Helen Purves All you need to know about Helen Purves. And, indeed, much more.

26Mar/1217

It’s Epilepsy Awareness Day: Be aware of my Monster Munch obsession

Monster Munch. No, really.

Today (March 26th) is Epilepsy Awareness Day.  So are you aware of epilepsy?  Probably.  It's unlikely you're aware of mine, though, and for years I wasn't either.  I have simple and complex partial temporal lobe epilepsy: it's non-convulsive, meaning I don't do any of that falling-down shaky stuff that makes old people get itchy with spoons (don't do that, by the way.  No spoons.  Spoons break teeth. Here's what you should really do if someone's having a convulsive epileptic seizure).  In fact, I haven't even seen the frothing-at-the-mouth thing people tend to go on about.  I have the type of epilepsy they reckon Joan of Arc had - the type people have tended to interpret as religious visions.  They're not, of course.  But I wasn't diagnosed until I was 22, which meant that - because of not being aware of epilepsy - I had two options available to me.

Option 1: I was chosen by some higher power and should begin interpreting my out-of-body experiences (starting with strong feelings of deja vu, passing into visions and a wave of emotions, and then onto feeling like lightly toasted death for an hour or so) as visitations by God.

I was raised as a Christian (both Anglican and Catholic, but that's another story), but the idea that I, Helen Nina Elizabeth Purves, of Louth (Lincolnshire) had been hand-picked by Almighty God in order to relate His Message to the masses seemed far-fetched even to an extremely imaginative pre-teen like me.  As a result I decided to become an atheist, which leads me to my only other option at the time.

Option 2: I was insane, and should never tell anyone about what I was experiencing for fear they would shut me up in a lunatic asylum.  This, regrettably, was the option I went for.  I suspect that if I'd been gullible/cynical enough to plump for Option 1 I'd be significantly better off by now.  The market for human God-conduits is still pretty lucrative by all accounts.

As I result I hung on to my visions, deja-vus and heavy downers for years, terrified by the idea I'd be found out and end up being institutionalised.  Unfortunately this was a genuine option for non-convulsive epileptics right up until the end of the last century (in some countries, epileptic people were not even permitted to marry), and many older people are still suffering from years of invasive treatment and padded cells.  Like me, doctors and psychologists were not always fully aware of epilepsy.  I was counselled for depression, but even then I was too terrified to tell my therapists the real reason for my heavy downers: that I was sticking my head into another dimension.

Eventually, though, I chose a moment to cross a line.  At 22, after handing in in my 20,000 word dissertation and radio documentary to Nottingham Trent for assessment in the knowledge I was almost certainly guaranteed to get a good mark for my Masters in Radio Journalism, I decided I'd achieved enough in my life that I'd have good times to reflect upon when in my padded cell.  I took myself off to mHelen Purves cutting her crazy Epilepsy Cakey doctors, wrists ready-moisturised, to get myself cuffed and hauled away.  I genuinely believed I would be taken straight to an institution in a straitjacket.

Of course I wasn't, because if I had been it's extremely unlikely I'd be writing this.  Luckily for me Nottingham is the best place to be for people with epilepsy (the hospital there actually developed the MRI scanner): my doctor immediately referred me to Queens Medical Centre where I was and still am seen by my fantastic neuro Dr O'Donoghue.  I went through the tests within the space of a month, started medication almost immediately and my epilepsy awareness went through the roof.

For example, did you know that St. Valentine is actually the patron saint of epilepsy? February used to be real downer for me before I knew that (I'm chronically and notorious single).  This year I even baked and iced an enormous cake, and moaned on about epilepsy to everyone who came and ate it.  Epilepsy: a brilliant excuse for cake.  I even dyed the icing purple (the colour used by epilepsy charities), put Joan of Arc's flames up the sides and included oodles of buttercream and popping candy for the ultimate crazy epileptic sugar high.

 

To be perfectly honest, it sucks having epilepsy - it really does, and in so many ways that I could write an article a week for a year and still not cover it.  However, it can also be quite funny.  I have dozens of stories about things I have said or done when in the grip of complex partial seizures: during these I remain able to walk, talk and use my mobile phone, albeit extremely erratically, and have a tendency to go shopping.  Once it was 34 pints of milk, another time one of every colour and brand of washing up liquid in Tesco (aside from yellow - I would never buy yellow washing up liquid, even under the grip of an epileptic seizure).  Recently I have had a tendency to veer towards pickled onion Monster Munch - the image at the top is a photo I took during my last complex partial.  The accompanying text message, sent to my mate Agnes Guano (he of The Downstairs Lounge), read "Kj vghhhrdftgxffgrwffgg monst ker munches dghvtggf ets etted".

