"Where there is creativity, there is hope." ~ Donna Karan

The mystery of the dilated pupils {part 1}

by - Monday, July 02, 2012

I guess you could call this a health update. Things have been pretty crazy around here lately. My immune system has been partying hardcore these last few weeks.

It was four weeks ago now when I woke up to a throbbing headache and pressure behind my right eye. The pressure was to the point where I was worried that I would go blind. I've never had pain like it. The previous day, before the onset of the headache, I was unusually dizzy, so I naturally thought the two were connected.

A few days later the pain and pressure progressed to my nose and underneath my eyes as well. Then I experienced a couple of episodes where the vision in my right eye went crazy- one day I was seeing coloured circles and the next, despite being able to read, white blank gaps appeared in the words I was reading with my right eye.

And that's when I totally started freaking out. Where was the pain coming from? Was it my eyes or my nose? What was the pain? Was it a side effect of my medication? I knew that a couple of my medications could cause eye problems so I jumped on google and Web MD, and soon wished I hadn't. According to the information I found I either had:

- A rare side effect from years on Plaquenil known as hydroxychloroquine retinopathy, which is not always reversible.
- A tumour caused by my many medications (no, I do not have a tumour google, thankyouverymuch)
- Neuropathy and Optic neuritis. Humira can cause optic neuritis, which is an inflammation of the optic nerve; causing nerve damage.
- A strong sinus infection, which is apparently a common side effect of Humira.

These drugs are serious stuff, so excuse me for freaking out a little bit. But I think I'll take the last option, thanks. I did suspect a sinus infection, but I didn't think it explained the eye problem, or the dizziness. Maybe I had a sinus infection and an eye problem as well and they just happened to debut at the same time? Yeah, good luck to my GP figuring that one out. Ha!

It turned out that I did infact have a sinus infection, and we're hoping that the pressure was so strong that it caused my eye to go all batshit crazy on me. Phew! Apparently the dizziness was due to the infection, too. I've never been so excited to have a sinus infection in all my life! I was so happy to have a "normal", simple and treatable illness for once. Although, it's the most painful one I've ever had- I even had the pain shooting through my teeth. One night the pain got so bad that I had to pop some codeine, and even then I still couldn't sleep. I'll blame Humira for that.

Thanks for making symptoms so much more dramatic than they really are Web MD.

BUT, apparently my pupils are markedly dilated and that's not normal. Which is why I'm now being referred onto an ophthalmologist, who will hopefully be able to work out which drug or drugs are causing my pupils to dilate. I've never paid attention to my pupils before, but from looking at old pictures taken before I started on a concoction of drugs, they were a normal size. I'm pretty sure they've been dilated for years, but didn't realise that was a problem.

Now that my attention has been brought to the problem, I've been checking them obsessively- and sometimes they change in size dramatically. Some mornings they'll be huge- just about the size of my Iris, and some mornings I'll wake up and they'll be really small. Give them a few hours and then they'll dilate again. It's freaky. Mumma Bear has seen the change too - I'm not going crazy! I'm pretty paranoid that people will think I've been indulging in illicit substance ingestion.


So, I've had my first infection on Humira. I guess it had to happen sooner or later. Its been a blast. A stubborn sinus infection which has required what has felt like an eternity, but was just two very long dragged out weeks on antibiotics until any sort of relief came. Oh the joy of having a suppressed immune system.

Finally. My headaches are now gone and the pressure behind my nose has disappeared. Hallelujah! Life without a horrible headache is amazing. Oh how I feel for those who have chronic headaches and migraines. It is most unpleasant and unbearable.

The pressure behind my right eye, however, has not disappeared. To top things off, I now have pressure behind both my eyes, but my right eye is far worse. Something is going on, and it's scaring me. So far, I haven't had any more visual or dizzy episodes again (knock on wood), so that's a positive. I've been trying to convince myself that my eyes are just strained and that it's just as simple as needing new prescription lenses (I'm shortsighted). But nothing is a simple as that these days, and something is telling me that it's more than that.

It's weird, some days my eyes are completely fine. A hundred percent normal. There's no pressure pain whatsoever. It's glorious. And then there are days like today when the pain just doesn't let up. It doesn't make sense and it is freaking me out not knowing what's going on.

So are the dilating pupils related to the pain, or are they a separate issue? Has the eye pain finally cropped up after years of eye damage from medication? I'm on that much medication that I don't know what's a side effect, what's not and what's dangerous anymore. It's freaking frustrating.

Hopefully I'll know tomorrow when I see an ophthalmologist why my pupils are so dilated, if there is any damage caused from the drugs, and why I'm getting this pain. If the pain is not associated with my eyes, then it's off for scans. Which I am so excited about (that was sarcasm).

Oh and to make these good times so much more fun, for the last four days and counting, I've been breaking out in rashes everywhere. An allergic reaction- the antibiotics I was prescribed interacted with the low dose chemo drug I'm on. Why yes, some weeks really suck.

So there you go, consider yourself medically updated.

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