Please explain thè difference between epilepsy and fainting

[ash6605]

A bit of background, sorry if I ramble but have just gone through a scary experience and am still shaking......DH has always been "a fainter" if he's unwell or nervous he passes out. He's out for minutes, takes a long time to bring him round and then he just sleeps it off. These episodes have got worse as thè years have gone by, he had a circumcision about 8yr ago and kept fainting in hosp after the op. Dr who witnessed it reffered him for more testing saying that in her opinion it was a convulsion/fit he was having. Testing cane back negative of epilepsy, brain scan clear.

Wind forward a couple of years and it happened while he was driving on a motorway with me and dcs in car. If it weren't for thè fact it was late at night and I was quick thinking then I don't think we wouldn't survived it, I had to swerve into the hard shoulder, ring an ambulance, police escort to hosp......anyway dr then reffered him for another brain scan, ECG again, all clear.

A few months back he had a vasectomy, cue a phone call from the clinic saying that they hadn't been aware of DH's history of epilepsy but they were admitting him to hospital as hed had a really violent siezure at thè end of his procedure.

Doctors say they have done every test possible, and that they can only diagnose him as having (sp) vagovasil syncope which from what I understand is basically fainting episodes. They had him on the tilt table and said that he is one of the rate few egos blood sugar, heart rate AND bp drop when he's "fainting" which is why it takes so long to come round.

Why then have my dc and I just witnessed the most horrific of convulsions from him? My screams woke the children up :( it happened after he vomited (we have all had a bit of a tummy bug) rapid eye flapping,violent shaking, holding of breath then coming round with an almighty groan. How can that be a faint? How can medics who've witnessed this and said it looks like epilepsy be wrong? I feel like one day he just isn't going to survive one of these attacks. They are so terrifying for my children to witness. I don't mean to play epilepsy down but at least if it was that there'd be some medication, something to treat it with.

Please advice on what I do now, is there anything I can do, do I push for more testing or just accept that this is going to have to be put up with?

[Kundry]

A really deep faint can look exactly like a seizure - when you have deeply lost consciousness you can shake just like a seizure, wet yourself, bite your tongue etc.

Would it help you to go with your DH to his next appointment, or make an appointment with your GP, to ask your questions about exactly why it isn't epilepsy - from what you describe it seems like his doctors are very certain of the diagnosis but haven't managed to communicate this to you as well as you need.

[Pictureperfect]

Hi, I was reffered to an epilepsy clinic after 2 seizures (I also used to pass out, other times would collapse, twitch and not be able to respond but could hear what people were saying). The dr at the clinic told my Mum if it happened again to try and record it on a camera phone as it would be really helpful.
I would really push to see a neurologist or epilepsy/fit clinic. I can't imagine how scary watching must of been.
Do you know the charity STARS, they are fab and can give you advice

[PenelopePipPop]

It is a bit of a weird clinical history for epilepsy. Your DH would have to have started having infrequent generalised seizures in adulthood which are only triggered by serious illness and medical procedures (the kind that place stress on the body and might trigger a faint). Usually adult-onset epilepsy starts with focal seizures which slowly increase in severity until the person suffers generalised seizures and classic triggers are sleep deprivation and stress (which obviously go hand in hand). Unless there is a prior history of focal seizures you have not mentioned it seems atypical.

That does not mean he does not have a serious medical problem. He obviously does. But you will probably get more sense out of a cardiology referral than neurology. If cardiology think they cannot help because the cause is more likely to be epileptic they can always refer him over to neurology.

The looking like epilepsy business is a red herring. Epileptic seizures can look like pretty much anything, so misdiagnosis even by neurologists is surprisingly common. In fact when people have seizures which cannot be controlled with meds and get referred to a tertiary referral centres about a third turn out not to have epilepsy at all.

[ProudNLoud]

Fainting......not sure why? Speak to GP for referal regarding
Vasovagal syncope..............often misdiagnosed as epilepsy...............
TILT TABLE TEST .............. is the definitive test for vasovagal synccope also known as Reflex Anoxic Syndrome........Check out this helpful website which also explains LONG QT which may be a reason for faints...........
www.STARS.org.uk
STARS have lots of useful information. Hope this helps some posts here.

[Emmielu]

Don't wait for it to happen again. Call an ambulance every time. You're not sure what it is and its better safe than sorry. I have epilepsy and always tell people to try and time my seizures. If it's after 2 mins call an ambulance. If its one after another call a ambulance. If recovery time is longer than 4mins call an ambulance.

It is scary really scary for the both of you but you do need to make sure he has more tests done as well. It's gotta be something.

[myBOYSareBONKERS]

I do the "convulsions" when I have an attack. There is a lack of blood and so oxygen to the brain (and so lying down is the best position) and the body is shaking to speed up the blood flow in order to get it to the brain quicker.

[myBOYSareBONKERS]

I have this problem to but I don't have a pacemaker as I am lucky enough to know what triggers mine.

I always carry a drink with me, never get over hungry and always sit down if possible. My concern for you is the lack of warning and driving. If he did have an accident I doubt he would be covered by insurance.

He must get a cardiology referral so they can do the tilt table, 24 hrs ECG and insert a reveal device.

[Valdeeves]

Sorry I posted twice as my first one didn't show up!

[Valdeeves]

I have vasa Vagal syncope with reflex anoxic seizures and have a pacemaker - it can also be controlled with blood pressure meds. What region are you in as that can really affect treatment?
Go on the STARS website (Syncope Trust And Reflex Anoxic Seisures) it will help you.
The one thing I'll say is - the car incident is unusual to have a fit sitting down? (Unless there's a big trigger involved)
I live a normal life, have two children and with my pacemaker have had no Seisures for 11 years.

