To just tell people I'm epileptic (even though I'm not)

[dilemma456]

Message withdrawn

[edam]

Glad it's been useful and yes, being only five minutes away does make a home birth more sensible than a midwife-led unit 40 minutes in the other direction. Btw, I didn't have a seizure in labour, despite it being the most extreme physical experience I've ever had so hope that's reassuring!

[holytoast]

Edam - no, well there is a midwife led unit, which I would be happier with, bt its at least 40 mins away on bad roads, plus no public transport - and my husband doesn't drive (no medical reason - just never learnt and hates it every time he tried!)
I actually only live 5mins from the hospital, so home in a way would be closer to help than the midwife unit!
Am going to look into all the options - really useful reading this thread though, as many people seem to have had a similar experience to me, having only had intermittent seizures - but classed as epilepsy. I never really found anyone else that had anything similar - mine just began, then stopped a year later for no reason, and as I say, seem to occure rarely, but due to stress and pain. going to look into hypnobirthing possibly tailored to me to enable me to stay calm and possibly avoid having a seizure...if its possible! the responses here have been really useful though - thanks to the OP!

[sasamaxx]

No I don't think YABU at all

[edam]

Hi holy, don't think you are hijacking, really. I was also worried about having a seizure in labour as you just don't know how your body will react to extreme stress (and with sleep epilepsy, lack of sleep is a trigger so I worried about whether I'd have one of those long labours).

Not sure I'd have gone for a homebirth tbh but definitely wanted to avoid consultant-led hospital stuff. Had to argue my way onto the home-from-home unit but head of midwifery listened very carefully to all my points and said fine, unless things change, I'm happy to have you there.

Is there any compromise like that available near you?

[holytoast]

Thanks Edam - reasurring to hear you experience - started a thread in pregnancy and so far most people seem to think I am naive in wanting a homebirth. I am not on medication, was very briefly when they started but not for years now - we are talking 6 seizures in about 12 years, with the last being 6 -7 years ago - so medication just isn't necessary - the only worry I have (because day to day, I don't even think about the seizures, doesn't even occur to me) is that they might occur during labour due to pain, as it has in the past been a response my body has had to pain (once had one due to severe sunstroke, another time due to a fall). they arent exactly telling me I have to have a c section, but they have put on my notes consultant led hospital birth, when I don't want that, and also have mentioned that to avoid stress I could have a c section. I think a way of reducing stress and pain could be to use hypnobirthing, and to be in comfortable, relaxed surroundings - my home! but will just have to see how I get on though, and consider all options I suppose...
Again, really sorry for hijacking...will go now...

[edam]

Looks like it. If I'm ever on antibiotics or anything, no-one's every questioned 'sorry, can't drink, I'm taking medicines that react badly with alcohol'. (My anti-epileptic, Lamictal, is fine with alcohol.)

[Stripycat23]

I think I know some daft people.

[edam]

what a daft lot of remarks!

[Stripycat23]

[Wannabee - that's terrible. This isn't the dark ages - stupid old codger. An old bloke once asked me if he needs to stick sugar lumps in my mouth if I fit. Erm no, not unless you want my teeth to clamp down on your fingers while my jaw locks up!]

Sounds like you've handled the school gate pretty well now. I'd say use the epilepsy if you want to. If you've had a few fits, seems to me you're epileptic.

The problem I have is that alcohol does NOT get on with my medication. My liver cannot cope with both of them. I dread when people offer me a drink and I say no, the inevitable WHY??? (unless I have the car of course) can bring on:

"I don't trust people who don't drink"
"One can't hurt"
"of course you can, don't be silly"
"you're wierd"

or my personal favourite

"my friend has epilepsy and she can drink"

[edam]

Hi holy.

I had the consultant neurology team at Charing Cross Hospital and the obstetric team at St Thomas's co-ordinating. Did need to go in and talk to the head of midwifery re. getting the birth I wanted (in the home from home unit across the corridor from the ordinary labour unit) but that was fine.

Neurologists explained that seizures are more likely in pregnancy for the reasons you mention and because the concentration of medicine in your bloodstream goes down (because there is more blood in your system). So the risk of having a seizure goes up. But it's a balancing act because many anti-epileptics do carry a risk to the foetus. The one I'm on, Lamictal, is supposed to be the safest as it happens, but no-one can rule out any problems. Then again, having a seizure while pregnant also carries risks...

So I decided with the docs to wait and see what happened, rather than whack the dose up. I did have two seizures so adjusted the dose. ds was absolutely fine!

No-one every suggested C-sections or early induction or anything - no idea why you are coming under pressure. Maybe your experience of epilepsy is more severe than mine? If not, you really do need the obstetricians and midwives to liaise with the neurologists - there is generally no reason to whip the baby out early! Also may be worth contacting the British Epilepsy Association (think they are now called Epilepsy Action) for advice - am sure they could talk over your options and give you info to take back to the midwives/docs.

