Yet more un helpful, non specific doctors comment - Headway

Headway

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Yet more un helpful, non specific doctors comment

sospan profile image
20 Replies

One of the symptoms I have is that if I sit down during the day, I can suddenly shut down. I don't faint or start yawning and fall asleep - I can be holding something in my had a cup or a laptop and it will make no difference, I can switch off and then come to a few minutes later. It always happens when I am sat down but never, ever when I am driving.

A few months ago I put a post on here about a comment the sleep doctor put on a report something like "you should not drive if there is any chance you may fall asleep". When I resplied to that to the doctor he responded with no more than the same words rearranged in a different order. But wouldn't state if I am safe or not safe to drive.

I met both a Psychologist and a NeuroPsych this week and both independently raised an eye brow about driving whilst I had this shutting down symptom. I was asked "do you think you are ok to drive". I responded that I thought I was ok and then as them if they though I was ok to drive? I was expecting a straightforward NO! but what I got was non specific replies from both of them.

However, I know that if I was unfortuneatly involved in an accident then whe questioned the Doctors would say that they told me not to drive. What was more annoying was that neither could (or be prepared to)

suggest any monitoring to track down why I shut down randomly.

So now even though I have retaken my driving test, had four years of incident free driving post injury, I am being put into a position of giving up my licence for an indefinite period without specific medical advice.

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sospan profile image
sospan
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20 Replies

exactly the same thing has happened to my husband. He has driven for 28 years post BI and the doctors suddenly decided that maybe he shouldn't do so. Like you they wouldn't commit themselves, passing the buck .... he needed a test to prove his driving was OK. Meantime, his licence went back to DVLA and he almost had a breakdown. He took a test, passed with flying colours but the doctor would still not write a positive report to the DVLA just stating the facts with no conclusion. He, too, has these 'switch off' times but he is always focused when driving. As you say, if there was an accident what would happen? I don't know the answer either....

sospan profile image
sospan in reply to

Thats the problem there was that sad incident in Scotland at Christmas a few years ago where the bin lorry crashed into the crowd. I couldn't live with myself if I was responsible for something like that.

But at the same time feel very confident in my driving and alert levels.

Living where I am and with my mobility issues without my ability to drive I would effectively be housebound and have no chance of getting back to work.

gabimou profile image
gabimou

Have you actually seen a Neurologist????

I have had an EEG and diagnosed with petit mal seizures/partial seizures and I'm now on Levetiracetam the generic tablet Keppra it might be worth visiting a Neurologist.

Ok I'm not a Dr or anything but this is my experience where I can just switch off for seconds more than minutes.

Good luck

Mandy:)

sospan profile image
sospan in reply togabimou

Yep seen three or four Neurologists over the last 4 years all as part of a legal process, they all do the basic grip test, walk on the spot and say there is no neurological issue

The last one said that sometimes people have moments like that after a head injury and nothing much can be done .....

paxo05 profile image
paxo05

I waa reading this post and it struck a chord. I have to agree with Mandy get it checked out.

What you describe sounds a bit like my epilepsy. The only differance is I was unaware I had closed in until afterwards. I felt tired and sort of out of it.

It took a while to dignose ....maybe because I wouldn't accept anyrhing ws happening.

I am pleased to say medication has controlled my episodes so much that I am back driving.

Athlough I sometimes feel they are back ....but thats just me being a bloke and being conveniently deaf and zoned out when my wife is telling me something.

Hope you get it sorted.

Pax.

sospan profile image
sospan in reply topaxo05

The strange thing for me is that it only happens when sat down, there are no specific triggers. The only thing odd happens is that my forehead is icey cold when I come to

RogerCMerriman profile image
RogerCMerriman in reply tosospan

Does sound awfully like something epileptic in nature, I take it this is involuntary? If tired or sometimes just because I twitch some times fairly vigorously it's almost always when I sit down to relax.

paxo05 profile image
paxo05 in reply tosospan

Get it checked. They may be able to control them.

Pax

randomphantoms profile image
randomphantoms

Hi Sospan

I wanted to reply in a certain way but I've read the answers and I feel very different.

It could be a type of epilepsy but I think it's more likely to be as Roger says . when you sit down to rest or relax that's what your brain expects. If you do something else your brain takes over and decides it's just not playing.

