Friday, 31 January 2014

Has Topamax made me go blind?! Part three.

High Street Optician. A rainy wednesday. 

Half way through my eye exam the lovely eye lady says:

"Oh yes, some cataract here."

EXCUSE ME WHAT THE BLEEP BLEEP I scream inside my head.

"Terribly sorry," I politely mutter "Did you just say cataracts?". Turns out she did say cataracts - in both bloody eyes. I stop listening to anything she says after this as I'm just so shocked. I'm not Ninety, you're not meant to get cataracts if you're not Ninety!! Eye lady was also surprised at me having such a condition at my (terribly youthful - ahem) age.

Luckily Mum happened to be in the local M&S next door. I go and find her.

"Mummy, I'm going to cry, I'm going blind and I have cataracts!" I say, very bravely, managing not quite to cry.

"Don't cry. I'm sure you're not going blind and cataracts is very easy to sort. Besides you can learn brail."

She didn't actually make the brail 'joke' until later in the day when I was crying. I was crying because a) I'm a slight drama queen and b) I'd had a crappy week and c) I was completely shocked that I had granny eyes and d) I knew, deep down, that my old friend Topamax was responsible.

Once again, this was karma paying me back. Topamax was not going to turn me into a slinky super model (thanks to it's alleged weight loss properties) who made mega bucks selling the stuff on ebay (thanks to everyone else in the world wanting to get hold of a weight loss drug), as I had so carefully planned. Instead,  I was going to go blind! Yes, the mild cataracts had, in my head, transformed in a eye eating disease that would ruin my life forever.

I decided, sensibly, to seek a second opinion. Apart from possibly getting a seeing eye dog the idea of having cataracts didn't sound very fun to me. So I went to a proper Optometrists and had my eyes tested with every new fangled gadget under the sun. It was almost fun, I had to press lots of buzzers when I saw lights flashing up in certain places. It was a bit like playing a video game. I was going to win!

I also convinced myself that the proper Optometrists would reveal that my eyes were perfect, it was all a silly mistake. I do have incredibly bad eye sight. If I take off my glasses the world is a big whirly fuzzy mess. So I had thought my increasing need to squint to see the subtitles on Borgen, was just the usual decline. But alas, no. I have something called Posterior Subcapsular Cataract - in both bloody eyes. But it's not very bad and, hopefully, with some new contact lenses, my eye sight will be back to normal and there will be no need for any laser/surgery options if the Cataracts doesn't spread. In short, I will not go blind. And I'm not allowed a seeing eye dog.

The proper Optometrists asked if I had taken steroids, as the type of Cataracts I have is usually associated with steroids, certain medications, and conditions such as diabetes etc. I then told her about the Topamax. She nodded in an 'oh yes, I know all about that' type fashion. She even mentioned another patient of hers who had had visual problems associated with Topamax. Two years ago, when I last had an eye exam, there was no Cataracts of any kind. Two years ago I wasn't on Topamax.

Every side effect under the sun can possibly be blamed on Topamax, but my Neurologists very carefully and clearly warned me about eye issues - mainly glaucoma and sudden worsening of vision.  Cataracts isn't usually a listed side effect  but I found it listed on this information packet.  It also just seems too much of a coincidence. One study shows that of 21, 362 patients on Topamax %0.65 developed cataracts. But this isn't a very large number. I searched around on patient chat rooms and have subsequently found out that others have also developed cataracts, even those who were on the drug for a relatively short time and a low dose.

I have, also, had small amounts of steroids over the last two years with all the nerve block injections, so maybe the two combined are what have given me granny eyes?

