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My brain hurts!

(41 Posts)
Luckygirl Mon 26-Mar-18 14:02:01

After a second episode of epigastric pain followed by a plummet in blood pressure and losing consciousness (OH said I was grey and drenched in sweat and out of it for a ,long time) and a trip to A&E in an ambulance, GP referred me for an urgent CT.

I rang hospital and they said the referral had to be triaged and, if agreed as urgent, it would be about 4 weeks. Talked to GP and referral was sent to private hospital (I know, I know) for CT, which is booked for 6th April - they only do them on a Friday! Mega-bucks involved.

Heard from NHS hospital today - it has been agreed as urgent and that an MRI is more appropriate, and it has been booked for 8.30 am on Easter Day!!! - which just happens to also be April Fools' Day!!

Waiting to hear back from GP as to whether I should cancel CT - I assume so. That'll save me a bit of dosh from my savings!! Hoorah!

I am happy that they are cracking on with it, because I am having trouble sleeping - on both occasions the problem has occurred as I lay down in bed; as I lie down now I keep getting flashbacks to the last incident and it jolts me awake. I will be glad to know what is going on here.

OH (a doc) thinks I will die and there will be no-one to look after him - hmm.

hildajenniJ Mon 26-Mar-18 14:16:52

Four weeks wait for something that is urgent. That's dreadful!! Easter day is okay , and it seems that an MRI scan is better than a CT scan. I can only wish you luck, and hope that the cause of your malady is easily treated.

kittylester Mon 26-Mar-18 14:21:03

Flipping heck, Lucky!

Glad something (anything?!) is happening - it must be very scary! flowers

OldMeg Mon 26-Mar-18 14:28:42

Also glad that you’re having a scan in the not so distant future. Hope you get the results quickly too.

morethan2 Tue 27-Mar-18 06:11:34

I hope you get this sorted quickly, it must be a worry. Fingers crossed and all that here’s hoping you live up to your user name. Xx

Billybob4491 Tue 27-Mar-18 06:51:13

You are in good hands, hope all goes well for you.

Nana3 Tue 27-Mar-18 07:10:58

Thinking back to the pain I had before I eventually had my gall bladder removed and sending my sympathy and best wishes lucky. flowers

cornergran Tue 27-Mar-18 07:50:21

Blimey lucky what a muddle. Hope the MRI is agreed to be the best option. Not long to wait. No wonder your head hurts with it all. flowers.

MawBroon Tue 27-Mar-18 07:58:20

Keep the private appointment in case I think. “A scan in the hand....”
It is a reminder that the NHS does function 24/7 at least in hospitals, Paw had a colonoscopy and gastroscopy booked for Easter Saturday last year. The hospital car park was deserted, the M1 and roads to the Royal Free deserted ( well it WAS a Saturday when Golders Green is almost entirely free of traffic) and the easiest visit I have ever done. (The fact that their admin had yet again cocked up and they had no record of the colonoscopy referral another matter, but the less said about my frustration that day the better)
I hope it shows nothing that can’t be fixed and puts your mind at rest.

Liz46 Tue 27-Mar-18 09:17:53

I had a CT scan over four weeks ago and don't know the result. I finally got through to the consultant's nurse yesterday but she couldn't find it!

Iam64 Tue 27-Mar-18 09:24:56

Goodness Lucky, what scary experiences and what shocking delay.
MawBroon's advice is good - keep all options open x

knspol Tue 27-Mar-18 10:17:18

Agree with Maw Broon, keep all options open, NHS apt may get cancelled at last minute. Hope all goes well for you.

ReadyMeals Tue 27-Mar-18 10:20:21

You could have a type of epilepsy, or an autonomic disorder. It doesn't sound like dissecting aorta or it wouldn't just come and go and come back again, you'd remain seriously ill until treated.

Cherrytree59 Tue 27-Mar-18 10:29:05

It may be Easter and All fools day (my sil birthday)
But more important It is your day Lucky, to get your treatment sorted and set your mind at rest.

Good luck
I will be thinking of youflowers

Lilyflower Tue 27-Mar-18 10:43:08

Have the scan whenever they offer it.

My DH had a prostate cancer scare and was immediately offered an NHS MRI scan at 7.30 in the morning two days after Christmas on his birthday when we were just about to head off to family in the West Country.

It was a massive inconvenience and yet we were very grateful the system was up and running and that the staff were there to help us. The relief of a quick diagnosis was very great too. It made us realise that the 'NHS in crisis' narrative was much exaggerated.

We are very lucky in this country. Have the scan and be reassured as quickly as you can.

Luckygirl Tue 27-Mar-18 11:05:23

I will be there on Easter morning raring to go - I desperately want to know what the cause is and whether anything can be done about it. I am finding the uncertainty very difficult to handle. The symptoms are a bit of a mystery - I have no gall bladder, and it could be bile duct/pancreas etc. (some blood results hint at this) - I have constant pain in that area. But the pain that precedes the loss of consciousness is entirely different and has only occurred on these two occasions.

The worry is that OH will not be alert or fit enough to deal with getting an ambulance if I conk out again. On the two occasions that this has happened I have managed to get through to him but I do feel anxious that he might not hear. This time he rang 111! - I have told him to go straight for 999 next time - to be fair, that is what 111 did, but it just another step in the process, and delay is not good.