I hope you're more aware of epilepsy now.  Probably not: but if you see a tall girl with purple hair and glasses bulk-buying Monster Munch in Tesco whilst mumbling about tramps (example text message: "Tramp sit touch hit bite smell") please do make sure I don't walk in front of traffic.  Ta muchly.

Be Sociable, Share!
Comments (17) Trackbacks (2)
  1. Thabks for sharing that. I can’t imagine what you first 22 years of confusion and fright must have been like. My wife has epilepsy (full blown seizures and frothing at the mouth) and didn’t get diagnosed until she was 4 (despite 3 fits before then), since when the disease has got much worse. It stinks as an illness.

  2. Andy, thanks for sharing – I’m so grateful I don’t get tonic clinic seizures. It’s the luck of the draw, and I obviously got lucky.

    It must be awful to suffer from full-blown seizures, and it’s great to hear from someone so aware and supportive of someone with a condition/whatever-it-is like mine. It can be hard enough to find people fully accepting of and happy dealing with my type of epilepsy, never mind convulsive seizures.

  3. Crikey, I’d forgotten about the deja-vu. Thats probably ironic or something. Haven’t had an actual seizure in 20 years, though its still there, waiting. It ended up determining my life in a way – either as a restriction or a reaction against it. Even using a computer monitor is a victory after it being forbidden as too dangerous for years.

  4. I’ve just realised your doctor’s name is Dr. OD. That’s kind of brilliant.

  5. I’ve had complex partial epilepsy from I was 8 years old, now 18 its developed as I have and changed over the years and I’ve done some rather embarassing things during seizures. Which is why I occasionally appreciate the memory loss that follows. The least embarassing being shouting ‘PELP’, to humming the bridal chorus (I didnt believe at first till I got feedback from Teachers and friends) and the most strangelatching onto strangers and telling them I love them . I know how you feel :). I currently wear a medical aid bracelet and carry a first aid for epilepsy handout in my purse, complex partial underlined.

  6. Helen,
    Thank you for sharing your story. i have been an Eplipeltic since I was in the 8th grade. My parents tok me to many doctors to find what I had, they found a very good doctor. I had all the tests & worst test I had when I was a teenager was the Spinal tap. All I remember was screaming & out. The doctors were testing the fluid in my brain to see if anything was abnormal. I do agree with many of the comments, one has to live on medication for the rest of their lives. My doctor now is very good, I have found out one of my meds took over my red cells, so now I have Lukepina, plus Vertigo. I must say some days are very challening at my job which is just a small one.

    I was also married, that did not work, I ended up a battered lady & lost a still born child. Yet, I have a lovely daughter who now has a BA, & 2 Master Degrees. I really want to go back to school & make something of myself.
    Have Peace in my life which matters to me alot.

    I must share something with you. I was in a coffee shop & I passed out, spilling the coffee, everything all over me. I was rushed to the hospital, I was ok after I came to which took about 1 hour or more. I never wanted to go back to that coffee shop. My dear Father said to me one day, “You cannot be afraid, nor let these episodes bother you” I just looked at him as if he was nuts. He went with me to the coffee shop, we sat down, I covered my face, the owner walked over and said “Are you alright?” All I could say was I was very embarrased. She said
    she some form of disability, & that is why she owns her own shop. She treated my father & I & understood.
    I sympathize with you, I meet with a group who have Epilepsy & one lady talks about how she knocks down cans of coffee, things she likes, & is so embarrsed, and does say the same things you do. Only it was Mary- Blueberry.
    She said when it was all over she thouhgt she was going bananas, knew she was not.
    I find it much easier to talk on the phone, type on the computer, I do not have a cell phone so I dont text.
    I do not have a car or a DL either, I wish I did, would be so nice to go places, do things by my self instead of public transit.

    Well, Thank you so much for letting me type to you. This is a hidden disability, which there is no cure for.

    Take care of yourself

    Thank you

    Susan

  7. Hello!
    I just thought I’d let you know I have the exact same kind of epilepsy. I was diagnosed at 10, and always had grand mal seizures where I’m unconscious. Since 17, my seizures have turned int I me lying on the ground in the office at work shouting about tartan spiders, telling my colleagues they have big bellies and much worse! Hang on in there!

    Much love, a fellow nutter x

  8. Thank you all so much for sharing your stories. I’m very pleased to see that some of you came here from my BBC News article – I’m very pleased to have had the opportunity to raise awareness of my (our!) condition. I’d like to think it’s a mini triumph for all of us.

    I’ve never met anyone with the same/similar type of epilepsy as me and it’s absolutely fascinating to hear your stories – thank you very, very much indeed for sharing.

