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Original poster

Doc has referred me to neurology for a scan and EEG. I'm really worried. Come prop me up a bit.

64 replies

dragonbutter · 17/03/2009 15:35

I collapsed in the middle of the night (again .

Previously i've been told this is a vaso-vagal syncope (a faint) caused by having a poo during the night. In this case explosive diarrhoea (TMI!)

But because i lose consciousness for a little while and am rigid and possibly shaking while i'm unconscious, doc wants me to have a scan and EEG.

The worst part is when I came round i could hear DH crying. It's worse for him. But i stupidly apologise as soon as I come round [wtf?] like i'm doing it on purpose.

'oh i do apologise, i appear to have shit on the floor and made you think i was dying, terribly sorry about that ol' chap'

I'm so worried now, I can barely talk to DH and the kids. I want to curl up in a ball and cry. It's a beautiful day out there and i'm indoors wearing a cosy cardigan feeling horrid.

Come prop me up a bit and tell me what to expect from neurology.

OP posts:
bella29 · 17/03/2009 20:53

My ds had episodes just like you describe, complete with the loss of consciousness and twitching. We were referred and told it was reflex anoxic seizures (RAS) caused by vaso-vagal syndrome, i.e. the body reacts to a loss of oxygen to the brain caused by the very slow heart rate and you faint, then the blood naturally returns to the brain. DS grew out of it.

Please don't worry - your symptoms sound identical x

Original poster
dragonbutter · 17/03/2009 21:13

thankyou.

OP posts:
LackaDAISYcal · 17/03/2009 21:19

ooh you poor thing dragonbutter

do they think that the cramps and diahorrea are part of the problem, or that the pain etc from that is causing the fainting.

It's just the indigestion followed by cramps and pain like labour and diahorrea sounds very similar to what I have been having when passing gallstones. I threw up as well and although I didn't pass out with it, it certainly felt like I was going to.

Wishing for a good outcome for you.

Original poster
dragonbutter · 17/03/2009 23:48

i don't know what they think tbh.
originally i was told that the stomach cramps were causing a lack of blood to my brain causing the faint.

now they are wondering if the diarrhoea is caused by a loss of control due to a fit. so kind of the other way around.

i think. i don't know really.

the link from belgo was useful as the syncope (fainting) can appear like a fit because of the shaking, but isn't necessarily epilepsy.

OP posts:
bella29 · 18/03/2009 08:28

I was worried ds had epilepsy because of the shaking when he used to pass out, but I was told that was the reflex anoxic seizure, which I believe means a seizure purely brought on by a lack of oxygen, rather than one caused by epilepsy.

I'm not a doctor but ds's attacks were brought on by over excitement, so isn't it possible yours are brought on by over exertion on the loo?

Hope they get you seen soon and put your mind at rest. Not knowing is awful.

TimeForMe · 18/03/2009 09:52

DP also had an episode when the doctor was taking blood. He passed out and started to jerk/shake. The doctor told him he wasn't to drive until epilepsy had been ruled out. As he hates needles the stress of that could have caused it I suppose.

I hope you are feeling a bit more reassured today

Original poster
dragonbutter · 18/03/2009 19:11

i'm feeling a bit better today, especially as i'm not actually feeling unwell.

not sure i'm getting over excited on the loo though? but the stomach cramps i get are as strong as labour pains and also felt in my stomach, and back, that it might be the stress of that.

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flowerybeanbag · 18/03/2009 19:17

Sorry you're having a rough time. I have epilepsy, controlled by drugs and I drive and everything. I've had several EEGs in my time. Not painful. Not particularly pleasant, and seem to go on for ages, but fine.

You get electrodes stuck into your hair with nasty gel, and lots of wires fixed to them. You lie down and they read your brainwaves for a while. I don't know if they do this for everyone, but when I have one they also ask me to pant as if I'm really out of breath for a while, which is uncomfortable to do for any length of time, and also flash lights in my eyes. Being extremely out of breath and obviously flashing lights can be triggers for fits so obviously they are monitoring brain reaction during those things.

bella29 · 18/03/2009 19:44

I said over-exertion, not over-excitement on the loo!

Mind you, compared to all the nasty hair gel being on the loo might be a better propoaition...

Hope you're taking comfort from all these stories anyway

Original poster
dragonbutter · 18/03/2009 20:03

flowerybeanbag. it's good to get some idea of what will be happening. thanks.

bella29, sorry i forgot to add a . there's nothing exciting about explosive diarrhoea, but i know what you mean.

OP posts:
Original poster
dragonbutter · 19/03/2009 13:38

I'm even more worried today.
It's dawned on me that i've been complaining of a sore jaw or teeth in the morning like i've been clenching my teeth.
I put it down to stress.

Also a few weeks ago i woke in the night and felt like i was coming round from a faint. As i was asleep at the time, I thought i couldn't possibly have fainted and ignored it and went back to sleep.

i haven't told my doctor this yet.

this sounds more serious right?

i'm so worried, i've come home from work, i just couldn't concentrate.

OP posts:
noddyholder · 19/03/2009 13:45

Oh dragon you sound so worried .Teeth clenching is normal when you are stressed I have had this several times while waiting for hospital results.Can you get signed off from work while you get your head round this and get some rest?

