Category Archives: Medicine & Health

The Woman with the Electric Teeth

I have electric teeth. What this means in practice is that on the lower right-hand side of my mouth my teeth are ‘lit up’, galvanised, alive in a way that acts almost like a conductor.

It’s funny really, when you think about it, because I used to believe I was sensitive to electricity. Up until I was about thirty, I regularly electrocuted myself, albeit in a very minor way. I couldn’t touch escalator handrails (still can’t), shop counters, anything where a lot of metal/plastic/nylon carpet was combined with humming overhead lighting.

Younger still, I blew up lightbulbs at a truly alarming rate and regularly electrocuted my boyfriend when he was foolish enough to take my hand. We joked about it, but it was such a regular occurrence that I actually became fairly phobic about touching a lot of things and to this day I always put my forearm on an escalator handrail before I will touch it with my fingertips.

So it seems only right now that my mouth has actually come alive with electricity. I’ve become a living parody of my younger promise.

My little brother used to sleepwalk, and when I was left to baby-sit him I regularly used to hear him jump out his bed and run across the overhead floor. The only trouble was, when I went up to tell him off he would be fast asleep in his bed, not faking it but deeply asleep. No way could he have run across the floor, yet I’d heard distinct footfalls. What’s more, when I’d go out to the lower hall to yell up at him on these evenings, the light I’d put out would be back on again. I could have sworn blind that light was out, yet here it was, bright as a button, mocking me with its tungsten glow.

It was only years later I read about poltergeists and how young girls aged 11 – 14 from dysfunctional families often produced these phenomena, such as thumps and bumps, lights going on and off and, if they were very disturbed, actually moving objects.

Well, at least I wasn’t very disturbed; I could just turn lights on and off and make things go bump in the night. No Exorcist manifestations for me.

I lost this dubious ‘skill’ with time, just as the number of my electric shocks and exploding lightbulbs has dimmed with age, although it’s still me who blows up most of the lights in the house. When they’re going to go, it will be my fading electric current that will do for them.

I even stopped wearing synthetic fabrics in my thirties because the static made them unwearbale: riding up, clinging, giving me and everyone else near me shocks. I couldn’t take anything polyester off without lighting up like a Christmas tree. It hurt my teeth to walk under electric pylons, and I still find their ‘singing’ on wet days unnerving, like one of them is going to shoot power down to me, its soulmate.

So why then, given this banal little history of tidal electricity was I surprised when my teeth became fully electric?

I wasn’t.

Actually one of the strangest things about the electrification of my teeth is that other people with this disease – and yes, it is an actual disease – suffer the tortures of the damned trying to accept it. Not me. And trust me, this Zen flow isn’t normal for me.

I’m the woman who walked around with a crippling case of gallstones for a year and a half because I wouldn’t admit defeat and was determined – determined I tell you – to cure myself with the only drug available.

Diligently, every day, I worked at it: hypnosis, a punitive diet (I lost almost five stones in weight, although it’s more embarrassing that I had that much to lose than that I was that tenacious.) I was in acute pain all day, every day. The only break to the monotony was the odd attack, every week or so, that rendered me unable to move, eat or lift my arm above shoulder height. I lied to doctors about how sick I was, just so I could go on using this archaic and downright useless drug (Ursodeoxycholic acid, and don’t waste your time; it doesn’t work.). And at the end of it all, I failed, and had to lose the gallbladder anyway. It nearly killed me. Not medically – that was a breeze – but emotionally. I felt an absolute failure, like I’d let my poor body down; that’s how much I don’t accept things.

But my electric teeth? Oh, I cried, and I still do. I run into emotional walls, sometimes once a day, but cry, “Why me, Lord?” like all the other sufferers seem to do? Nope. Deny it’s happening, search everywhere for another reason, a better disease, a cause? Yes, maybe a little, but I go for an MRI next Tuesday, so I imagine that will be the end of that.

It’s common for no cause to be found on MRIs for Trigeminal Neuralgia – the real name for my electric teeth – so I may well join the many others who have been left abandoned, up the creek with neither boat nor paddle to get back to shore.

Will I be sad? Damn right. Crushed probably. Without a diagnosis of an artery or vein pressing on a nerve, a tumour or cyst, or MS (which is no better, because all you’ve gained is MS and Trigeminal Neuralgia) there is nowhere else left to go but down.

It’s a degenerative, incurable condition. This means they can’t fix it and it gets worse with age. Sometimes unmanageably worse. It’s known as ‘the suicide disease’ for a good reason – this is it. And I’m not a cheery soul to start off with.