When it happens to me I know that it's because I've been doing too much or concentrating too hard for too long. My brain takes an area,throws a massive manhole cover over it. Puts a huge metal bar across that and padlocks it. Then it sort of pulls it's toungs and says I told you REST.

About the driving. I guess it doesn't happen then because that part of your brain that deals with driving hasn't been affected.

If you volunteer the information to the DVLA there is a chance that they may take your licence away but I think it's more likely that they would refer you for an assessment.

Hope you get some peace of mind soon.

Love n hugs

Xoxo

sospan profile image
sospan in reply torandomphantoms

I have been reassessed as being fit to drive but as one of the consultants said this week, if he sends his report to the DVLA they will tear up my license

Gaia_rising profile image
Gaia_rising

Urgh. What a vile situation to be in. It does sound a lot like 'absence epilepsy', but if the neurologists have found nothing functionally indicative of epilepsy, I don't suppose it can be?

I had a long discussion with my neuro-psych, (Before he discharged me, because I'm an impossible know-it-all, and was finishing his sentences for him.) in my terms, I've 'forgotten how to simple'. I can make flawless high-end decisions on complex cases at work, I can remember protocols and procedures, phone-numbers, and which child needs which medication, and where it is, but I frequently end up microwaving cups of tea, or wondering why the hell I've brought a ladle into the bathroom. It's taken me half an hour to get dressed some mornings, because I'll sit there with one sock on wondering what garment goes on next. More often than not, I'll get out of the bath with the conditioner still in my hair, or the soap still on my face and then end up throwing a tantrum because I have to get back in the bath with CARPET FLUFF on my feet...

It's the different levels of alertness, isn't it? When our minds are processing something else, like entering a roundabout, or running to a child who is having a convulsive seizure, calculating whether the four minute deadline has passed, it doesn't happen.

Theoretically, it could be argued that you're not 'safe to drive', because there's no evidence that you won't, at some future point, experience an episode at the wheel. There's no evidence that you ever have, though. The evidence is, that while you're sitting, and NOT driving, the episodes occur, there has been no documented loss of consciousness, no drop-from-standing, no faints, no falling from the chair you're seated in, and there has been NO evidence of it ever happening while driving. There's the 'subconscious' driving, that everyone seems to do, where you arrive at your destination, but don't remember the journey, because it's near-autonomous, and you don't have to 'think' about it.

Messy. I suppose that the only conclusive answer would be for you to be rigged to monitors over a period including the seated episodes, and periods of driving, to provide verifiable evidence that your brain behaves differently in the two scenarios? That would evidence a lower probability of an absence occurring whilst driving, but couldn't be stated to prove it was impossible?

I'm going around in circles- I didn't drive before my haemorrhage, so haven't had to fight this particular battle.

sospan profile image
sospan in reply toGaia_rising

Interestin the double levels of cognitive ability, I have the same facets complex things not a problem, remebering hum drum things a bit hit and miss. I can load up the dishwasher / washing machine without a problem but forget to switch it on. I can remember medical appointments but forget which shift my son is working - oh the joys of a head injury............

Gaia_rising profile image
Gaia_rising in reply tosospan

Weird, isn't it?

I've just been reading one of the PIP-threads, and I know for a fact that my application was declined because I was in 'crisis' mode at the assessment, and the assessor just couldn't grasp that I WOULD crash-out after such a sustained period of hyper-vigilance. I can hold it together in the moment, but then I can't read my own handwriting, and my typing is full of errors when it comes to the write-up, meaning I end up doing it again the following day... massive adaptations, but I APPEAR functional, I just end up doing a hell of a lot of things twice, and drinking a lot of microwaved tea.

I tried explaining to him that having a brain injury is a bit like being stuck in a caravan, in the rain, with an impulsive toddler, and an exhausted grandparent, and being the child, and the pensioner at the same time, physically and mentally draining. He'd already made his decision, based on the fact that I'd managed to get to the assessment centre, despite the map appearing to have been drawn by a partially-sighted chimp, with my shoes on the right feet, and that I didn't try to bite him, or eat his post-it notes...

So, so much about brain functioning that's still not fully understood, and still more that's not widely understood. I'm sorry that I can only share your frustration, and not offer anything in the way of concrete help.

sospan profile image
sospan in reply toGaia_rising

How do you do on the NeuroPsych tests - the trail finding, sequence tests, remembering parts of a story?