Original poster
dragonbutter · 19/03/2009 14:10

part of me thinks that being at work will help distract me, but i was fairly absent minded at work this morning i'm not sure i am being much use there.

would feel weird to take time off work because i'm worried rather than actually ill.

i keep crying though. i'm just so frightened that this is much more serious than i've thought before.

OP posts:
shouldbeironing · 19/03/2009 14:10

Have you been given any idea when the scan and EEG will be - at our local hospital they have some sort of "2 weeks from referral" targets to meet - maybe you can call the hospital and ask if they have received the referral and what the target times are. I dont know if it would help to have an idea of when the tests might be.

My DD (epileptic) had an EEG and a scan recently. The EEG as others have described - lots of sticky things stuck on your head. But not painful or anything. The scan involved lying in one of those huge rather loud enclosed machines with ear plugs in - they are magnetic so no jewellery or anything allowed and you have to wear a hopsital gown - my DD was brilliant with all this but some people find it scary as it is sort of enclosed - you have to lie really still as well. But again it doesnt actually hurt.
Best wishes. Hope you feel better soon.

Original poster
dragonbutter · 19/03/2009 14:17

i've asked for a GP phone call this afternoon so i can tell him my concerns and ask how long i will have to wait.

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hatwoman · 19/03/2009 14:18

db - I strongly suspect you;ve done the right thing coming home from work. A few years ago I had some health issues involving tests etc. I went back to work when I felt physically ok - but hadn't had test results through. after a morning of people popping their heads round my office door saying it was nice to have me back, asking how I was etc, I walked into our PA's office and burst into tears. I told her what results I was waiting for (to see if I had ms - I have - but thankfully, so far, v. mild) and she just looked at me and said "I really don't think you should be at work while you're waiting for news like that". she was right. I was useless workwise - and it was useless for my stress levels. waiting for results is awful. Try to take some time for yourself. could you go swimming perhaps? or book yourself in for a massage? or do some vaguely theraputic house-sorting? I hope that doesn;t sound vacuous - these are only stupid little distractions - but they might distract you. You can't speed up the appointments and the results but waiting is awful - so do try to do something to fill the time (maybe ask dh to take a day off and the two of you could do something together?). take care.

hatwoman · 19/03/2009 14:20

speaking to the GP to get an idea re your appointments is a good idea too - best to know where you stand (and it might even speed them up a bit, despite what I said)

Original poster
dragonbutter · 19/03/2009 14:21

thanks hatwoman, i do feel like immersing my self in some serious spring cleaning or mosaicing.

but it could be weeks!

DH meant to be taking the kids to MIL's for 5 days next week. I've been so looking forward to the break, but DH thinks he shouldn't go now.

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Original poster
dragonbutter · 19/03/2009 18:15

ok, had a chat with a GP this afternoon. my own GP not available though but this one had done his homework and checked up on the referral letter.

blood tests have come back fine. he said that was reassuring, but i have no idea what they were looking for there.

he said the waiting list would be 6-8 weeks!

i can't go on feeling this stressed for 6-8 weeks!!!!!!

OP posts:
bella29 · 19/03/2009 21:26

Poor you - DB.

Did you tell the doctor how stressed out you are?

Original poster
dragonbutter · 19/03/2009 22:14

yes, i told him i was feeling really down. not sure there's much he can do though.

OP posts:
TimeForMe · 20/03/2009 10:06

Just a thought but if you go to A&E I wonder if you would get seen earlier.

I personally think 6-8 weeks is far too long, something like this needs sorting out sooner. Your GP is still allowing you to drive, what if you have a collapse whilst doing so? I wonder if he had noted epilepsy s a concern you would have been seen sooner?

My DP was told not to drive until he had had the all clear. As his job involves driving up and down the country he needed to be seen as soon as possible or he would have lost his job.

I hope you get sorted soon, it is a worrying time for you.

tiggerlovestobounce · 20/03/2009 10:16

Going to A+E to ask for an EEG wouldnt speed things up.
Have you tried phoning the EEG department and offering to take a cancellation - if you are able to attend the department at short notice that come sometimes make a difference.
6-8 weeks isnt too bad for an EEG though, if you lived where I do you would wait longer than that (not to say that 8 weeks isnt an awfully long time to have that hanging over you, but neurology services are often very stretched).

bella29 · 20/03/2009 12:49

dragonbutter - make sure you are telling your GP about all the episodes, even your suspected ones in your sleep.

If it were me, then the next time this happens (if it does ) I would get me to A&E and explain that it is all becoming more frequent/severe/worrying etc. Don't put on a brave face - this is really affecting you and you need to make sure the doctors know this.

Thinking of you x

Original poster
dragonbutter · 20/03/2009 18:14

Thankyou.

Had a good talk with my boss about this today.
I'm feeling a lot better...ie more confident that this is really just a severe fainting thing.
maybe that's how i have to think to get through the next 6 weeks. i can't fall in heap.
if it happens again though, i imagine i will be seen as an inpatient. or at least i will make sure of it.

for now, i'm just ticking along trying to get on with work.

thankyou, i will keep you all updated when something finally happens.

OP posts: