UK Keratoconus Self-Help and Support Association

Hi All,

I had a bit of a scare last week. Whilst sitting at my desk at work, I was looking at my screen, and reading. Only thing is that the email I was reading didn't make sense. It was if words were missing from it. I read it again - different words missing this time!

Then I tried to move my head. Result! I had been totally unaware that words on the right were even there. No black outs, just... an absence of anything to my right, accompanied by the mildest of headaches.

Slight panic, but all was well within 10-15 minutes. Then it did it again. OK, I thought, Off to Eye Casualty. Which one? Moorfields (reasonably close to work) or my local one (10 mins walk from home). I went home.

Went to the hospital to find that the eye casualty unit no longer operates a "walk up" system, and I needed a letter of referral - but never mind, I can get one from A&E as long as I hurry - the eye dept. closes in an hour!

So I went down to A&E, was triaged and sent back to ophthalmology. The sister agreed that my symptoms were odd, and that I needed a visual field test. So I had one of those. I was then told that the department was closing, and that I should go home and return the following morning to see a doctor. So I went home!

Whilst at home, I had another episode of the disappearing right, but this time it was accompanied by a HUGE headache, and a bit of vomiting too. The headache was really bad, and it lasted about 4 hours.

Friday morning, and there I was back in the eye department. First I waited for them to find my notes, then for triage (again) and finally in the queue for a doctor for three hours. The very junior doctor was completely stumped. He called a consultant who was gobsmacked that the junior doctor hadn't taken my blood pressure. She then sent me to see the medics - I was to see a registrar at the very least, and to have an MRI scan. The junior was then instructed to escort me to A&E. He didn't know the way, so I had to show him!

In A&E now, and more waiting, being triaged yet again and bloods taken. Next thing I know I'm waiting for an MRI scan - they think I've had a mini-stroke.

Almost 4 hours since arriving at A&E, and I'm whisked upstairs... to a ward. Claire (who has by now arrived from work to be with me) asked why I was there. They allegedly didn't know, and certainly wouldn't tell me. It seems that A&E have a four-hour-rule, which sees them punished if they've not dispatched me (home or to a ward) within that time. Hrmph! I'm fed, and told to wait for the doctors. Claire is still trying to find out what's wrong. The MRI results come back and I haven't had a mini-stroke... but the ward nurses want me to wait for a doctor (on Monday, would you believe!) After a LOT of pestering from Claire (she really is a star!) the doctors agree to see me that evening. They eventually turned up at 9pm just as Claire is threatening to take me home. The doctors (three of them) then suggest that I needed a lumbar puncture. Neither Claire nor I were very keen on this idea. All the doctors would say is that they needed to do one because the MRI was negative. It all made no sense.

The doctors seemed very keen to keep me in, and promised to do the LP there and then. So Claire stayed with me. 10 o'clock (pm) came, and Claire then went home to fetch my things, as we were losing faith in the system.

The following morning (Saturday) came, and after breakfast, two doctors (the SHO and the registrar, but not the consultant) turned up, told me that they would do the LP now, and provided that the fluid drawn was clear (not bloody), I would be able to go home by noon. They then proceeded to attempt to stick a needle in me. Just as I was about to faint, Claire arrived (still a star!) and helped nurse me - as the nurses were completely absent. The SHO tried to do the procedure 3 times, then the registrar tried again about the same. All the results were the same... lots of pain, and no successful procedure. I was then promised (at 10am) that I would be seen by an anaesthetist, who was more experienced in the operation. Claire pointed out to me that I'd not signed a consent form.

By 5pm, Claire and I were very annoyed. Nothing was happening, and we tried to go home again. This time, the sister told Claire that I shouldn't go home, as they suspected a bleed on the brain, and urgently needed to see the LP results. Claire then agreed that I should stay - but remonstrated with them for not informing the patient... their response was to say that it wasn't their policy to tell patients what they thought to be wrong in case the patient sues them! Apparently, I gave verbal consent to them for the LP - news to me - I'd say that I was bullied into it! The original registrar said that he would try again. At that time I started getting dressed to go home. He'd already caused me a lot of pain for no result, and I'd only agreed to stay to allow an anaesthetist to have a go. He agreed to call the anaesthetist again, and confirmed that I was on her list.

10.30pm, and I was finally put in a gown ready for theatre. The anaestheist was great. She explained everything, and made me sign a consent form. The Anaesthetist and her assistant and the nurse did a great job. They still took several attempts, but were very reassuring that all would be well.

I was back on the ward by 11.10 pm, and as I had to lie flat for four hours, decided to stay a further night; so I tried to sleep, and Claire went home again.

Claire turned up again the next morning (Sunday), and as the LP results were clear tried to take me home. The different registrar tried again to stop us leaving telling us that it was hospital policy to keep me in until the full microspopy results were in... on Wednesday! At that point, with no medical evidence to the contrary, I discharged myself, and Claire drove me home.

My back hurt as if I'd been kicked by a horse, but I had my own nurse to look after me. It's a lot better today, and I'll probably go back to work tomorrow.


In the meantime, does anyone have any suggestions as to the original vision loss? Was it likely a migraine as has been suggested?

[I've purposely not mentioned the name of the hospital; and I've not mentioned individual's names - because nobody ever introduced themselves!]

