My Journey with IIH

Over the years, my friends and loved ones have been confused with my wide array of physical and mental health issues. Whilst they support me as best they can, they often don’t understand why I experience so many problems. The answer, however, is quite simple:

I have chronic Idiopathic Intracranial Hypertension (IIH).

A Little Ancient History

It all began well over thirty years ago. I had just moved to Atherton, North Queensland, after “coming out” to my biofamily and fleeing from the fallout. I started suffering from extreme headaches, which would often last for days. Then came the epileptic seizures, followed by blackouts and fugue states. Intersperse some delusions and fatigue, and I wasn’t leading a good quality of life by any measure.

I spiralled downward. The delusions had me in their grip, and hallucinations were a constant torment. My eyesight started to blur, and the headaches grew gradually worse. I knew I was out of control, and there was nothing I could do about it.

My GP, along with most of the ER doctors, were convinced I was a junkie, just looking for pethidine or valium. At times, I even believed them. After all, I did feel better with drugs on board. It wasn’t until one particularly nasty seizure resulted in an ambulance ride to Cairns and a fresh look by a different set of healthcare professionals that my path to a diagnosis began.

I had my first lumbar puncture when an ER doctor noticed something in my eyes: Papilloedema, swelling of the optic nerve. The pressure of my cerebrospinal fluid (CSF - the fluid that cushions the spine and brain) was high… high enough to need draining back down to regular human levels. The change was immediate. I had energy! I could see clearly. The hallucinations and delusions abated. It was a relief.

That sense of relief buoyed me for a few months, then the headaches came back. Ultimately, I spent two months in a hospital in Brisbane while neurologists worked on a diagnosis. It was probably the most intense, horrifying time of my life. The possibilities put forward by these doctors included:

• Multiple schlerosis
• Cardiomyopathy
• Schizophrenia
• Cancer
• Autoimmune disorders

Ultimately, their conclusion confused them but there was no other possible diagnosis: I had IIH.

Back then, it was called Pseudo Tumour Cerebri (PTC - False Brain Tumour, due to the display of brain tumour symptoms without any actual tumour). It was only seen in young women, mostly pregnant young women, and was typically transient. But the diagnosis was borne out by subsequent lumbar punctures and tests to rule out any other possibility.

Over the years, PTC was renamed to Benign Intracranial Hypertension (BIH). After a while, it was renamed again to Idiopathic Intracranial Hypertension (IIH) because there’s nothing “benign” about the condition. The word “idiopathic” just means the experts have no idea what causes it.

Armed with that diagnosis, I’ve learned to manage my condition and achieved a decent quality of life. But it hasn’t been easy…

My Laundry List of Secondary Diagnoses

IIH, to me, feels like the innermost layer of an onion. It’s wrapped in outer layers, often confusing the issue with new symptoms that lead to other diagnoses. These diagnoses are secondary diagnoses: a result of the IIH. However, that doesn’t make these secondary diagnoses any less real or concerning.

I’ve built up quite a laundry list of secondary diagnoses over the years, including:

VISION IMPAIRMENT:

• Constant pressure on the optic nerve can cause damage, resulting in peripheral vision loss or even blindness.
• In September, 2012, I woke up to ‘blindness’. I wasn’t completely blind, but I had no peripheral vision, and the tunnel of vision I had was dark and blurry.
• An optic nerve fenestration is a procedure where a hole is cut into my optic nerve to help drain the excess CSF.
• I had my first optic nerve fenestration procedure performed on my left eye in January 2013.
• I had a second optic nerve fenestration procedure performed on my right eye in June 2016, which restored my sight.

TRANSIENT ISCHAEMIC ATTACKS (TIAs):

• Swelling and pressure can temporarily restrict blood flow to the brain, causing a TIA.
• My first TIA occurred in March 2008, flying from Santorini Island to Athens.
• My TIAs have always happened around flights, or periods of high stress.
• Some TIAs are far more severe than others. Mild TIAs just require rest for a few weeks. A severe TIA needs months of rehab and physio.
• I no longer fly, due to the risk of TIAs

MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME (ME/CFS):

• ME/CFS causes extreme exhaustion, joint pain, flu symptoms, brain fog, and a host of other random symptoms such as swollen lymph nodes and sore throats.
• Those are my typical symptoms, but every person struggling with ME/CFS has their own set of issues to deal with.
• Initially, ME/CFS would raise its ugly head for a while then slowly go away. However, it has now been a constant companion since November 2016.
• Brain fog can last weeks, months, or even years. It’s not unusual for me to come out of a period of brain fog, only to find that a long period of time has passed.
• ME/CFS symptoms worsen with exercise.

FUGUE STATES:

• ‘Dissociative fugue, formerly called a fugue state or psychogenic fugue, is a rare psychiatric phenomenon characterized by reversible amnesia for one's identity in conjunction with unexpected wandering or travel. This is sometimes accompanied by the establishment of a new identity and the inability to recall personal information prior to the presentation of symptoms.’ - Wikipedia
• Most of my loved ones have, at one point or another, helped Pig track me down after I’ve wandered off in a fugue state.
• I’ve been picked up by police and taken to hospital in a fugue state on more than one occasion.
• According to Pig, my most common fugue is reverting to a childhood state.
• As far as I can recall, my last fugue state was sometime in 2020.

