If Winston Churchill had suffered from
migraines he doubtless would have said “I’m terribly sorry this monologue is so
long but I’ve had too many migraines recently to make it shorter”. He would have
then gone on to give a rousing speech about fighting migraines on the beaches,
on the streets, about never surrendering…
Actually, I think G.B Shaw originated the
quote I’ve mis-quoted about not having time to write a shorter letter but
anyway…
For various reasons my team of Doctors and
I decided it was time to put me back on a daily migraine preventative. As you
can see from my Tried & Tested page I have tried almost every preventative,
without much success, but tomorrow I start a series of injections on my
cervical spine (i.e. neck) that will, most likely, provoke yet more migraines.
So back-up is needed. The top choice: Topamax (Topiramate), an anticonvulsant,
epileptic medication used with relative success for some migraines.
One of the first things my Neurologist said
to me about Topamax was:
“Now, Victoria, one of the most serious
side effects of Topamax is weight loss.”
Weight loss? Weight loss! There is a drug
that could make me skinny and possibly help with my migraines and my bastard
Doctors have been keeping it from me for 13 years!!! It took every ounce of
will power I possess not to reply:
“I’ll buy every bottle you have right now!
Do you have some here, in your office? I want all of it!”
Instead, I took a deep breath, stroked my
chin and said, “Interesting, interesting, do continue.” But I wasn’t listening,
all I could think about was being skinny and migraine free (notice how it had
now become a cure?) And then an evil genius plan began to hatch at the back of
my mind. I could sell some of these miracle weight loss drugs on eBay! We all
know what crazed Hollywood Actresses will do to get skinny. Imagine what they
would pay for a drug that is known to cause weight loss in a quarter of its
users!* Oh this was going to be amazing. I was going to be supermodel skinny,
migraine free and rich! (In my defense, I had just come out of a 3 day mega
migraine so was a little light headed.)
And then my Neurologist rather rudely
interrupted my evil genius plotting by explaining the extent of weight loss in
some migraine patients. One young lady he had on the drug lost more than five
stone, which would be about half my body weight. A little excessive, even for
me. But I was not to be deterred. He talked about severe pins and needles
experienced by some patients, I waved this aside. My left arm and hand are numb
most of the time due to radiculopathy (nerve damage) so I assured him, I could
handle that. He went on to mention other possible scary side effects ranging
from glaucoma, blurred vision to kidney stones, mood swings and memory loss but
all I could think of was my ‘get skinny and rich plan’. How much should I
charge on eBay? But he persisted in emphasizing all the side effects,
especially the cognitive dysfunction and psychiatric ones. I really think he
was being over dramatic. But then he told me how one patient rang him up to say
she was having thoughts about killing her son. Ah.
But still I remained positive that I was
only going to suffer supermodel anorexia and none of the other possible reactions.
I think my Neurologist could see I was experiencing selective hearing so he
said,
“And this drug can interfere with the
contraceptive pill, so you don’t want to get pregnant!”
To which my ever-helpful Mother responded:
“She should be so lucky!”
That decided it. A prescription was written
and off I went. I did, however, begin to grow a little apprehensive when I
dropped off said prescription with my friendly Pharmacist and she said, “Oh God, Victoria, whatever you do
don’t read the list of side effects!”
She should not have said this. Obviously I
then spent the whole night on the internet and found several actual ‘hate’
sites dedicated to Topamax. I know even Vitamin C has a long list of side
effects, and I’ve been on nearly every other migraine preventative available,
but Topamax has a list of side effects as long as a loo roll! I couldn’t sleep
that night, convinced I would kill my parents in their sleep. If you’ve read
previous posts you’ll know that murderous tendencies run in my family!
Day
1.
Now the advice with Topamax is “go slow”. I was prescribed a pediatric 15mg
‘Sprinkle’ dose formulation. You can pull the capsule apart and ‘sprinkle’ as
appropriate, thus regulating your own dose and increasing whenever you feel ready
- depending on side effects (and obviously following your Doctor’s advice!). My
Neurologist also assured me that most of the side effects would wear off and
the scary ones, like going blind (I’m exaggerating for dramatic effect), would
be apparent very quickly. How
scary could anything with ‘sprinkle’ in the title really be?
So, I took the pills and the first week
went by without incident. I did not try, or have thoughts of, killing my
parents. I experienced slight pins and needles, felt a bit spaced out and
sleepy but nothing major. Nor, more importantly, did I lose any weight!
Disappointing.
Day
14.
On week two, the first bizarre side effect
started to take effect. I have a sneaking suspicion it was karma paying me back
for my evil genius get-rich-quick plan.
I am not going to get supermodel thin on
Topamax. I am not going to turn in Heidi Klum. I am, in fact, swelling like
Violet Beauregarde from Charlie And The Chocolate Factory! But not because I’m
hungry, oh no, but because I can’t stop drinking!!! (Water, that is, not Gin.)
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Oh god I've just realised we both have Copper Auburn hair and power bangs! |
Yes my friends, thirst is going to kill me.
I am drinking so much bloody water I will soon explode.
And I am not talking normal thirst. I am
talking, Jesus of Nazareth in the desert for 40 days and nights with no water
type thirst; dry raging throat, unquenchable thirst (it’s very handy that it’s
Lent right now.)