HTH

[holytoast]

I would agree, just say you have occasional seizures or epillepsy - no one is going to enquire lots unless they are very rude, or just very curious, and there isn't necessarily anything wrong with that, people are just interested.
I had several seizures around my late teens, which ceased around 7 years ago - have a driving licence now, and don't mind telling people, but just don't really need to, but only because it doesn't come up and the likelyhood of me having another one is very slim, or has been until now...
At the risk of hijacking this thread though, am now pregnant and becoming increasingly worried about them starting up again, as at the time they were always around times when run down, tired, and hormonal - hmm, just like now! if any of you who have given such good advice have any advice for me or thoughts about how I deal with the healthcare professionals who seem intent that seizures that long ago now mean I should have the baby whipped out through the sunroof, and not the homebirth I would like, I will be starting a thread in pregnancy...thank you, and sorry again for hijacking!

[edam]

wannabe at being accused of being possessed! Must be incredibly stressful being investigated by the DVLA. But I'm sure five years free means you are fine, IIRC? (I have sleep epilepsy so the rules are slightly different - think it's two years but actually have been seizure free for six.)

dilemma, to say you have epilepsy is NOT a lie. As several people have said, epilepsy is having seizures - i.e. not a one-off. Listen to us and stop beating yourself up!

[unfitmother]

Don't stress about it - if you have fits you do have epilepsy!

I have had fits because of a brain tumour so would describe myself as having epilepsy, not that it's anyone else's business!

[ObsidianBlackbirdMcNight]

Epilepsy is seizures though, no? My friend started getting odd random fits and brain weirdnesses and after all the MRI scans showed nothing, the consultant just said she has epilepsy, which is shorthand for 'unexplained seizures and brain weirdnesses' as far as she could tell.

Of course many people experience it far more seriously, but she isn't on any meds or anything, so I can't see how saying you have epilepsy would lead to awkward questions. Besides, you can legitimately make this face at people who carry on asking questions about a medical condition - it's beyond rude.

[GunpowderTreasonAndDragons]

I would go with the suggestion of "medical reasons" as it explains truthfully but doesn't invite further questions as it's clear you don't want to elaborate.

[dilemma456]

Message withdrawn

[wannabe10]

I have epilepsy and am five years free after having status when I was pregnant with my last child.
I told some friends the medical problems I have and someone helpfully rung the DVLA last year and I know am bing investigated which is very stressful.
I have had lots of different reactions to information and when having a seizure years ago was hit with a walking stick and accused of being possessed by the devil!!!!

[edam]

Six years here but the ones six years ago don't really count as it was when I was pregnant and kind of expected - had been free for a few years before then but volume of blood in your system changes so medication needs upping but given anti-epileptics can affect the foetus, decided to wait and see if it happened. (And thankfully ds was absolutely fine.)

I didn't tell anyone for years and years and years - in fact first time I mentioned it on here I was really nervous.

[UnquietDad]

Well, I don't publicise it, but I mention it if it's relevant. Five years free now!

[BalloonSlayer]

Trouble is, PrettyCandles, saying: "It's not something I care to talk about" can have the effect of making people think you have lost your licence, hence the need to explain.

[edam]

(Saggy, I think having colleagues tell a paramedic about epilepsy would be positively helpful - it lets them know the person has seizures. Although I didn't tell anyone at work for years as I was afraid they might think I wasn't up to scratch, or get a bit over-excited about the prospect of picking me up from the floor).

[edam]

yup, madame, it is. It's not a disease or a condition like arthritis which has a very clear cause (or two basic causes) and progression. It's a label for a symptom - recurrent seizures which can be caused by a whole variety of things, or often there is no clear cause identified, as in my case. When I was diagnosed, the consultant neurologist, an epilepsy specialist (at a tertiary centre so sees the most complex cases) said they diagnose epilepsy after three seizures. And epilepsy after brain damage is very common.

dilemma, presumably they aren't calling yours epilepsy because the drugs didn't work? Although there are a huge range of different classes of drugs, am slightly surprised they didn't try you on anything else. Suppose if you don't have too many seizures and it doesn't disrupt your life it's not worth messing around - the medicines do tend to make you a bit doolally when you are first on them before your brain adjusts.

UQD, gosh, I never knew we had that in common as well as Doctor Who! I've got a (provisional) driving licence now as I've been fit-free for years, which is jolly exciting, if slightly nerve-wracking. (Am crap at learning to drive though, sadly.)

[madamearcati]

I thouight epilepsy was an umbrella term for people who had seizures?

[elkiedee]

Say you have health reasons and you've been told it's not safe for you to drive because of them. You could say that you have seizures or that it's a bit like epilepsy but perhaps you don't need to.

dp has epilepsy and doesn't really get stigmatised as far as I can see. Apart from not driving and getting ill when he's very tired and every time he had to work a block of "waking nights" (fortunately he doesn't have to do that now), he lives a fairly normal life - he was unwell yesterday but it was a very long time since the last episode (years).

[nattiecake]

ps, surely if you do have seizures anyway, its easier to say you have epilepsy, in case you DID have a seizure...? most people react better when they are slightly more mentally prepared than if it was completely unforseen and a complete shock...?