health – MJ in NZ

Health Update

This year hasn’t been great for me so far. I’ve had near-daily headaches that I assumed were due to a flare up of my Idiopathic Intracranial Hyptertension, but a recent Lumbar Puncture showed that my pressure was normal. So, possibly these are yet another stress-induced issue: migraines. I’ve been “treating” the headaches with paracetamol & ibuprofen – which brings them from an 8/10 on the pain scale to a 5/10 – because opioids can increase intracranial pressure. However, I’m only allowed to medicate for 3 days a week, so that’s been fun!

In November, I had an allergic reaction to an unknown trigger, and in addition to facial swelling, a bright red itchy rash covered my face, neck, chest, belly and legs. I’d had a similar reaction in the year previous, so assumed it was some seasonal allergen. Ended up taking a couple of weeks worth of Prednisone, which cleared the rash but left me with a nasty case of folliculitis (aka random spots of acne in odd places all over my body) that I then had to take antibiotics to treat. Because my body doesn’t like to do anything right, I then had recurrences of the hives & itching!

My GP has diagnosed stress induced urticaria (and to be fair, being a chronically ill person in the middle of a pandemic is fairly stress-inducing), and her dermatology referral was declined because apparently they’re not taking appointments due to Covid. Nice. So I am still insanely itchy and covered in rashes. It’s not helping my mood, as you can imagine.

The pandemic has set my anxiety & agoraphobia back to “shitty”, after I’d made quite a lot of progress in 2018 & ’19. I don’t want to catch Covid – I’m triple vaxxed & wear double masks when out (which is only when absolutely necessary). I don’t know how my body will handle it, as I have many co-morbidities that would complicate a recovery. Last time I got the ‘flu, even though I was vaccinated, I also developed pneumonia. It sucked, and so I’m not taking Covid lightly.

Anyway, I’m ready to trade in my body and upload my consciousness to the internet whenever Big Tech is ready!

Life, And Other Four Letter Words

Depression. Anxiety. Idiopathic Intracranial Hypertension.

And then, because my spouse believes sharing is caring, a cold. Ugh. It has been nearly 10 days since I first felt the nasal drip start, and I am SO over it. All this coughing makes my headaches worse, which is fun.

In spite of all that, I feel like I’ve been pretty productive over the past couple of weeks. At the start of this month, I really wanted to withdraw, retreat from the world and be a hermit, have some ‘me time’ – all that jazz. Instead, the Universe decided I actually needed to be kept busy! So I’ve had doctors appointments, and therapy sessions, and group meetings, and outings and so on.

Last Friday was spent helping my dad pack up his stuff and move house… to my place. Yep, we’ve got a flatmate again.

Finally picked up last years financials from the accountant… at least I made it before this year’s are due, ha.

photo of a baby girl lying in crib We’ve celebrated three birthdays this month: my BIL’s partner turned 32, my MIL turned 56, and my newest niece made an early appearance on the 27th. She’s my brother’s second child, first daughter – and has added an Aries to their household of Capricon + Leo parents with Leo son. That is a lot of fire signs in one house… and some stubborn women. Good luck to ’em! Anyway, that many b-day gifts means I am BROKE and it sucks. Time to start hocking my junk on Trademe.

Hubby and I had planned to go see the whānau this weekend, but my cold has ruled that out. I don’t think I’m contagious, but it’s not worth the risk, as my new niece weighed in at 5lb 14oz at birth so will be delicate for a while, and no doubt the fam will be in and out visiting her and/or her mother. It does mean I’ll be here when BIL and his fam swing back through, so hopefully we’ll catch up and I can give the kids their easter eggs. We don’t celebrate easter for religious reasons, but any excuse to give chocolate to people is a good excuse in my opinion!

photo of black and white cat facing camera My furchildren are both well; Bucky is growing in leaps and bounds. Lilo chases him around the house, but we’re no longer worried that she’ll actually hurt him if she does manage to catch him. That’s unlikely, though; he’s fast! And liquid when he wants to be.

He’s still adorable, and we’re pretty sure we’ll be able to teach him to fetch. He loves carrying things in his mouth, and will often bring toys to whoever is around. However, he’s also become something of a mischievous little shit – trying to jump out windows, chewing his food mat, beating on Lilo, pinching things from hubby’s office and stashing them in odd places. So naughty, so cute. What can ya do? When he rubs against you and purrs, you’ll forgive him anything.

Well, Lilo might not. She’s not so easy to win over.