It’s rare; they estimate only 1 person in every 100,000 people get it, and while it’s common for people to first think they have toothache when they get it, what is less common is to actually have it inside their mouth, like I have.

What this means in practice is I get electric shocks in my mouth. I get them randomly, whenever the Trigeminal Nerve feels anything that triggers it. In my case, so far, temperature change. What that means, in practice, is any variation in temperature is registered as an electric shock of pain. This isn’t like an electric shock; it is one, in the sense that the stimulation feels exactly the same. Doubtless there is no electricity running though me (but given my history, who knows?), but as far as my brain is concerned, there’s a hundred volts or so, right there, every time the wind blows.

This, in turn, means when I go outside I get shocked, when I come inside I get shocked, when the wind blows in my face I get shocked, when I stand over a chiller cabinet, or an air vent, or I yawn, or eat, or drink, or brush my teeth or shower (I admit, that’s an odd one, but hey, that’s the joy of this disease) I get shocked. In short, everything in life gives my mouth a burst of pain that brings strong men to their knees.

Fortunately, and I mean that, there are drugs for this. Not its own drugs – oh no. These drugs are for epileptics. Anti-convulsants. They dampen down/slow the nerve impulses (TN is thought of as hyper-excitable nerves) and thus stop the shock sensations.

After mistaking my condition for a dental problem (everybody does), and sensing something didn’t ring true in the dentist’s diagnosis, I went on the internet, that home of the barking and the life-saving, and found a disease that fitted what I had so well it was like it was made for me. Great. (That’s sarcasm, not joy.)

I went to the doctor’s, after two weeks of pain, a lot of confusion and anxiety, and a weight loss of ten pounds. And I’m not particularly overweight any more (I did learn from those gallstones, you know), so I couldn’t afford to lose ten pounds in two weeks.

I cried. I try to never cry with medical professionals. It puts you at a disadvantage. The doctor diagnosed my condition immediately, and came to the same conclusion as me (without any prompting), Trigeminal Neuralgia. Even then I wasn’t as crushed as I should have been, I was just so fucking relieved – medication. NIRVANA!

The drugs seemed to take an age to work, but eventually they did, and the shocks stopped. Just stopped. It felt like I’d died and gone to heaven. Who cared if I was so nauseous I couldn’t move, or that when I did move I fell over? Who cared that I had to go round shops hanging onto cabinets, leaning on something or someone for support at all times? So I looked drunk; was so stupid I couldn’t even remember the word for salt and had to go through a lexicon of every word that began with a ‘sol’ sound (I still do), I was saved. I’d seen the light. Western medicine had turned off my electric teeth.

Now, some months down the road, I’m still in pain. I have acute ‘sensitivity’ in my ‘hot zone’. I’ve had to put meds up and back down. I hallucinated at 800mg of Carbamazepine and had to live in a house infested with spiders, including a giant tarantula-esque thing that lived in the stencil above my bed (it’s a bird) that would come out the wallpaper at night. I saw oranges on park benches and sparrows in the fruit department at Asda-Walmart. I got so used to these I learned to tell what was real from what wasn’t all by myself, although I did have to ask occasionally.

And now here I am, haunting forums where all the crackpots hang out. People who sound like the world’s worst hypochondriacs. Poor sods who are either half-crazed with pain or medication or simply years of just not being believed – the misunderstood Atypical Trigeminal Neuralgia sufferers. They don’t have the dignity or medical recognition of Classic Trigeminal Neuralgia’s shocks but are instead tormented with almost constant pain; pain that no-one has any explanation for, or for which there is little help.

I’m glad I’m not one of them. My pain might be more ferocious, but I have meds that tame the beast – at least for now.

You never know, if all else fails, maybe there’s a life for me on the road as an old-time circus freak.

The Woman With the Electric Teeth (drumroll please…………..)

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An Unbearable Itchiness of Being

Seem to be unbearably sad right now and I have absolutely no idea why. I’ve only got three options to work with:

(1)This bloody awful grey (wet) weather. What kind of fucking summer is this? Every day it’s like waking up in winter, only warmer. I need sun.

(2) Pointlessness. I’ve quit so many things, and more due to go with the sequestration (bankruptcy) proceedings, that I’ve go nothing left. I’ve stopped writing and editing; given up future volumes of DANNY; we’re closing Poison Pixie and dissolving the limited company – what the hell’s left?

(3) Mould. Fungus. “Candida”. Lots of it, galloping about my body in a ferocious and unfriendly manner. About a week after I’d finished my course of kill-all-known-germs antibiotics “guaranteed” to eradicate all those pesky H. Pylori that caused my ulcer, I started to itch. Of course, I had to itch in all my most private places. And I mean all of them. But I also got chronic itching inside my ears, in my eyes and in random places like my shins and the soles of my feet. Itching, itching, itching.

