The problem with my head.

I plan to write a few posts about my health issues.

I explain this stuff over and over again to friends and acquaintances, and with some big recent developments I want to start sharing the info online.

Primarily, it’s to inform people I’m lucky enough to have care about me, I’m not trying to reach a wider audience but obviously this stuff ain’t a secret.

If you wish to talk to me about it, please do so via twitter: @antheaw, or on Facebook if we’re friends there.


Since late 2012 I have had a hurty head.

Migraines where I have to hide in my dark bedroom, often with sunglasses on in order to look at my phone or computer on their darkest setting for some entertainment. Migraines where the sound of our microwave shutting sends an explosion of pain through my cranium.

I have had up to two weeks at a time suffering from a migraine or extremely bad headache, where in the “headache” stage I can actually get up and function semi-normally while coping with the pain whereas full blown migraine just writes me off and curling up in bed is the only answer.

This is pretty disruptive to life! I have spent a lot. A LOT. of time and money with doctors, trying to find relief for my symptoms, reasons for them and treatments. The only relief I have ever found is double the usual dose of ibuprofen (the same stuff that’s in Neurofen) and Tramadol combined. One type of drug alone does not work at all, but both together bring some relief. 

I have spent a lot of money on seeing a Neurologist, whose examinations showed everything to be ok, and who prescribed different medications.

I had a great job, at the company formerly known as The Radio Network, now the Radio department of NZME. I would have many days off, many days coming late to the office as I spent bad mornings in bed waiting for painkillers to work. I would look and feel pretty rubbish but work hard to still get all my tasks completed. Some days I could work from home, with my curtains drawn and sunglasses on and phone calls conducted at their lowest volume as the sound coming from the speaker echoed pain through my head.

Fun things were given up, like concert tickets and trips away and nights out with my friends. I started hesitating to make any commitments as I had no way of predicting wether I would be well enough to fulfill them and I hated to let people down, felt like a flake and a failure when I had to send another “Hey sorry, I can’t make it, I’m not well.” text to a friend.

On the 20th of this month, it’ll be a year since I quit my job to focus on getting better. Through trying to treat the issues with my head, the depression I have struggled with for most of my life was also diagnosed and treatment for that begun. Without a diagnosis for what was causing the pain in my head however, there was still no real treatment plan.

I started working freelance, taking on a handful of hours work each month which meant only a few meetings and most of my work done from home and when I was capable of doing it. It was a massive relief to no longer feel I was expected to show face in an office every day for a set amount of time, even though my employers had been excellent about my situation.

Around August, I had a really terrible migraine which started one evening and sent me to bed early. This happens often. In the morning, when it was worse, I reached for my painkiller cocktail only to have it rejected by my body and thrown back up into the bin. This is terrifying, when the only relief you know fails for you, what can you do?

I was unable to get out of bed, but I sleep with my phone under my pillow so WAS able to call my sister, in tears, and eventually get out that I needed her to come and help to take me to the doctor. She made an appointment with my GP, dressed me and it took a very very long time to get out to the car and down to the doctor’s office.

Laying in the dark nurses office I was prepared for some sort of injectable relief, I don’t even know what it was, but my sister’s rubbing of my arm became more insistent as the nurse revealed the administering needle. “This patting is for me, not for you, that needle is fucking huge!” she told me. I didn’t care, I just hoped it would help. In fact, the way they grilled me about wether I had an addictive nature, and warned me that I may be a bit “funny” after the injection, I hoped it would give me some kind of high. It didn’t, it helped the pain enough that I was able to walk out to the car by myself and to spend the rest of the day in bed without feeling as though my head was being torn apart from the inside. Go figure.

After this episode and feeling so terrified, I pushed my GP to get an MRI scan, which my Neurologist ordered. Those things are also not cheap. My appointment was made fairly quickly and I lay in the noisy box keeping very still for what seemed like an age. I was pretty disappointed it was nothing like the MRI scanner I had seen in a TV show, which Walter Bishop used on Fringe.

I was sent a CD with some software on it and images readable by this software which show the scan of my brain. I had to dig out an old Windows computer to be able to look at it, but had no idea what I was seeing. My brain, sure, but was there anything wrong with it?

