to me, holding my hand, and quietly humming because my nervous system was spiraling so badly.

There are people in healthcare who genuinely make terrifying moments survivable.

She was one of them.

The wild thing is that despite how painful the blood patch itself was, the relief afterward was almost immediate.

The crushing head pressure stopped.

Immediately.

And suddenly I realized just how severe the CSF leak actually had been.

Unfortunately the trade off became brutal spinal pain afterward.

The first couple days after the blood patch honestly felt like my entire spine was on fire.

The lumbar pain was brutal, but honestly the post Dilaudid migraines were horrible too. There were moments where the migraine pain, pressure shifts, spinal pain, medication side effects, exhaustion, and overstimulation all stacked together so intensely that I genuinely just cried because my body felt completely overwhelmed.

Slowly the pain has become more localized to the lumbar region and direct patch area instead of feeling like my entire spine was exploding, but those first days were unbelievably rough physically and emotionally.

Then came physical therapy.

And honestly, relearning how to sit upright after days of laying completely flat was humbling in a way I was not emotionally prepared for.

The first time I tried walking, my legs completely gave out underneath me and they had to catch me before I hit the floor.

Part of that was weakness from being bedridden.

Part of it was dehydration.

Part of it was medication.

And part of it was the Diamox.

Because my opening pressure was around 30 and my optic nerve swelling was already severe, they started me aggressively on Diamox to quickly reduce the intracranial pressure and protect my vision.

I am now on 1000 mg a day.

Diamox is no joke.

The dizziness, weakness, fatigue, tingling, dehydration, shakiness, migraines, brain fog, and neurological side effects have honestly been intense.

And because I previously went through acute kidney failure a couple years ago, they now have to monitor my kidneys extremely closely while I stay on it.

Which creates this weird medical balancing act where:

“We have to protect her vision.”

while also:

“We absolutely cannot let her kidneys fail again.”

So now I will be doing weekly bloodwork initially, then every other week long term while adjusting to lifelong Diamox treatment.

It has honestly been emotionally overwhelming realizing this may now be a permanent condition I manage for the rest of my life.

There were definitely a couple moments during the hospital stay where everything emotionally caught up to me too.

One of the hardest moments mentally happened after my catheter shifted and stopped working correctly. I was stuck laying there completely flat, unable to move properly, and ended up accidentally peeing all over myself while Adrian had briefly gone home for the night to sleep and take care of the pets.

And honestly?

That was the moment I finally broke.

Up until then I had kind of just been surviving in adrenaline mode through all of it. The procedures. The fear. The pain. The pressure. The uncertainty. The lack of sleep. The medications. The embarrassment. The exhaustion.

But laying there in my own pee unable to properly move or help myself while feeling completely physically helpless honestly shattered me emotionally for a minute.

I just remember laying there crying thinking:

“What is my life right now?”

And it was actually the first time I fully cried that entire week because everything finally emotionally hit me all at once.

Thankfully the nurses eventually came and helped get me cleaned up and settled again, but emotionally that moment stayed with me.

Ironically though, not even long after THAT, the hospital somehow also turned into one of the most chaotic funny experiences of my life too 😭

At one point the Dilaudid had me COMPLETELY out of my mind.

I was still laying completely flat after the blood patch, so Adrian was literally feeding me a chicken caesar salad in bed because moving hurt too much 😭 Meanwhile monkeys on Animal Planet were absolutely losing their minds on the TV, my catheter malfunctioned AGAIN, and I was simultaneously laughing, peeing myself, and choking on chicken while Cotton Eyed Joe started BLASTING from a commercial right as a massive shift change of nurses and doctors walked into the room 😂😭

Absolute chaos honestly.

I genuinely felt like I was inside a sitcom written by fever dreams and narcotics.

Somehow though, even the first hospital shower became emotional in its own weird way.

It definitely was NOT some relaxing spa moment 😭 I still had to sit in a shower chair the entire time because I physically could not stand long enough yet, I was still in a ton of pain, I could not shave because Adrian forgot my razor 😂 and I basically just sat there holding the little shower hose trying to slowly wash myself without hurting my back.

Nurse Mikia helped wash my back because I was under strict no bending, lifting, or twisting restrictions after the blood patch and physically was not allowed to move certain ways without risking reopening the leak.

Afterward she helped me dry off, helped me get my hospital gown back on, helped me carefully get back into the chair and settled again because I was exhausted and shaky.

Then while I rested, she sat there brushing my hair afterward and halfway through stopped and demanded to know what soap I was using because apparently I smelled amazing 😂

I had brought my pink African net sponge and my "Buff City Soap" (https://buffcitysoap.com?utm_source=chatgpt.com) bars with me.

Narcissist.

Good Morning Sunshine.

The green forest one Adrian loves.

She literally sat there brushing my hair while buying soaps off the website on her phone 😭😂

Honestly though, after laying in a hospital bed for days, finally washing my hair, brushing my teeth, doing skincare, and feeling hot water on my body again just made me feel human again for the first time all week.

Moments like that weirdly mattered so much mentally.

The same way Brandi, another nurse, took me out of the room in a wheelchair on the fifth day just so I could mentally breathe for a little bit after staring at the same four walls for nearly a week.

As she wheeled me out of the room Adrian yelled, “come back soon,” and Brandi laughed and said she was stealing me instead 😂

The same way Adrian stayed with me almost every single day from afternoon until 3 AM despite still recovering from his own injuries himself.

The same way Dawn constantly prayed over me from afar.

The same way my mom kept sending Starbucks to the hospital every morning.

The same way my dad sent gift cards and a care package to my hospital room.

The same way people showed up even when they physically could not be there.

That mattered.

A lot.

Coming home has honestly been both relieving and hard.

The 45 minute car ride increased my pain badly.

Standing in the shower increased it again.

Walking around the house increased it again.

But mentally?

Being back in my own bed changed everything.

Right now I am under strict no bending, lifting, or twisting restrictions for 4 to 6 weeks because reopening the blood patch would mean potentially needing another procedure.

I was discharged with a walker temporarily and Sentara has been incredible helping coordinate home PT, OT, transportation, meal support, a rollator walker, shower chair, and recovery services while both Adrian and I are struggling physically right now.

I also have neurology, orthopedic, PCP, and eye doctor follow ups coming up soon, and Sentara transportation has honestly been helping us tremendously because with both of us using walkers right now, transportation and lifting equipment has become really difficult physically.

We are also praying some of the Diamox side effects eventually calm down, especially the brain fog, migraines, dizziness, exhaustion, and neurological symptoms.

And honestly?

This entire experience has been physically painful.

Mentally exhausting.

Emotionally overwhelming.

Spiritually heavy.

There were moments this week where I felt terrified.

Helpless.

Discouraged.

Embarrassed.

Angry.

Exhausted.

But there was also gratitude.

Because despite how hard this has been, I finally have answers.

And for the first time in years, I no longer feel like my body is screaming into the void unheard.

They finally caught it.

And I am unbelievably thankful they did.

“Come to me, all who are weary and burdened, and I will give you rest.”- Matthew 11:28

Kristen, Unfiltered Xo 💋