Despite my initial shock and dramatic despair - I still think I've been very lucky. I'm now off Topamax (simply because my Neurologists said it had done its work for me and it was time to wean off) not because of any issues with side effects. Compared to others my journey with this interesting drug was a walk in the park. You can read about how I fared in  'Topamax Part II' (which I haven't actually posted so you'll just have to wait!) I've now been off the drug for some months but side effects can continue. If you look at the comments on my first Topamax post you'll read stories from patients who, sadly, continued to suffer adverse side effects for many years. But we're all different and we all respond to these drugs in our own special way. For some, Topamax has been a life saver and there are those who simply couldn't stand being on it for more than a week. It's up to you to discuss the options carefully with your Doctor and do your own research.

I'd still take Topamax again as it did, in combination with other treatments, have a beneficial effect on my migraines which I think (just) outweighed the side effects, and even though my evil plan for fame and riches never came to fruition. So, in the meantime, I'll be keeping a close eye on my eyes.

I'd love to hear from anyone who suffered similar problems with Topamax? 
Coming one day soonish:
Topamax Trials and Tribulations: Part II (I'll put it up one day, I promise!) 

Useful Links: 

Tuesday, 21 January 2014

Migraineur Of The Month: Miss January!

I have, for you, the MOST fabulous and feisty migraineur to kick off the new year. The lovely Kayla is a relatively newbie (or nOOb as she likes to say) to life with migraines but by gum has she got a better handle on the condition and done more advocacy than most of us do after 14 years. Go Kayla! Having been in nursing school Kayla has a really interesting insight into the medical process and some great ideas for TV ads for migraine. Read on and enjoy! 

The fabulous Canadian Kayla

Can you remember & describe your first migraine?

I can remember very vividly the very first vicious migraine because it was the worst surprise of my life. My usual methods to deal with normal headaches was to take a Tylenol and fall asleep for nap, and then by the time I woke up I would be pain-free. So one day I begin to get a headache. Naturally, I take my Tylenol and my nap. However, instead of waking up pain-free, the pain had intensified to a blinding 10/10. Surprise! I couldn’t move, I was covering my ears, and I didn’t dare open my eyes because every single sensation would send waves of hot pain through my brain and down my neck and spine.

What followed is exactly what you would expect. A trip to the emergency room and crying. Lots and lots of crying. Imagine the face of someone giving birth, but you don’t get cute little offspring at the end.

Best migraine top tip anyone’s ever given you?

“Breathe.” – Mum.

Worst Trigger?

Dehydration, hands down. Even mild dehydration can trigger a migraine for me, so I am constantly carrying around a bottle of water. It seems to me that the attacks that are triggered by dehydration also seem to be the most painful and long lasting, and when I have to get an IV it ends up being really difficult for the RNs because the veins in my hands and arms become so tiny! It seriously took 4 nurses and 9 tries to get an IV in once. The next attempt was going to be in my foot. *shudder*

Favourite migraine comfort?

I call it my “blanket burrito”. I wrap myself up in my favourite blanket with my laptop, my phone, strategically placed heat and ice packs, my TENS unit, snacks, water, and my bag of meds. I’m like a bear; I can hibernate in there for days at a time if I have to.

What’s the worst assumption that’s been made about you and your migraines.

It really upsets me when people assume that my migraines can’t be that bad, so they suggest that they can be fixed with pseudoscience or just a glass of water and a nap*. I think what perpetuates this “it’s not that bad” idea in society is the commercials for the over-the-counter medication. Usually along the lines of a waitress who suddenly furrows her brow, then she takes the magic Advil/Excedrin “migraine” tablet and she’s back to waitressing with a smile plastered on her face in no time!

Just once I would like to see a more honest face of migraine disease on television. Someone who, despite an armada of over-the-counter and prescription medications, is left intermittently partially blind, completely overwhelmed by all of their senses being ramped up for days on end, so dehydrated from nausea and vomiting and in so much pain that they need to be taken to the hospital and be put on an IV. So weak and dizzy that they have to be pushed in a wheelchair to brain scans and blood tests, so the emergency doctor can see if they’re having a stroke, even though they’re only 23 years old.