It’s been weeks now but it hasn’t cleared up. Worse, about two weeks after those wonderful cure-all antibiotics, I got up one day and felt as if someone had thrown a switch in my head. Sugar. I wanted it. I needed it. NOW.

I don’t eat sugar. It’s bad for you. And I hadn’t had any since November last year. I held out and held out and then finally caved. My cravings were for the weirdest shit. Ice lollies with hundreds-and-thousands coatings, for example. What the fuck? I never eat ice lollies. Why would your body crave such a thing? I ate packets of 6 of them, by myself, in two days. But it didn’t help. It got worse and worse. More and more sugar. Now I was adding sore teeth and bloating to the mix. No fucking wonder.

So I stopped again. Of course, it’s a nightmare, because I’ve stopped, but the cravings haven’t. Worse, the itching’s got worse. Now I feel as if my bits have been rubbed with a cheese grater. I’m raw, sore and itchy. Oh, the wonders of modern medicine.

Of course, to add insult to injury, my ulcer hasn’t healed (yet). Whether this is because the H. Pylori were dug in so well the little fuckers survived their antibiotic nuking, I don’t know. It’s part of the wonder of modern ulcer treatments that they can’t retest you for six months after the treatment. And even after that, they still can’t be sure it’s not a false positive, since the effects of H. Pylori have been known to show up in the blood for years after successful treatment. The only way to know for sure is to take a drop of your shit and test that. And that has to be done in hospital. Oh, the joy. Sore itchy bits, shit samples. There is no dignity in being sick.

Of course, I should go to the doctors and plead for Nystatin tablets, pessaries, creams and shove ’em in all my orifices, but I so do not want to go and show my cunt to some strange woman who will want to stick chunks of savage plastic inside me, give me more burning drugs and then look at me askance when they don’t work.

All this cause my Dad slipped me some tongue when I was six.

Oh yeah, that’s right, didn’t you know? H. Pylori can be passed on. They don’t know how or why, but it is. I’ve lived with Max for hundreds of years. We had him tested (he proved negative). In fact, we had to fight to have him tested. The doctors told me repeatedly that they “don’t know how H. Pylori is passed on” and that, therefore, Max didn’t need tested.

I pointed out that my father had an ulcer and I’ve almost certainly had H. Pylori since I was around 11 – 13 because I can remember first getting symptoms (sensitivity to aspirin, acid indigestion, heartburn) around then.

Some researchers even suggest it’s an actual STD, possibly passed through vaginal intercourse. Wow, now there’s a cosy one for the False Memory Syndrome bunch. Imagine if they ever prove that one. You might have forgotten, but your fucking H. Pylori won’t.

But there’s a whole host of other possible infectants (not a real word, apparently), including childhood vomiting, and good old belching. My Dad obviously belched when he was slipping me some tongue. God, I love medicine – it opens up such interesting dysfunctional possibilities.

My GP’s also gave me a false negative after my blood tests. I was sure, when I finally cracked and went to see the doctors, that I had H. Pylori. It was just too coincidental that my dad had had an ulcer and now I had one, both ‘developed’ at roughly the same age. (You can have H. Pylori all your life and never develop symptoms. But if you do, you’ll get your ulcer around middle age.)

They took a whole host of blood tests (by a dour unhelpful nurse who “agreed” to see me after they cocked up my appointment and kept me waiting half an hour). I had waited a week for this appointment then I waited another ten days for my results. I phoned up to get them ahead of time (they write) and they said, “No, all your results are clear”.

I was both disappointed and relieved. I was disappointed because I knew I was now in trouble; endless appointments, and endoscopes, and hospital visits to see what was causing the ulcer. But I was relieved because it meant I didn’t have some lousy parasite burrowed so deep in my stomach wall even stomach acid couldn’t hurt it.

I have a complete revulsion for internal parasites. H. Pylori is a bacteria, of course, but if you see a picture of it, it looks like a leech, with these long tentacles in its head. It digs these into your intestine and lives there, cheerfully destroying your gut walls and causing the stomach acid to burn holes in your stomach lining – hence the ulcers.