It is very bizarre - it is as though something just switches my blood pressure off; it is not remotely like a faint, when you get warning that it is coming on.

Thank you for all your kind wishes.

VIOLETTE Tue 27-Mar-18 11:33:37

Gosh ! I can't believe it ! I know the NHS has problems with funding ....I live in France (at the moment ...may go back to the UK or not ...depends on a lot of things !) BUT although the French HS is also in dire straits and complaining, like the UK, that there are too many elderly patients (well after all the health services everywhere are now able to keep us all alive longer than ever before, but seemingly never thought of the consequences !) I was taken by ambulance as an urgency last week, only had to wait in the local small hospital for around an hour, during which I was examined , blood tests taken, even a scan (6.00am) fitted with two drips and sent to a bigger hospital by ambulance, where I was given an MRI scan and operated on at 2.00pm for kidney stones and kept in overnight in a private room with tv etc ...the care was wonderful (as I have experienced often, unfortunately ...hospital is not somewhere I planned to be !!!) and discharged at 12.00 the next day by ambulance taxi, paid for , home. SOME, but only a few, of the nurses didn't like the fact that an English person was using their health care facilities, but then, the same applies in the UK with a lot of people !) we do pay a top up to the S1 which is around 200 euros a month ...not a private insurance but this ensures you can receive additional things such as physiotherapy etc if you need and which is not covered by the 100% reimbursement from the French state for any long term illness. WHY do people object to paying in the UK for a better service and more hospitals and staff ?? Yes, it is a big part of our monthly budget as UK pensionersm but it has really been worth it .....transpot is provided every time we need to go to Bordeaux (110 km away) and back, for specialist hospital treatment or appointments ....and yet friends in the UK say 'why should we pay > We paid all our lives into NI etc etc'.......well, so did we, and yes we do at the moment benefit from cover on a reciprocal basis (we still pay some taxes in the UK as well) .......and now read the government is proposing a further tax on the elderly to try to increase the availability of care !! France is in roughly the same boat re care for the elderly ....very very expensive in care homes, but families are encouraged, if they can, to care for their own elderly (not many do nowadays as of course, like the UK, the y need to work in full time jobs ....vicious circle .......

Glad you got your treatment and hope you are feeling better ! flowers

GabriellaG Tue 27-Mar-18 12:19:02

Oh dear...what a frightening situation. I'm glad that appointments have been sorted but, as a doc, couldn't your OH pull a few strings to get you seen sooner?
Meantime, chin up and good luck.

Nonnie Tue 27-Mar-18 12:53:38

Keep hold of the private one. Although I think it is great that the NHS have offered you Easter Sunday if could be a mistake. DH was sent an appointment for a bank holiday, followed a couple of weeks later by another letter saying that 'due to unforeseen circumstances' they had to change it!

Hope they find something nice and simple wrong.

Bathsheba Tue 27-Mar-18 13:08:48

I'm pleased you've got these appointments, Lucky, and quite quickly too. Yes, I agree with others that you shouldn't cancel the private one, just in case. Here's hoping you'll get a clear diagnosis, and that whatever is causing these frightening episodes can be easily treated.
Sending positive vibes and good luck wishes x

gmelon Tue 27-Mar-18 13:24:09

The MRI results may be conclusive. If not then NHS will take the next step for you.

The fact that you are at home and being treated in outpatients is reassuring.
When the ambulance took you to hospital you were not rushed in for scan immediately and not admitted, take some solace from the positive.

I have had both types of scan many, many times, once on the same day in an emergency, sometimes within a few days of each other. (Numerous NHS inpatient stays).

I think your GP has made the wrong call and the consultant at the hospital has overided with a much more informed choice. GP's do not have the specialist knowledge in a chosen field.
Listen to the hospital. I'd cancel the private scan, NHS are stars when the illness is serious.

gmelon Tue 27-Mar-18 13:33:27

Once you are in the hands of the hospital your GP isn't able to make decisions about your treatment. GPs are never involved in decisions about hospital tests.

You are out of his or her care now for this ailment.

icanhandthemback Tue 27-Mar-18 14:33:52

My daughter suffers with a similar problem which has been labelled an autonomic disorder. The first few times she was rushed to A&E, hitched up to the heart machines and everyone was terribly worried. Now they’ve given her morphine to take away the pain and told her to get on with it. It’s just another thing to floor her like dislocating joints, eyes that stick to her eyelids so they tear and inexplicable vomiting/dizziness.
Hope you get sorted out.

Luckygirl Tue 27-Mar-18 14:44:11

I take solace from the fact that the NHS do seem to be taking this seriously by speeding up the MRI; but I plan to retain the private CT appointment till I know for sure that Easter Sunday is happening. I have not had anything in writing yet.

The problem with just staying at home when this happens icanhandthemback is that on neither occasion (particularly the second) was there any indication that I might come round on my own as my BP was so low; the paramedic was very worried - I heard what he was saying as I started to surface after he had pushed up my BP with lots of fluids. I do not want to acquire brain damage - age has provided enough of that!

icanhandthemback Tue 27-Mar-18 15:38:28

I can quite understand that Luckygirl. My Dd has learned to avoid some of the stuff that triggers an attack (like laughing too much) and also has an idea of what the signs are. At the grand old age of 33, I suspect the symptoms aren’t quite as terrible although still frightening but as there isn’t a cure, she might be looking forward to a similar fate. sad