    Helen

  9. Oh, and in case you’ve not come here from BBC News, here’s the article! http://www.bbc.co.uk/news/blogs-ouch-22847975

  10. Helen,

    Thanks for a touching and honest and very funny article about a common condition about which far too many people are woefully ignorant! I’m a professor of maths from the US; I also have epilepsy, but the more familiar sort with convulsive tonic-clonic seizures, fortunately mostly at night when I’m lying down already.

    I’ve often thought that you folks with the CPs get all the fun – why can’t I have Dostoevsky’s religious visions, or even your stories of washing up liquid, pints of milk, and Monster Munch? More seriously, though, epilepsy in any form sucks. You’re not the only person I’ve met who had enormous pain on the way to a diagnosis of temporal lobe CPs. Have you read Karen Armstrong’s autobiographical work, “The Spiral Staircase”, about her years of being diagnosed as having spiritual problems or psychosis before finally coming under the care of a neurologist who made what would seem to be the obvious diagnosis? It’s very much worth one’s time. Eve LaPlante’s “Seized” is also worthwhile for any readers wanting to know more about temporal lobe epilepsy.

    Good job emerging from a lot of years of what sounds like awful fear into a place of self-understanding and openness and good humour. May you continue on that path!

    You mention never having seen anyone have a TC. I’ve only once seen one – a student in a computer lab at my school who by chance ended up tended by me and by a colleague who has CPs. She was eventually sent off to E&A to get her shoulder, which she had dislocated as she hit the floor, fixed. A few months back, though, I spent an evening on Youtube watching other people have TCs in order better to understand my own condition. This was quite a sobering experience. You mean, I sound like that? You mean, my wife has to watch her husband go through that? It added hugely to my sense of gratitude to her, and to my conviction that she has by far the harder end of this condition. After all, I’m not around for the worst part.

    Anyway, thanks again; brilliant article and blog.

    Tim M.

  11. I enjoyed reading your post. I have TLE (temporal lobe epilepsy) and have non-convulsive seizures as well. I don’t have the complex seizures with the erratic behavior, but I have severe dizzy spells, nausea and odd sensations. I have triggers that cause them such as high contrasting film images and the stereotypical flashing lights, but they cause intense synesthesia (smells of cat pee, burning rubber or baking bread). Sometimes I get “Alice in wonderland” seizures where my hands and feet feel like they are shrinking and growing or that when I’m walking that my feet aren’t quite reaching the ground. It’s all very disorienting and hard to make people understand that it is still epilepsy, and it can still be dangerous even if they can’t see it.

  12. Yep, I agree. Epilepsy sucks. It’s funny you should write that Nottingham is the best place to be if you have epilepsy. I thought the best place to be is where I am: Montreal! Wilder Penfield, a brilliant neurologist, taught at McGill and founded the Montreal Neurological Institute.
    I have an extremely rare form of epilepsy: musicogenic epilepsy. I react usually to singing, but not every time I hear it. I get these ‘déjà rêvé’ auras to warn me and then I have an absence seizure where I just stand there chewing for a few seconds. Then I think I have something you have. I can’t remember the technical terms (my memory has definitely gone downhill since the epilepsy started at 24) but I am out of it for a few more minutes afterwards. I have no idea what I did but I know I must be able to walk because I remember having an aura on the way to one particular shop, I had my seizure and I must have continued walking because when I cam around I was in the wrong shop but it was across the road from the one I wanted to go to. Now whether I waited for the green light or jay-walked, I don’t know, but I do know I made it! Since my son was born, I also fall down with my seizures. That’s not so much fun. The worst thing I could think of would be to have a seizure while holding the baby, but my hubby came up with worse: what if I am walking down one of Montreal’s steep hills and let go of the buggy. SO the baby and I didn’t get out much and when we did it was on pretty flat terrain.
    Sorry, I also tend to ramble a bit since the epilepsy. At least it had the good manners to wait until after I was married to show up (last night of our honeymoon I had my first and last grand map and was completely unaware of it.) My poor husband was extremely anxious but we only had a 13 hour drive before he could get me home.
    My epilepsy is not controlled with medication and they don’t really know where the seizures are coming from in the brain. There are no abnormalities that show up on MRI or fMRI scans. I take meds anyway because if I didn’t I apparently would be having more seizures. Whatever. I won’t ever be able to drive again…or fly a plane or go scuba diving but this doesn’T bother me. What bothers me is I can’T go shopping alone unless it’s a quick trip to get some milk. If I have to try clothes on or shop for an extended period of time I need someone with me in case I look like I’m going to fall. Only one place I have ever been to has turned the music off for me. Restaurants won’t, shops won’t and people driving past me with their music blaring won’t.
    So yes, it SUCKS to have epilepsy. But it is funny a times – I really enjoy your blog.

