chronic illness – Anthea Whittle

The last time I nearly died

Anyone else with a chronic illness will know what it’s like to ride the merry-go-round of medical professionals; and this year I was referred to a new neurologist, who sent me for updated head MRI scans. It’s been four years since I was initially diagnosed with IIH, so an updated image would help her to understand the current situation.

Having had an MRI before, I knew the drill – super attractive smock, lie in a noisy machine. But this time, the specialists chose to use gadolinium dye to improve the images to be taken. I had signed consent for this, having no known reasons that it could be a problem.

Most of the images of my head were taken before the technician advised me that they were administering the dye (via an IV lure that had been placed before I was put in the MRI machine). Within two minutes of the dye being dispatched, I started to feel hot – I can still recall the prickling heat across my chest as I said to the technician “ah, I think something’s up”.

I had an allergic reaction to the contrast dye, which was such a strange experience to me as someone who experiences a lot of pain. I didn’t feel pain, but a rush of other symptoms that the clinical team recognised – I had a shot of adrenaline at the MRI facility and another before the paramedics shuttled me off to the Emergency Department at Auckland Hospital. I really didn’t think things were that bad – I was shaking violently from the adrenaline but not really in pain – so it was a shock to get to the ED and hear “straight to resus” as if I was on Shortland Street!

After the doctors had done their thing and I was in observation recovering, one of the radiologists brought me my belongings and told me that they had managed to get a good range of images of my head prior to my reaction, and it did look like there had been some improvement in the areas of pressure in my brain (which had led to my IIH diagnosis last time).

When I next met with my neurologist, she explained that after analysis of the images, she was lifting my diagnosis of IIH. So I don’t have IIH anymore, just like that. But because I do still have headache constantly and sometimes to a debilitating degree, I got a new label. Chronic Daily Headache with Migrainous Features. Well, that’s a mouthful to say, but most people at least understand what it means – as opposed to my previous label.

Since I don’t have IIH anymore, I also don’t have to take Acetozolamide anymore. Acetozolamide is a diuretic, used to prevent altitude sickness as well as some types of seizures and also a form of glaucoma. The theory in it’s use for IIH as I understand it, is to help prevent the buildup of spinal fluid which was putting pressure on my brain. I don’t know if it ever helped in that way for me, but it definitely caused a litany of side effects especially when I first started taking it four years ago. Pins and needles in my hands and feet, and an increase in the frequency of heart palpitations I get sometimes with anxiety. Since coming off Acetozolomide though, I have also come out of the fog of severe lethargy that was often keeping me from being able to do much more than shower in a single day.

So, while my pain is still present and sometimes ridiculously high, I have more energy and have been able to actually DO THINGS again. Well, not everything, but a lot more than I was accomplishing while on Acetozolamide. I went on holiday with my parents to Fiji and wasn’t the one to bail out part way through our little rainforest hike; I snorkelled and could dive deep and stay down, and I met a manta ray and decided I could probably SCUBA dive again – so I’m looking forward to that.

I’m still not great, though, with daily pain and some annoying triggers (some sound, light, smell can all make things worse) so I’m on a new course of trials. I’m trialling Botox, due for my second administration next week. 31 tiny injections of botox in my scalp and forehead, which helps some people with headaches like mine but not all people. Apparently patients notice improvement within the period of two treatments, which happen three months apart. I don’t know yet if it’s helping, but it’s certainly meant my killer eyebrow raising skills are compromised… I have to try really hard to frown too but apparently people still know when I’m mad!

At the moment, I’m doing more. And perhaps leaning on my painkillers a little too often in order to achieve that. There are a raft of other drugs I can still try, even after six years of trying to sort this all out, but they still know so little about headaches in general.

Doing more does mean doing work too, and a dear friend has brought me into a project which doesn’t require a huge workload from me. For me, it’s a bit of a trial on whether I can cope – physically as well as mentally and I’m hopeful it will go well. I’ll probably have to report back on that one as it happens.

For now, I’m really grateful I had an MRI that apparently nearly killed me, because since, it feels a lot lot more like I’m actually living again.

Hurt

Bolstered during the night,
Clutching bed for comfort on waking.

No relief, no answers.
Silent plea for care, grim understanding.

Plagued and incapable, learning.
Last life’s memories, ignorant jewels.

Sweetness, poisoned by experience.
Let no one else suffer, but they do.

Beyond imagination, reality for us.
All we can offer, a precious spoon.

Relief

I hate answering “how are you?” because the answer is typically “crap”, but the bummer for the asker is a bigger bummer for me who lives it.

Yes, others have it worse. Others share similar stories. This is just one small story of one small day.

No advice please. Do not make a single suggestion. Tweet me @antheaw or read more about my health starting here: The problem with my head, or just the #health tag.

I have used my most coveted pain relief concoction for four out of the last five days. That’s more than I usually resort to within an entire month.

Yesterday, I went without. “Without” does include the following medications which I take daily:

Acetazolamide
Citalopram Hydrobromide
Propanolol Hydrochloride
Paracetamol
Ibuprofen
Clonazepam
Pantoprezole

This list excludes vitamins, contraceptives, a digestive aid I sometimes need to prevent constipation, and additional occasional (i.e not everyday) medications.

Yesterday I woke around 6:30am, helped my partner in the kitchen to prepare for work before settling onto the couch. I have a a guest in the house but I didn’t dress yet. This couch session is for taking morning medication, hoping that being upright will help the fluid drain from my head and lessen the pain of the pressure built up there. #IIH

I played a little Minecraft on Xbox, got cold and too sore, returned to bed around 8:30am, and slept until midday when my guest also got up (they are on a different timezone, different body clock).

They made me poached eggs, I ate two and a slice of toast. My stomach could handle that, just, followed by some tea and a return to the couch. In the dark. It was a beautiful day outside but the glaring New Zealand sun sears my eyes and feels as though it fries my brain.

I researched online streaming, gaming, watched some streamers, played more Minecraft. At least within the game it feels as though I am making progress, and it takes my mind off of so many things until my pain becomes too much again.

Late afternoon, my guest went to walk in the lovely park across the road from my house. I was in too much main to go, and the idea of doing so was awful. It used to make me feel good to do that.

Alone I stretched, some yoga type moves, working with my body weight to trigger my weakened muscles. After more sleep, which is excellent pain avoidance, I showered in the hopes of feeling normal for my partner returning home from work and my friend from their walk.

This was quite an achievement, to shower and wash my hair, dress in clean clothes and get to the couch in one burst of energy and pain. Tolerable for long enough to complete that set of tasks. It’s impossible to overstate how hard a shower can be, not just for me.

By the time everyone returned to the house I was adamant I could do no more. No more. And yet.

From leftovers of two previous nights and various pantry staples I invented dinner, and made a disastrous mess of the kitchen. I didn’t need the food, and I’m finding it hard not to feel or to show resentment for having to provide a meal. My partner loves to cook and often will take over.

There was really no energy left for me to clean up. The only person I was letting down by allowing the kitchen to stay a mess overnight is me. My Mum always cleans her kitchen before bed, even after a party.

I watched TV with my guest and relaxed, I finally started to feel a bit better as often happens at night. My mind off the pain, I enjoyed her company and the show before everyone left for bed while I wanted to savour feeling ok.

If you are in pain and feel horrible 70% of the time, you want to enjoy the remaining 30% of your time as much as possible. I get too excited though, many of the things that I might like to do could set me back to feeling horrendous so, I can enjoy, but have to take it easy.

Bed again, my favourite place in the world but also the last place I would like to be sometimes. Three hours sleep until my partner wakes for work, my cat wedged against my other side, witness to my day.

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)