When the raging thirst first hit, on a
Sunday when these things always seem to happen to me, I obviously thought I was
dying of Kidney stones (a listed Topamax side effect which I have subsequently
learnt off by heart). I ran to Mum and, between lapping up water like a dog
from the two jugs of water I was holding, said:
“You have to call a Ambulance right now I’m
dying of Kidney stones!”
“Ok, Darling. What makes you think that?”
Mum calmly replied.
“There’s no time to waste explaining but”
{interlude to lap up more water} “I read about this girl on an internet hate
site also on Topamax who was rushed to ER with Kidney stones so let’s save time
and call the Ambulance now before my Kidneys kill me!”
Dad was called for a consultation.
Obviously he’s had Kidney stones, having had every medical ailment known to
man. He explained it actually takes some time for Kidney stones to develop, and
as I’d only been on the drugs for 2 weeks it was unlikely.
“Oh god you don’t understand” I screamed
“You don’t know about this drug and it’s power and do you have any idea how
guilty you’re going to feel when I die and you just stood by and did nothing
and do you know how irritating you are?!”
By now you might also have guessed the
second bizarre side effect I was suffering. Mild Rage.
In the end it turned out Dad was right, I
was not dying of Kidney stones. But the thirst was to such an extent that I
could do nothing else all day but lie in bed and drink. I felt sick with
thirst. It made me angry how thirsty I was. I tried sucking throat sweets, wet
flannels, no matter how much water I drank nothing helped. Then finally, at
about 8pm I realized that Ice Lollies, Calippos to be exact, were the only
things on planet earth that would quench this unquenchable thirst. So out my
devoted mother went into the cold night and came back… with soy fucking ice
cream. As the thirst had augmented, so had the rage.
She entered my room coyly, tentatively
holding out the soy ice cream in front of her, like a kind of shield. I might
have growled. She eventually persuaded me to try some, to see if it would help.
It tasted like cardboard, conversely making my mouth even drier! I wailed and moaned like a cow in labour.
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A cow in labour according to 'The Optimistic Rancher' Blog. |
Why did no one understand? Why was no one helping me? I threw the ice cream to
the floor in disgust. Mum finally had enough. She had been tending to me all
day.
“That soy ice cream cost seven pounds, it’s
the most expensive ice cream in London. Tesco Express are not selling
ice-lollies at the moment, they won’t stock Calippos until it’s spring so
you’ll just have to make do.”
“WHAT! Well drive into Hammersmith and get
some! And call the Chairman of Tesco and complain!”
Obviously, this didn’t happen. But I did burst into tears. How was I
ever going to be able to leave the house again? Mum suggested I could get one
of those backpacks marathon runners wear, with water packs and straws you can
have in your mouth at all times. That made me cry even more “That wont make me
look weird at a dinner party will it?!” I wailed.
But then thank god my creative genius
kicked in, I ran (or rather rolled like Violet Beauregarde) into the kitchen. I
swear I could hear the lake of water sloshing around inside me. Was I really
going to be the first person to die from water explosion? Anyway, once in the
kitchen I frantically poured orange juice into ice cube trays and sat on the
kitchen floor till they froze. This is how thirsty I was. Incidentally, I
looked again at the side effects of Topamax and sure enough “Increased thirst
and drinking abnormally large amounts of fluid” was listed. But I actually
think any possible symptom, such a 3rd toenail from the left turning
pink, would be on that loo roll of side effects. Anyway, when my mini cube
lollies were ready I sucked on them, incredibly pleased with myself, somehow
they seemed to help. Thirst finally abated, I proudly showed them to Dad.
“Look, look what I made Daddy! I should
sell these!”
“You’ve just frozen orange juice.”
“You never loved me why don’t you love me!”
Rage not quite abated.
So welcome to the world of trying out
preventative medications. Is it worth it? I do realize that of all the listed
side effects, I was pretty lucky. I also realize that selling drugs on eBay is
highly illegal and dangerous. I wasn’t really going to do it!
As a family we decided it would be best for
everyone’s personal safety not to up my dose until the rage and thirst had
calmed down, which they did. During this time I wasn’t even on a dose that
should have affected my migraines but I did notice they were slightly less
frequent. In the coming weeks I’ll let you know what happened when I gradually
increased the dose.
I’ll just tell you that my local Tesco
Express now stock Calippos! This has nothing, whatsoever, to do with my
stalking to the local manager.
*Refer to Page 33 of the
BASH guidelines.
Next: Topamax
Part II: Bizarre side effects continue as I up the dosage but is it working?
Also coming up:
Top Tips and Migraine Rituals.
Possible links
between Epilepsy and Migraine?
The National
Migraine Centre: Migraine Mecca!
Have you tried…?
Unhelpful helpfulness.
Legal Disclaimer
Topiramate is a really serious drug. I only decided to take it after careful consideration and consultation with my Doctors. The side effects I experienced are relatively rare but there are other side effects, some of which are much more serious. Everyone reacts differently to drugs. This article is not intended to be and should not be construed as being medical advice or a recommendation to take Topiramate or any other medicinal drug. Readers should always seek a professional medical opinion in light of their own symptoms and circumstances. For more information, book an appointment at The National Migraine Centre and talk to one of their specialist Doctors or refer to The Migraine Trust which has fact sheets online, and an information helpline.