Imagine your battery is running on red, it’s critical at 1%, and your charging wire is faulty, so when you attempt to recharge, you recoup to 10% at best, always running in the red.
The panic that your computer will crash at the wrong moment and ruin your latest work or before saving those precious holiday photo memories is ever-present.
Now, what if we weren’t talking about your laptop but your body; this is what life is like for me living with IIH.
I live in a perpetual state of exhaustion. My heartbeat can be deafening.
I have a condition called Idiopathic Intracranial Hypertension (IIH). Which simply put means my brain is quite literally under pressure.
In America, they use the term Pseudo Tumor Cerebri for my condition. It is Latin for a false brain tumour. I mention this because it’s quite an apt name since IIH can cause the same symptoms as a non-cancerous brain tumour. In IIH, the excess cerebral spinal fluid causes increased pressure in the skull instead of a space-occupying lesion (tumour).
When your brain is under pressure, it feels like your head is in a vice. It causes the most excruciating headaches that aren’t relieved by any form of pain killer. Morphine makes you care less about the pain, but it’s still there. The only true relief is to remove the pressure, which requires an invasive procedure called a lumbar puncture.
Though, in my case, the headache is my least concerning symptom. I get episodes where my vision blacks out in areas. I recently woke up and couldn’t see out of my right eye. It was genuinely terrifying. This is what they call a red flag symptom and means I have to go to the hospital as soon as possible to get my pressure reduced.
My mental ability declines slowly as the days tick by since my latest lumbar puncture. I start to lose the ability to think, remember things, and speak in sentences. I am writing this only a few days after a lumbar puncture. This concentration level will be beyond me until my next procedure in a couple of weeks.
I can last approximately two months before I start needing another lumbar puncture. It was three months before I managed to get one this time, so I was pretty desperate. I knew things were getting bad when I couldn’t manage to find simple two-letter words in a game of scrabble with my mum without her assistance, and I was nearly passing out from the exhaustion of just trying to play the game.
The vision episode said I needed to get seen in the hospital.
My symptoms became an emergency, so I had to attend A&E. However, it is a very predictable situation, so ideally, I should be using the outpatient facilities to get regular lumbar punctures.
Since a bed is needed to perform a lumbar puncture and the NHS is incredibly busy, it proves impossible. The emergency services are the only way to access the treatment to save my eyesight and restore my cognitive abilities.
I arrived at A&E to find that it was standing room only. The hospital was so busy that ambulances were queuing outside, and patients were standing in the aisles waiting for treatment. Luckily I take my own seat with me wherever I go. Thankfully, my mum was also allowed to stay with me as my carer. They are extremely strict about the carer rule, so I was very thankful that mum “passed muster” and was allowed to stay with me; I’d never had managed alone.
The doctor told me he would admit me to the ward ten hours later. However, there were no beds, no surprise, so I would likely still be sitting in the department at breakfast.
The contrast of using A&E during the height of the pandemic when people were too scared to go into a hospital to now is stark.
I sat the lone patient in the waiting room more than once during the peak. I was the only patient on an eight-bed bay too. Now, there are no beds, and patients are waiting all night in a packed waiting room.
Three days later, when the right Dr’s and the suitable space become available simultaneously, I finally get my procedure.
Unfortunately, it is not an easy process. My back is difficult to perform a lumbar puncture on for all but the most experienced, so, unfortunately, the first Dr to try fails.
I am lying on the bed in the foetal position whilst the Dr is poking a large needle around within my spine, trying to get it in the correct space to draw off some of the excess spinal fluid causing all the problems. She hits a nerve, and I get shooting electric shock type pain in my hip, and I cry out. Another attempt results in the needle grinding along the edge of one of my bones, and I scream out in pain as she removes the needle.
She decides that she isn’t going to manage to access the space and asks another Dr, a neurology registrar, to step in. Fortunately, after a couple of attempts, he manages to get the needle into the right place and start to measure my pressure.
It’s very high as predicted, so fluid is slowly drawn off into bottles.
I have to lay flat for 45 minutes after my procedure because the puncture hole must start to heal and not continue to leak. After all, you do need some cerebral spinal fluid. It is there to look after your brain.
My raging headache is gone. I sit up and tell the nurses excitedly how I’m feeling so much better. It is as if my brain is starting to unfurl from the pressure. I can feel it starting to come back to life. I can think more clearly, talk better.
I started making arrangements to be discharged from the hospital as soon as possible.
I now have a couple of golden weeks where my brain will work reasonably well, and I can try and get as much done as possible.