  13. Great Blog & BBC article/comments.
    I can truly relate to the gobbledegook message! I was typing away at work once when the dreaded condition struck for a few minutes. All I could manage was nonsense.
    I recently suffer from an itchy spotty scalp & wondered if that was related (or if its my 50+ hormones).
    I’m always happy to try new medication & I may suggest Keppra & Tegretol to my specialist when I see him next as Topiramate (despite increase) isn’t successful.
    I had a few febrile convulsions as a child, then nothing until about 8 years ago when I suddenly had a series of full blown attacks. Since then random non-convulsive attacks only. I’ve had EEGs & even tests for migraine; & consultants are not even sure mine is even Epilepsy, although treating it as such.
    I suffered a mini last night – I knew a few seconds beforehand it was coming but can’t communicate to warn anyone – lucky its only a few minutes & now the signs are recognised.
    I feel very hot & they are usually immediately pre-slumber, or when I’m very stressed or lacking in sleep.
    (My hubby has remained seizure-free on epilim for over 30 years).
    We both pay extra for travel insurance due to declaring epilepsy, & my hubby can of course drive (I have the offending bus pass!).
    Really interesting blog & article ?

  14. Wow. Thanks for writing this. I have a grandaughter who has developed epilepsy around the age of 3, although there were odd things happening for her even as a baby.
    So great you keep your sense of humour.

  15. I read your article on the Epilepsy site then came here. Both are hysterical, which may not be exactly what you intended; but as a nurse and fellow sufferer with complex partial, I see the humor. I was diagnosed at the end of 2008. You would think being a nurse I would understand better, but epilepsy was not a subject that came up very often. Most of the seizures I dealt with were grand mals in the ER after trauma.
    The worst experience I had was having a seizure in the orthopedic doctor’s office. The nurse came at me with the CO2 spray to numb my shoulder. My vision was blurred by a white cloud then the doctor jabbed in the needle. He was reassuring me that it would still hurt some. I told him it didn’t hurt, just ‘felt weird’. I remember repeating that phrase several times before the room went black. I heard talking every time a small rectangular light came on, but I did not know that I was talking. The lights moved around and soon I heard a little purple imp down in the lower left corner of the darkness tell me “You need to quit talking.” I came out of the seizure momentarily. Both the nurse and the doctor were on the other side of the room so I knew I missed some time. I listened to him talk, but was not able to concentrate. I watched them march out of the room with stiff arms and high kicking steps. He had given me a slip for therapy, but when I showed up they told me it was cancelled. I guess what I said must have been bad because he dropped me as a patient. What was funny – the check-out clerk asked me if I was okay. She noticed I wasn’t right when the professionals missed it completely. I think I lied and told her I was tired which was true, but I didn’t want to tell her I had a seizure because I had no way home unless I drove myself.
    My post-ictal (epileptic hangover – I love that) experiences have varied: most of the time I feel the room is evil and have to get out; once, when I had a seizure at a restaurant, I felt surrounded by love and concern, but after that brief feeling I was ice cold, like there was not a drop of warmth in my entire body yet the room temperature was comfortable. After every seizure I become extremely tired and need a nap.
    I loved reading everyone else’s comments. It’s so good we can see the humor in such an ugly disorder, and, best of all, to know we’re not alone.

  16. I’ve just read your article on the BBC website – absolutely brilliant. I had a seizure in my sleep and it woke me up as I rolled out of bed and so I opened my eyes in mid-air. I only had time to think “what the” before I hit the floor.

    Writing nonsense is another good one. I once had a seizure at night, went downstairs and wrote a message saying “I’ve had a seizure so I won’t be going to work tomorrow”. Or at least that’s what I *thought* it said. Upon waking up the next day, it actually said “control level pass control control room” – it was making a reference to a computer game I was playing earlier that evening.

    I can’t say sentences when I come round from a seizure but I can think them and yes, the epileptic hangover always follows it. I remember trying to ask my parents to get some painkillers and being able to think the words “could you get me some painkillers please?” but only being able to say “umm….errr…uhh…uhhh” is SO frustrating.

    I had a brain lesion removed in 2002 (a cavernoma to be precise) and I’m now on 18 tablets a day, which is keeping my epilepsy in check. All the best to you Helen, and everyone who has posted something on this site.

  17. Reading your content is big pleasure for me, it deserves to go viral,
    you need some initial traffic only. If you want to know how to get it search for:
    blackhatworren’s strategies


Leave a comment

Get Adobe Flash player