Thursday, 29 March 2012

Stuff Healthy People Say to Sick People Video

Oh I wish I'd made this video. But I also wish I'd written Harry Potter so...

This is inspired by the "Sh*t People Say" videos that are going viral on You Tube at the moment. I've had pretty much everything said in this video to my face... apart from the 'you look so skinny'. See previous post for explanation.

Most healthy people mean well so I don't wish to cause offence, merely spread mirth. But I think anyone with a long term, episodic chronic illness such as Lime Disease, ME, Epilepsy, Lupus and of course Migraine, will be able to relate to this.

And now I'm off to work on my own musical migraine version of this video. Good Day.

Thursday, 22 March 2012

Getting Rich & Skinny off Migraine Medication: Topamax Part I.

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!

But, being a migraine pro I looked over my trusted reference books ("Conquering Headaches" and "Coping with Headaches and Migraines") and recommended sites (listed top right). For me, this did seem like a sensible option. And, let’s not forget, I would be skinny and rich.

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.)

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. 

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.

Tuesday, 20 March 2012

Migraine Associated Dizziness

I just like watching some Americans talk about medical conditions, they smile constantly and have nice white teeth and explain things simply. This is actually quite a nice (albeit very, very basic) introduction to Migraine Associated Dizziness. The nice lady is right, it would be very hard "to do the gardening" when you're having a vertigo attack, let alone drive! But The Mayo Clinic is a highly respected Migraine Clinic. For another view on this subject, and how to tell if you're not having a stroke (always useful) go to The Migraine Trust' FAQ's page here. For some Migraine sufferers the symptoms can be surprisingly similar, not that I want to alarm anyone....

This girl I know used to have such severe vertigo attacks that she had to have an inner ear operation, which left her bed ridden for about 6 months because the Doctors thought she had leaking spinal fluid in her inner ear... Oh if only they had watched this lovely video they would have realised it was more likely Migraine Associated Dizziness, or even Basilar Migraine... But she's not bitter...oh no...

The full story is actually quite funny, maybe she'll share some time.

Friday, 9 March 2012

The Curious Incident of the Fire in the Night (Sleep & Migraine)

The cause of this week's migraines: the very real possibility that my Mother is trying to kill my Father.

It happened last Sunday evening, when these things always happen. Mum ‘accidentally’ left a pan of olive oil on the hob. We were all minding our own Gin and Tonics when a strange smell sifted through the flat. Before you could say Tanqueray Ten the kitchen was filled with noxious plumes of billowing black smoke. Being the man of the house my Dad raced into the kitchen to take the pan off the hob before it caught fire, but he forgot to hold his breath, so coughed, which meant he inhaled the noxious smoke. Fatal mistake.

A little history about my Dad – he is a bionic man. He’s had pneumonia 8 times in 18 months, he has a folded lung from Asbestos exposure in the Royal Navy, in 2008 he had part of a lung removed, he’s had 15 general anesthetics, there is scarcely a part of his body that hasn’t been replaced. Six months ago he had an operation on his stomach, he’s just had skin cancer removed from his face, and this is the man, the one recovering from pneumonia, who inhaled the smoke. Uh oh. Did you know that what usually kills people in fires isn’t the flames but the smoke?  But we all thought nothing of it. Dad gave us a lecture on fire safety, opened every single window and door to fumigate the flat and Mum continued to cook the traditional Sunday Roast. Though, and this is the big clue, while she was stirring the gravy she looked at Dad and said nonchalantly, “Darling, when did you say your life insurance was up?” Do I need more proof that she’s up to something???

Anyway, next morning it became apparent that Dad had suffered pretty serious smoke damage to his lungs and sinus. We whisked him off to his lung specialist who considered admitting him to hospital. Dad came home, however, inhaling steroids, on all sorts on drugs and with lungs that seemed to rattle with each breath and with the worst cough you ever heard. Mum ‘claimed’ to feel terribly guilty. I banned her from the kitchen as my suspicions grew.

But what does all this have to do with migraines? I’m just about to get to that. So, my Agatha Christie obsessed brain was already working overtime. I felt a shadow of one of my less usual right-sided pounding migraines, which I hate, so took a cocktail of drugs and hoped that a good nights sleep would prevent the migraine from kicking in and from having to take any more Triptans. Taking too many Triptans (acute migraine medicine) can, conversely, often lead to migraines and give you what is called Medication Over Use Headache. In essence they actually give you a migraine if you take too many. It’s not fair I know.