[Valdeeves]

I have Vasa Vagal Syncope with reflex anxious seizures. It's a genetic condition and I've had it all my life. My family went round the houses and I was diagnosed with epilepsy but my mother being a savvy nurse knew it wasn't and did not medicate me. Epilepsy medication was quite hard going 25 years ago - no idea what it's like now. I was diagnosed as an adult when I had a huge seizure that left me unable to speak after a travel injection. A doctor walked in and it just happened that his good friend at medical school ran the syncope unit.
I got a pacemaker - eleven years of no seizures!
The STARS link posted will tell you everything you need to know and provide support. It also recommends GP's as some regions are better than others. Where are you?
The other thing is this - not all of us can be treated with a pacemaker - I think it's not a high percentage. Some people rely on drug therapy to keep the blood pressure raised which really helps.

[desertgirl]

I officially have epilepsy, but it didn't show on any of the tests - EEG was not quite normal but not epileptic either - I understood the diagnosis was based on 'more than one seizure with no other apparent cause'. Anyway all of mine were about 7 years ago, but they still won't let me come off the drugs unless I agree to give up driving for a while :(

[ChristmasSpiritEndorphins]

He needs to see a Neurologist.

[CabbageLeaves]

NICE (National Institute of Clininical Excellence) guidelines say that epilepsy should be investigated by a neurologist soon

That investigations should involve MRI, EEG and eye witness accounts...ECG and bloods.

He should be seen by a neurologist.

[FundusCrispyPancake]

I faint and have convulsions. People who witness them are convinced it is epilepsy but neurologists say no, it is vaso vagal attack.

Your DH has them more often than me though, and as he faints while driving he should really think about giving up his licence for his own and other's safety.

I hope he gets a proper diagnosis and treatment if he can. Good luck.

[MoaningMingeWhimpersAgain]

I have witnessed a patient having a faint/vasovagal episode where they shook quite a lot. But this sounds quite out of the ordinary, and if he has had a near miss while driving I would certainly push for further investigations. Especially an EEG.

[ash6605]

No he hasn't had a neurology referral, from what I remember he was just tested on a general ward, no specialists involved.

[careergirl]

I have epilepsy (my EEG was abnormal)
There could be other causes beyond epilepsy but at a bit of a loss as to what. Has he had a neurological referral?

[callow]

I have had a few vasovagal episodes in my life.

The last was the worst. I felt faint went to sit down and next thing I am lying on the floor. I had a fit and was incontinent. I don't think the fit lasted a long time, but I had bitten my tongue. I was taken to A&E (I was working in a hospital at the time anyway). I had an ECG but nothing was found.

That was in 2009 and I haven't had another since. It was just the embarrassment. Every time I go to that particular ward I think of it.

I hope you find the cause.

[TigerFeet]

OP I had to call an ambulance out to dh this morning (diabetic hypo) and because they didn't have to cart him off to hospital we were left some paperwork with some advice on the back. There's a bit about convulsions, if the patient has a fit that is unusual for them you should ring 999. If it happens again I'd do exactly that.

Good luck, I hope they get to the bottom of it, sounds extremely scary.

[CabbageLeaves]

You say ECG.... which is a test on the heart where they place electrodes on the chest. He needs an EEG where small pads are placed into the hair in lots of places.

That looks for unusual electical activity in the brain which occurs in epilepsy. However sometimes it's normal unless he happens to be having an 'event' during the test. Often it shows changes regardless

[ash6605]

Oh and no he has never been reffered to a cardiogist that I'm aware of.

[ash6605]

Thanks so much for replies. I'm still in shock tbh, last night was the worst ever attack he's had. It happened again a couple of hours after I first posted. In between that I had ds(2) throwing up everywhere with a funny bug! Just trying to answer some of your questions but on my phone so sorry if I miss any.

Tests he's had so far have been MRI scan, brain scan, ECG, and the dye into his veins to check for blockages. Last test was after the vasectomy incident and that was tilt testing which is when they diagnosed vagocasil syncope. They then discharged him and told him to "avoid triggers" but the triggers so far have been sickness bugs, operations and once during a tattoo(which never got finished off as it was not worth going through another attack for) so clearly to me it's a pain thing which is unavoidable.

Last night his attack was triggered by vomiting but with 3 children it's very difficult to avoid bugs and sickness! DH and I have been together 14yr and this is probably about the 15th time this has happened so average once yearly so not regular but they're getting worse each time.

[CabbageLeaves]

Faints can look like fits and vice versa.

Epilepsy cannot be excluded by a normal EEG or a normal MRI.

Diagnosis is normally from a combination of eye witnesses reports & test results. The fact they haven't diagnosed epilepsy suggests to me they have found evidence for another cause.

So they could treat 'epilepsy' but it would still continue because its something else.... Go back to Drs. Whatever it is you deserve to have a treatment plan. If he passes out again today call 999

[VisualiseAHorse]

I have fits/faints similar to this. I have something called Respitory Anouxis- Sydrome (excuse spelling!).

Mine can't be treated with drugs, but don't happen that often, maybe once a year. Happened a lot more when I was about 2-3 years old and again when I was going through puberty. My heart-rate and BP drops wildly, and a good sleep afterwards is always great.

I would get it checked out, really push for more testing. If it is putting his life in danger, you really need to get doctors to listen.

[YouCanBe]

Have a look at www.stars.org.uk/

Ad I think there has been some limited evidence that taking iron can decrease attacks? That might be worth a try.