SCHIZOPHRENIA:

• I’ve had hallucinations for well over thirty years, mostly involving dragons and dinosaurs. I guess I was destined to become a fantasy writer 💁‍♂️
• I was diagnosed with schizophrenia in May, 2019, after finally seeking psychiatric help in mid 2018.
• Schizophrenia dictates my levels of anxiety and mood.

I have a slew of other symptoms which have ebbed and flowed, such as tinnitus and sensitivity to extremes of temperature, but the issues listed above have been my major concerns over the years. To complicate matters even further, I’m diabetic 😬

I Did Myself No Favours

My preferred treatment, for most of my adult life, was to have a lumbar puncture whenever the CSF pressure became unbearable. It was probably the wrong way to go, but I refuse to look back with regrets. Other options always existed, and were offered, but I always declined them for one reason or another. Those reasons may not have always been solid or based on a firm grip with reality.

There are a few things I’d like to point out which highlight how I did myself no favours in managing my IIH.

1. Pig and I have moved around a lot. And I mean, A LOT. We’ve moved from Brisbane, to Melbourne, to Montreal Canada, then Vancouver, then Manchester UK, then Luxembourg, then back to the Gold Coast, then Wellington New Zealand, and now Canberra.
2. We’ve rarely lived anywhere longer than two years.
3. Every time we moved, I had to establish myself with a new team of healthcare professionals whom understand IIH and my need for lumbar punctures.
4. There were periods when I hated the idea of being someone with such a debilitating condition. I just wanted to be normal. So I’d ignore my IIH, convincing myself I’d grown out of it (or some bullshit like that) and end up right back at the beginning, with symptoms raging out of control.
5. As a general rule of thumb, I had a lumbar puncture every 3-6 months.

Essentially, if we had stayed in one place and I’d been under the care of a single team of healthcare professionals all this time, my outcome may have been better. who knows 🤷‍♂️

My Current Status

Despite the bleak tone of this blog entry, I’ve had some wins over the years. I have not needed a lumbar puncture since my second optic nerve fenestration in June, 2016. That same procedure also restored my sight 🎉

As of time of writing this blog entry, my main concerns are tinnitus and ME/CFS.

TINNITUS:

• I’ve always had tinnitus as a result of the IIH, but over the last few years it has grown louder and more distracting, pulsating with my heartbeat and blocking out other sounds.
• I have just (one month ago) been fitted for a set of hearing aids, an act which prompted all this introspection and blog entry.
• The hearing aids seem to be helping 👍

ME/CFS:

• My only ongoing issue which requires constant management is ME/CFS.
• Sleep is not refreshing, and I need at least two naps every day.
• I pace myself to spread out my available energy.
• I often exert myself and end up with Post Exterional Malaise (PEM), resulting in a sore throat, swollen lymph nodes, aches and pains, and brain fog.

When we moved to Canberra, just over two years ago, I discovered the world of functional medicine. I’m now on a strict protocol of amino acids, vitamins, and various other supplements to help manage all my symptoms. I follow a restrictive diet, and do what exercise I can. I take a lot of tablets and have multiple shakes of various powders, every day. But it’s worth the effort.

The first amino acid I tried was arginine and, fifteen minutes after my first dose, my hallucinations disappeared. I’ve experimented a couple of times since then by going off arginine for a few days, and the hallucinations always come creeping back.

But the biggest change I’ve noticed is my mental clarity. Fugue states, anxiety, and brain fog have all reduced signifanctly. So I’m not going off these supplements. Not now. Not ever.

I’m enjoying having my brain back. I’m enjoying being able to write, once again.

What Does The Future Hold

I’ve seen understanding and acceptance of IIH grow within the healthcare community over the decades, so I’m no longer viewed with suspicion as a lying junkie when I present myself at an ER. Now, I’m just a curiosity of a kind that doesn’t present itself too often. Even the acceptance of ME/CFS has improved, given its close association with long COVID. I feel confident, now, approaching a healthcare professional and telling them I have IIH without fear of derision.

As for the holes in my optic nerves, they’re working great. But, given the fact they’re wounds in the human body, my body keeps trying to seal them up. If that happens, the procedures can be repeated 👍

With the lack of understanding and all the stigma at the start of my journey, my relationship with my biofamily has been irreparably ruptured. I’m not innocent in this, as my behaviours before diagnosis were awful. But that’s a topic for a future blog post. In fact, there are several things I’ve touched on in this post that I’ll expand into their own blog entry, eventually. Until then, I’ll just keep taking my supplements, closely monitoring my energy levels, and watching out for the return of any other symptoms.

If you’re struggling with your own set of issues, be they from IIH or some other source, keep going! Perseverance does pay off!

Thanks for reading 🙏