My neurologist explained that I didn’t have anything seriously and immediately wrong shown in the images but that the pressure in my head seemed elevated, and the next step was a lumbar puncture. Also known as a spinal tap, it’s a needle inserted into the spinal cord to test the pressure of fluid there and to extract fluid for testing. It’s a bit like having an epidural but they take liquid out not put it in. And I didn’t come out with a baby afterward. 

That procedure showed the pressure in my fluid was indeed elevated, though the fluid itself is normal and healthy. And so I was given the weirdest diagnosis that went something along the lines of “there is a condition that is diagnosed in the absence of any other explanation for your symptoms, when an MRI and a Lumbar Puncture indicate that spinal fluid pressure is high”. The condition is called idiopathic intracranial hypertension, and I was told it’s like having a brain tumour without actually having a brain tumour. In years past it was assumed to be a tumour until science advanced. 

The raised pressure also raises pressure in certain vessels and veins in the brain and head, including sheaths around the optic nerves which could effectively choke them. There is a risk to losing eyesight from the condition, and I really quite value my eyesight! Scary times.

So I had a label! It’s a somewhat rare label, and my neurologist explained that while the cause is unknown, the condition seems to affect mostly women in my age bracket and mostly women who are overweight, though not exclusively women, not all women who are overweight.

After two years of searching for what might be wrong with me, I did not mind being told this at all. It was a lot different to the experience I hear of often, where an overweight person visits a doctor and immediately is told to lose weight – even when the reason for visiting is unrelated or the patient shows no signs of ill health caused by their weight. 

So while losing weight isn’t guaranteed to fix the condition with my head, it wouldn’t hurt (and as I see it, would benefit in other ways too). My neurologist also surprised me by acknowledging that losing weight is the hardest thing to do and to maintain.

About that comes next.

(Part 2: Fix my tummy, fix my head)

Nerveburger

Tomorrow I’m going to have blood removed from my body, mixed with citrate, and separated. The red blood cells and citrate will be returned to my body, and everything else donated.

It’s going to take an hour. The plasma taken from my blood could be shipped to Australia to create blood products which are returned to New Zealand for people’s medical treatment, or used in education.

I’m a regular whole blood donor, but recently the New Zealand Blood Service have been on a drive for more Plasma donors. 

Plasma can of course come from whole blood donations, but not as much can be gathered, – if the donor loses too many red blood cells, they will become anaemic. By this method of donation, up to 12 times more platelets (which help blood to clot) and 2-3 times more plasma can be donated in one sitting.

Because the components taken from your blood with this kind of donation are faster to regenerate, plasma donors can make donations every two weeks – rather than the three months whole blood donors wait. Find out more about Plasma donations in this PDF.

I’m on the bone marrow list too, being a common Kiwi mix of “a bunch of races” – Maori, Irish, English, who knows what else… I could be a match for someone with a similarly tricky genetic combination. Cancer is horrible and if there’s a chance I can save someone from leukaemia, I’m up for that.

As usual before a donation, I’m nervous. 

My left arm has a good spot of scars from my prvious donations (not really that many – this guy reached 500!). Once, when I was doing my second whole blood donation while at high school, I had an unfortunate experience which involved a bloodied white uniform shirt.

The plasters leave a dramatic bruise on my inner arm too, I had a pretty good one for last year’s Webstock and felt like a junkie with my messed up vein.

I don’t like donating blood. You get cookies, which are bribe enough for some, but my real driver for donating is that it’s something real that can be done to help people.

I like to think that if anyone I know was in a car accident or needed a blood transfusion (like my great aunt is having right this moment), I could potentially have helped save their life. Friends of mine are having babies now, and any one of them could need or could have needed blood to save their, or their babies’ life.

One day, I might need blood, and there will only be blood there if people keep donating.

If you’re not a donor already, hop over to the NZ Blood service website and have a read. The donor centre in Epsom is super well appointed, has carparks aplenty and is open late nights every week. The nurses are lovely, and yes, there are bikkies and free wi-fi aplenty.