Pleasant to watch? No. But then maybe when I say “I have chronic migraine” people will actually take a moment to listen and learn about this horrifying neurological disease rather than instantly dismissing it as just a bad common headache that can be fixed by a kale smoothie* or getting glasses*.

* Actual real life cure suggestions given to me. I wish I was joking.

What are you most proud of doing despite living with migraines?

Unmedicated, my migraines are very severe and caused me to leave nursing school and a job that I enjoyed. It was very turbulent for a while, but I am very fortunate to have found some medications that manage to keep the worst symptoms at bay, which has allowed me to achieve some pretty awesome things within the past 8 months:

·      Spent 2 months travelling through England, Scotland, Ireland, France and Italy and managed my migraines effectively on the go. (Only 22 days after diagnosis, was I crazy or stupid? Maybe both.)
·      Started chronic illness blogging on Tumblr ( ) and Wordpress ( ).
·      Got published in a magazine for youth and young adults with chronic illnesses called The Pillow Fort ( ).

The first one is a personal victory, and the last two I am proud of because I am able to help others who are in the same crummy situation as me. “We’re all in this together…” *cue fabulously corny High School Musical dance number*

If you could be the Prime Minister for a Year what would you do!?

It’s hard to get a lot done in a year in politics, so to be the most effective I would probably want to focus all my efforts on only one thing. I have always cared very deeply about equality and health care, even before I got sick. Ideally I would spend my year improving accessibility to health care. I don’t know if you’ve noticed, but Canada is big. Like, really big. Most of us do live in the cities where it is easy to see a specialist, but there are still a lot of people who don’t. The population with the greatest need for improvement to access to health care is the Indigenous population, who also disproportionately suffer from chronic illnesses, including migraines and other chronic pain diseases. It would take a long time to ask, listen to, and then meet the needs of each unique community, but it would really be worth it. No one should have to cope with a chronic pain disease, or any disease for that matter, without specialist care.

My name is Kayla, I live in Vancouver, Canada, and I’m a migraine n00b with 1 and ½ years under my belt. I’m also a 23 year old blogger, writer of amusing things, clinical secretary, and all around layabout. I try to make migraineurs laugh at , and I share how I manage my life of migraine in my own quirky way at You can follow me on twitter @doamigraineur if you wanna see more of whatever “this” is and to follow me on my eternal quest for a furbaby.

Kayla, thank you for kicking off the year with such a great piece! Everyone, check out her blogs and various sites. Kayla uses humour brilliantly to explore and explain the mysterious condition that is migraine. And her determination to beat it, and help others, is inspiring. 

Thursday, 16 January 2014

January Resolutions!

Happy 2014 one and all. Did everyone survive the festive season in style?

As usual, my main injuries/problems revolved around Christmas Tree instillation, decoration and removal. But I'll save that fascinating tale for another time.

So, what are your New Year Migraine Resolutions? Here are mine, in no particular order:

Become skinny
Learn French
Get new coat
Get new job
Get new man
Get new bra

And yes, I realise none of these have anything to do with migraine. But surely the purchase of a new coat, which I will be wearing when I speak fluent French, which will of course attract my ideal mate, can only be good for my overall health - which is beneficial to my migraine. Obvious really.

The fabulous Migraine Trust recently asked it's twitter followers what their migraine resolutions would be - their answers were far more sensible. They included:

  1. will try to cut out chocolate & cheese where I can. They tend to be my triggers.
  2. hoping a better diet along with fever few and regulated magnesium and potassium will help with my severe problems 👊
  3. To help my 13 y/o cope with & manage his better. Hard lessons at his age
  4. try & get more sleep/take more vitamins so I don't spend another day like tday :-(

I hope the above people don't mind me pasting their answers here - but they display an interesting array of ideas, problems, triggers and solutions.

I'm resolved to keep fighting the buggers, learn as much as I can about the condition, continue to develop a life that has nothing to do with migraines - and get a new coat. Let's go 2014!

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