Anyway, I was in a beautifully deep sleep when suddenly I was awoken by the sound of Dad violently coughing up blood. I then heard Mum cry, “Call Victoria!” In my over active Writer’s imagination this meant my poor Dad was coughing up pints of blood and the “Call Victoria!” was my now remorseful mother realizing she had gone too far and that I was required to call the ambulance, that was urgently needed to save my Dad’s life. Had she stabbed him? In one swift movement that surprised even myself (honestly, it was like one of those slow motion sequences out of Mission Impossible) I leapt out of bed, grabbed my phone, turned on the lights, pulled on my glasses and my pink fluffy dressing gown (just like Tom Cruise) and raced into my parents' bedroom. My fingers had already started to dial 999.

But what I found was not a room splattered in blood and lungs, but my Dad sitting comfortably on the edge of the bed, coughing yes, and my Mum sitting next to him tenderly patting his back. It turns out she had in fact said,  “Can’t you go and cough in the bathroom so you don’t wake up Victoria”. A Mother’s love knows no bounds. I think Dad had told her to piss off. But there had been no mention of ambulances or anything. No blood.

But, the second I had done my Mission Impossible leap out of bed move, it felt as if someone had punched me in the right side of head. I’ve never had a migraine onset quite as fast and quite as violent. I guess it was a combination of being woken so suddenly, and jumping up so violently  (it has nothing, whatsoever, to do with having a completely overactive, hysterical imagination that will win me Oscars one day!) If I had had an uninterrupted nights sleep the two days of right-sided migraine would not have developed.

As it was, I stood in my parents bedroom, realized that no one was dying, and the massive right sided pounding took hold and I fell onto the bed next to Dad who resumed his hacking cough. I explained to Mum what I’d thought had occurred. She did feel genuinely bad and spent the rest of the night nursing both me and Dad. So the moral is two-fold: do not leave heating olive oil unattended and, if you get migraines, keep to a regular sleep pattern!

As to whether Mum is trying to kill Dad, she has subsequently discovered that his life insurance lapsed when he turned 75 (two years ago) so I suspect mysterious fires will miraculously cease. But I shall be keeping a close eye on her…
My parents, once again in the kitchen. I think the look on Mum's face says it all...
Additional note on Sleep and Migraine and a link to a useful Radio Interview by Pain Concern:
Mere anxiety had not been my migraine trigger this week and you would be guilty of Migrainism* for making that assumption (for it often takes a lot more than simply being ‘anxious’ to trigger a migraine) though one can be forgiven for being nervous about potential murder. Interrupted sleep caused this week’s spiral of migraines. Disturbed sleep patterns are a well-known cause of migraine. Too much sleep, too little sleep; it’s a minefield. Office workers often get migraines at the weekend when they have a lie-in. If you listen to the following radio interview by Pain Concern you will hear the Medical Director (who wears a Bow Tie) of the National Migraine Centre talking about this phenomenon, as well as a sufferer explain the role sleep plays in his migraines. (P.S this is also a really great general over-view on migraines with some handy tips, listen to it!) This month's edition of the Migraine Trusts magazine ‘Migraine News’ also has an interesting article about sleep and migraine.

Talking of loving Mums, this radio interview also features a lovely American Mother who regularly gets three-day migraines.  She has two small children and they’ve worked out a system where the kids make scrapbooks and take photos of what they’re doing during the week so they can re-live the events she’s missed when her migraines have gone. This kind of brought tears to my eyes. I think this woman, whoever she is, is truly amazing; so humble and uncomplaining. I also think that the level of pain and disruption to her life is unacceptable. I wish I could help her, I wish someone could help her. Migraines should not be allowed to cause this much disruption! End of rant.

*Migrainism or being a Migrainist is when you treat someone differently because they suffer from migraine.

Next time: Top Tips and My Migraine Rituals

Thursday, 1 March 2012

Sex and Migraines

The Daily Mail website has done it again... another classic about migraines. I shall let it speak for itself. But I will just add that if you have over 15 migraines a month, thus feel like you're being constantly stabbed, and are probably vomiting most days, it's not really surprising that you don't feel like getting jiggy with it? Cut the migraines and I suspect sales of Durex will go up. My mother reads this blog so I can't possibly comment further.

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