When I do mine the competitive, highly focused side of me comes out and I do really welly up to a point, then I can get stuck on something. Recently flew through the trail finding test (join the dots) for numbers then letters. The when it came to doing the combined numbers and letters test, i got stuck and the test timed out.

Gaia_rising profile image
Gaia_rising in reply tosospan

I didn't have any testing- my first appointment was just prior to my second round of surgery, so it was all a bit "Tell me how you're doing, and what you're struggling with, but we won't really know until after the surgery..." The second/final appointment was him noting that I was making some changes to the way I reacted/behaved, and essentially telling me I was doing OK.

It's a quagmire, I wander about the house like a lost sheep, and my son has to remind me to eat, but when I'm at work, I'm in that other 'zone'. Constantly double-checking myself is exhausting, though, the determination to prove I can still do my job etc. The neuro-psych suggested CBT, but I can usually read myself well enough to know if I need to remove myself from a situation, or temper my first response. My fatigue is the slow, creepy-up kind, I tend to have enough of a warning period to safe-exit if I know I'm starting to get foggy, and it's not happening so much as it did at first.

sospan profile image
sospan in reply toGaia_rising

Amazing duality of functioning you have, almost two different people in some aspects.

Cognitively, I have been tested so much that I know the questions now. However, medically nothing!

Candace8 profile image
Candace8

I think the brain goes into a diff preoccupied mode when you driving so I don't think you should think too much about it. Yes there is a lot of what ifs ect. Remember there are people out there who are badly drunk or on drugs who drive. The brain function changes so much that's why they hardly ever crash. Don't get yourself too worried about it yet. If you need to stop driving you will know. That's why the specialist don't say stop driving. They know the brain more complicated than that. X

SAMBS profile image
SAMBS

Hi sospan, yes I had the car accident! All out of the blue on reflection now. At the time I was convinced I knew exactly what I was doing, I'd done an emergency stop at kerbside of wrong side of road - that's what too me well over a year to realise that I hadn't been aware of being on wrong side. In my book I'd stopped to prevent an accident not cause one!

I will say that if I'd been driving in UK and not France where I'd already driven happily for 6 years, half of it on a French licence as well, I'm "convinced" there would not have been an accident. So perhaps my brain just lost track of being in a foreign country! I'd had to assess the situation that made me do the emergencŷ stop. Perhaps that having to assess, process and react to the information so quickly is why I didn't realise I was on wrong side. I was just concentrating on trying to avoid the oncoming car from hitting me!

I'd been under stress perhaps on that day. 1st trip out 4 days after arrival in the new home, driving in an area I didn't know, listening to and glancing at GPS to give me correct instructions.we all know stress plays its part in BI's.

To all who say you retested and passed with flying colours, including emergencŷ stops, and the stress of even having to retest - if you've done that, go for it - and go for your Doctors also! Get bolshy in a nice calm way with them, they are the impediment - it sounds like they are protecting their own backs not yours!

There is obviously no DVLA directive saŷing people with BI not allowed to drive, given many on this community have doctors who have supported their patients!

I Hope all are doing better if not well. Shirley

sospan profile image
sospan in reply toSAMBS

Nice to see you back on the board.

Long before by injury I used to drive all over the UK and Europe never had a problem which side of the road to drive on whist in Europe. However, without fail about a month after getting back to the UK I would pull out of a junction and drive on the wrong side.

Cognitively or with my reactions they don't have any concerns, just that I shut down during the day in an arm chair.

SAMBS profile image
SAMBS in reply tosospan

?.thanks good to be back for a while, I'll probably disappear through forgetting again :-(

That's exactly what my husband did on days he wasn't working and certainly since we retired here, Shut down for an hour or so in the afternoons - he didn't have a BI either. Just having 40 winks we used to say. I wonder what HIS doctor would say about that, if asked now?

Sounds to me like you are back to ' normal' - I know I'm not yet in terms of 100% awareness and the time it takes to process info on signposts, only from being a passenger, mentally going through the motions, although the Court and police gave me my licence back without me doing the 2 day Highway Code course!

I do hope you get your licence back very soon. So often accidents are caused for reasons other than BI's, as you will be very aware with all your driving experience. Have a good weekend :-)

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