H. Pylori belongs to poor people, overcrowding, insanitary conditions. I may possibly have caught it, along with my dad (and maybe the rest of my family) in Czechoslovakia. When we went there the country was undeveloped and the drinking water wasn’t safe. On one of our earliest visits my mother caught “dysentery”, which I’ve now wondered if it was in fact H. Pylori infection. Her “dysentery” was acute and she was very sick, as in doctors and bed rest. For those regulars of this column, you’ll remember my mother doesn’t do “sick”. I wonder if maybe she was the unfortunate culprit since “gastric upset” is what you will see if you catch H. Pylori. The sad thing is, think of how many people must get it and not know, thinking they’ve just got a “bug” (oh, you bet you have, and you’ll know it when you hit forty too, my friend), or a touch of food poisoning.

So maybe my mum’s to blame, and her and my brother are walking around with H. Pylori too, only they’re luckily non-symptomatic. So, if you’re reading this, Andrew – GET TESTED.

But to get back to the point. About a week after I got my phone results I got a letter – yes, the letter – and it said, “Your tests have proved positive for H. Pylori”.

I felt like the world had sunk right through me. Instead of being relieved, as you might imagine, I felt furious. Trembling, destroyed furious. I wanted to lash out and break stuff. I wanted to scream and rant and rave. I wanted to cry and wail. I felt violated. No kidding. I did. It embarrasses me now, but I can still feel the sheer outrage. I remember lying in the bath that morning, crying, my brain just keeping repeating, “I feel violated”. Some filthy, dirty thing my father had given me. Because I can’t believe, no matter how plausible and TV detective forensics the Czechoslovakia story is, that I got it from any other source. He did it. All these years, lurking inside me, all the pain and distress it had caused me. I’d spent my whole life unable to deal with the most simple things like period pains because I couldn’t use the necessary drugs. Years of monthly pain, taking useless Paracetamol when Ibuprofen worked, but killed my gut – and it was his fault. That fucking dirty, filthy lousy scum-bag had put this disease in me. He’d invaded me.

If anyone had told me that I would have this reaction I would never, ever have believed it. I was completely unprepared. I felt about two years old. It’s taken me this long to be able to write about it.

I actually did feel as if I was carrying a sexually transmitted disease, and I couldn’t tell anyone about it, because it was so bloody absurd. I then had to face a long difficult (to me, feeling fragile and stupid – what a combo) fight with my doctors to allow me to have Max tested. I argued that I did not want to repeat this antibiotic medication if he reinfected me. It is incredibly strong. Believe me, you haven’t taken antibiotics till you’ve experienced the joy of ulcer medication. They give you the strongest dose of amoxicillin you can get, double it, and then make you take it twice a day. But that’s not enough, they add another antibiotic on top. That one makes you nauseous, causes pins and needles in your lips (and arm, in my case), makes your mouth taste filthy and, in my case, caused me to lose my sense of taste entirely, develop dizzy spells and feel generally lousy.

And then afterwards, I still have ulcer pain (only slight now) and, of course, THE FUCKING ITCHING

The itching’s “normal”, of course. It’s because the antibiotics have killed all the intestinal flora, you see. In fact, they’ve killed all your fucking flora everywhere. The only thing they haven’t killed is the fucking H. Pylori. I’m hoping that’s not so, but how will I know? Time, I suppose. I’m so good at “time”.

But you can see my dilemma. Or maybe you can’t. I felt invaded by the discovery (the long-avoided acknowledgement) of the Pylori. To then have to go to my – let’s face it, less than brilliant – doctors and let them poke about in my cunt. I don’t think so. Could I explain this?

Yes, of course. I could just look tragic, proffer a trembling lower lip, twist my hands in my lap and look away while mumbling, “My Dad abused me, you see… I don’t want an internal exam…” fading off into silence. Play the wounded little girl card.

DON’T WANT TO. DON’T WANT TO! Can’t face it. Can’t explain it. Can come in here and angrily tell strangers, not expecting any understanding at all. In fact, I’m probably horrifying or confusing more people than I’m recruiting right now, but that’s it. I can do this. It’s possible. Go to the doctor and let her poke about? Not possible. Explain why? Not possible. Know why? I don’t want to. Why do I have to explain? It’s my body. And I don’t want you or any other fucker in there, with your ergonomic fucking speculums, or whatever they’re called, and your patronising interference and your “interventions” (word of the week).

Out. Rouse!

So I will soldier on, eating yogurt, applying tea tree cream, taking (useless but expensive) probiotics, feeling like a small wounded child every time I go into a shop where I’m “not allowed” to buy the sugar I so badly crave, sleeping badly and worse, waking up every two hours to pee cause it burns so bad, until some day my body will maybe cut me a break and start getting better. Then, of course, my ulcer will flare up again, unrepentant H. Pylori laughing at me all the way to my next course of killer antibiotics and then back to the itching….

So… I don’t know why I feel this unbearable heaviness of being, but since we’re on the subject, thanks, Dad. It’s been great.