Treating IIH

Okay, so I have previously complained about my IIH headaches and the fact that they can’t really be treated with most forms of pain relief medication, but I didn’t really explain that in any depth.

There’s some evidence that opioids like codeine can raise intracranial pressure, and I can testify to that. I’ve tried both immediate release and prolonged release versions, and neither were helpful. Last time my headache reached 7/10 level pain, I went to the emergency department at the hospital, and they tried me on codeine… an hour later, my headache was worse, more like 8 or 9 outta 10! So yeah, flag that.

Paracetamol and ibuprofen, when layered correctly, can take the edge off, but as you’re not supposed to take them continuously, having non-stop headaches for over a month has these less efficient.

So here’s my methods of coping:

I take 25mg of Topamax three times daily. It makes me sleepy, which is fine because when I’m unconscious, there’s no pain. 😉
I sleep on a ramp of pillows, so that my head is elevated. This helps prevent my ICP from rising and making the headache worse.
I use ice packs, including a gel eye mask that hubby searched multiple pharmacies for, to cool everything down whenever I have a chance to sit.
Every 3 days, I take a pain break and use Panadol & Nurofen to get some relief. I also have some harder stuff for when the pain is 8/10 but I’m very wary of opioid addiction, so I avoid it if at all possible.
I practice breath-focused meditation, which is fantastic for surviving chronic pain.
I’ve made a herbal-infused massage oil that either I or hubby can massage into my temples, forehead or neck & shoulders to ease tension and some pain.
Kitty snuggles. It’s amazing how much better you feel with a purring kitty cat on your lap.

IIH – Irritatingly Impairing Headaches

Okay, I admit, that’s not really what IIH stands for. In actual fact, it’s Idiopathic Intracranial Hypertension, a.k.a. Pseudotumor Cerebri and it means that there’s too much cerebral spinal fluid in the subarachnoid space in the brain, causing high pressure that results in all sorts of fun symptoms.

For me, it’s currently showing itself as non-stop headaches that rate on a pain scale from 4/10 all the way up to 8.5/10, and are immune to or made worse by most forms of pain relief medication.

0-10 scale of pain severity

With the head pain comes nausea, pulsatile tinnitus, and increasing difficulty with vision as the pressure gets more intense. It’s… less than ideal.

I was initially diagnosed in 2013, after a visit to the optometrist ended with a referral to the ophthalmology clinic. I’d been having headaches for a while, but put it down to needing a new glasses prescription. Turns out my optic nerve was swollen, which is one of the symptoms of IIH (as well as a bunch of other stuff which had to be ruled out, yay). After spending an entire day at the eye clinic, I was referred to the neurologist, who prescribed me a medication called Diamox while he put me on the wait list for a lumbar puncture. I was also recommended to lose weight, as one of the suspected triggers for IIH is sudden weight increase and/or obesity. The Diamox, otherwise known as acetazolamide, gave me an incredible pins & needles sensation in my hands, but didn’t do much else. I lost more than the recommended weight, but with no relief. And then came the LP.

I was lucky enough (she says, tongue firmly in cheek) to have a medical student there for my LP, so he gave it several tries – to the point that a 10 minute procedure became a 90 minute one, still unsuccessful. My poor hubby, never great around needles, was waiting down the hall, freaking out as the longest 10 minutes ever stretched on and on. When I finally gave up and asked them to stop, he came in to find me curled, crying, on the bed, covered in marks and iodine. It was not a great day.

So, back on the waiting list I went, until April 2014 when a slot opened and I was able to have a fluoroscope-guided LP. It still wasn’t easy – even getting a line into a vein required the doc to use an ultrasound machine and the procedure itself took 90 minutes – but I was zoned out on pain relief for most of it. I say most, because the worst part for me was the 2 hours I spent post-LP, having to lie flat so as to avoid a low-pressure headache. I’d forgotten to use the toilet beforehand, and by now my bladder was close to bursting, but I was damned if I was gonna use a bedpan or have a catheter inserted!

With IIH, a lumbar puncture is both a way to diagnose and relieve the symptoms. My pressure was definitely high, and they removed 30ml of fluid. The next day, no more headaches. Like magic, only science. And maybe a big dose of luck, because it doesn’t work for everyone.

So now I’m waiting again, this time on a different medication called Topamax, for my neuro & LP referral to come through. Tonight is a good night; I’ve only had 2 paracetamol, and my head pain is down to 4/10 so I can actually think.