I’ve been thinking about writing this post for a while, but haven’t quite known what to say. But today, I’m laid flat out in bed after a lumbar puncture yesterday, and in five days I’ll be on the Gold Coast. So, it seems like a pretty appropriate time to talk about this.
I have a neurological disorder called Idiopathic Intracranial Hypertension. The way I explain it to most people is “my brain is swelling against my optic disc and no one knows why”. The slightly less glib explanation is that there is increased intracranial pressure (pressure around the brain). IIH leads to swelling of the optic disc, which has already happened for me—that’s how the condition was picked up.
Another name for IIH is pseudotumour cerebri, because it mimics the symptoms of a brain tumour. My symptoms include severe headaches/migraines, nausea, pulsatile tinnitus, papilledema, and transient visual obscurations. In others, it can also cause sixth nerve palsy, vomiting, dizziness, double vision, peripheral vision loss, and in about 5-10% of cases, leads to disabling vision loss. It occurs in about 1 per 100,000 people —in other words, about 45 people in New Zealand, or 74,000 people worldwide.
Lucky me, right?
Diagnosis involves a CT scan to make sure there are no lesions on the brain (otherwise it’s not a PSEUDOtumour anymore), and then a lumbar puncture to confirm opening pressure and check cerebrospinal fluid for abnormal cells, infections, antibody levels, the glucose level, and protein levels. If the opening pressure is above the normal range (normal cerebrospinal fluid pressure is 10-25cm of water; my pressure yesterday was 46cm), but everything else is within its normal limits, then Idiopathic Intracranial Hypertension is generally the diagnosis.
Doctors really don’t know a lot about this condition. Their main focus is on the prevention of vision loss and symptom management. It usually appears in overweight or obese women of childbearing age; for that reason, most doctors recommend weight loss as the be-all and end-all of treatment. There is medication, such as acetazolamide (Diamox), that reduces cerebrospinal fluid production, which is prescribed in some cases. In very serious cases, a stent can be surgically inserted into the transverse sinus.
So, why am I writing about this on my travel blog? As you can imagine, a neurological condition makes travelling somewhat difficult. Travel insurance is more expensive, making plans or booking tickets for specific dates always makes me a bit nervous in case a migraine forces me to cancel, and I’m always wary of any long travelling days. It’s an extra level of planning and awareness I need to deal with that most people don’t. I have to be especially aware of change and cancellation policies for events, or what options are available to me if I just need to nap for a while.
It would be so easy to just hide away at home and never go anywhere. But I refuse to do that. I love to travel, and I won’t let my illness keep me from enjoying my life.