John

Hi John
What a nightmare! But as I was reading your first paragraph, before I got to the bits about lumbar punctures and MRI scans, I thought 'he's describing exactly my migraine symptoms'. Except that I think my 'missing bits' are on the left rather than the right (including black holes where parts of people's faces should be - most disconcerting!) And yes, it can be a bit like a mini stroke so I can understand the medics wanting to exclude that. Very scary the first time it happens. I'm assuming from what you say that all other possible causes for your symptoms have now been excluded. In which case, the combination of visual disturbances followed by a thumping headache like no headache you've ever had before (usually over one eye) plus feeling nauseous or actually being sick sounds like a classic migraine to me. Not that I'm a medic of course! If that's what it was, I hope it was a one off. And if it does happen again, at least you'll know what's going on. So glad Claire was with you, especially as it doesn't sound as though the hospital was providing any TLC! Wishing you a speedy recovery.
Anne

sounds like you had a nightmare time, bet next time you decided to go to moorfields rather than the hospital near your home thou

Thanks both.

Yes, Anne - my headache was all on the left side towards the front. So I'd say that sums it up well. Although the LP fluid was visually clear, I've got to get my results somehow. Seeing my GP on Monday, and hope that he'll have them automatically sent to him by then.

Seriously though, the ward staff were awful. There was a poor gentleman next to me who was bubbling through every breath, and he was largely being ignored by the nurses, and was completely ignored by the doctors (they weren't told his condition, and as it was a weekend...) until his blood pressure was so low the machine couldn't read it. Doctors were then furious, as were his relatives when they were called in at 4am to say goodbye.

Liz, I was wondering about being shut up locally or at Moorfields; and being on an uncaring ward notwithstanding, I'd prefer to be near home. God only knows where I'd have ended up if I presented similarly at Moorfields; somewhere in the East End probably, and certainly nowhere near for Claire and friends to visit!

John did any ne look at ur IOP's and check to you with a gonioscopy lens. headache and transient loss of vision and defo defo the vomiting and extreme feeling of sickness are all major signs of angle closure glaucoma on there own but together ALARM BELLS sud be ringing in an ophthalmologist ears?? did any one mention glaucoma ?

Hi John

Lovely to see you up and about! Claire told me what was going on...

I think I agree with Anne that its a migraine, now that I have seen your symptoms in your own words. I know from Claire they were talking TIA (Transient Ischaemic Attack) but you don't generally get headaches.. more a sort of faint and/or sudden collapse.

In classical migraine, the blood vessels in the brain constrict, which causes the "aura". This is different for everyone but generally is either shimmering/flashes or visual field loss. This lasts classically 15 - 20 minutes and either simply goes or morphs into the headache from hell. This phase is caused by the constricted vessels suddenly expanding. If they expand slowly to normal, the visual loss comes back and no pain. If they slam open, pain receptors are stretched which causes the extreme pain. When a migraine attacks, digestion stops dead which is why painkillers don't work (they don't get absorbed into your bloodstream) and why you vomit.

Suddenly getting migraine when you have never had it before can be partly due to stressing factors. Or it can just happen.

Anyway.. glad you are feeling better!!!!

Lynn

Hi JOhn!

What a nightmare, indeed!!!! I do hope you complain to the (unnamed) hospital concerned.
It does sound like it could be a migraine.
I'm one of the people who suddenly developed a tendency to get migraines when grown up - aged 31 IIRR. SO commiserations if you're another one of the clan.
I do hope not, and that it'll never happen again.
Just in case, have you any thoughts about anything that might be a possible trigger factor (or combination, as they reckon it's combinations of factors that set them off)?
One of mine is bright lights - either very strong low sunlight, or trying to look at bright computer screens too long.
Other people say it can be flashing lights (like those that set off epilepsy).
Maybe time to adjust the computer screen settings????
[My first one came on a day with a very strange weather phenomenon! I'd gone to Ascot races. Bright sunny day in autumn, after a rainy night. THe sun started to pick up water from the wet grass and make it into mist.
First race was run in bright sun, second in bright sun with a patch of mist right at the far corner of the course. Third race with mist acrossthe course. FOurth with everyone peering through the fog trying to see the runners coming round the turn into the home straight for the last two fences - and craning to see any TV screen handy in case they had better pictures than the view we were getting.
Fifth and subsequent races were abandoned as the judge couldn't see the pwinning post !
But while the le the fog was getting thickr and thicker, and rolling up from the far end of the course towards the grandstand, it stopped there - trapped against the tall building, presumably.
While all the racegoers were crammed into the bars in the stands, peering inthe the gloom trying to see anything onthe racecourse side, and peering for a view of the tvs, there was still bright sun steraming in through the large expanses of plate glass on the car park side!! very odd and very hard onthe eyes - and the head! Though it took me ages to realise the sickness was called migraine, and not food poisoning from eating cold roast beef sandwich in racecoruse snack bar1}
ANyway, do hope they sort out what it was and what to do about it soon. DO ckeep us posted.
And hope you're recovering from a thoroughly horrid and uncalled-for experience.
Rosemary

John

I hope that this TIA is the first and last. Thank goodness you have Claire, with her qualifications and experience as well as her love, to be there for you.

All the best

Andrew

John, good to hear you are back on your feet and hopefuly recoverd, just take things easy and don't let Claire boss you arund too much

To be honest i blame Claire for being so demanding

Going to run for cover before she gives me one of her punches

Take care both of you.

Gareth!!!

Dam just missed you!!! You'd better stay hiding I think or I will get you next time!!! LOL!!!

Initially I did think it was a TIA or something similar, but John didn't have any weakness and was able to smile, though he wasn't sure why I was looking at him so intently and asking him to smile at me when he was in pain!! Awww!!

The hospital were completely useless, well this ward anyway. 'A & E' from what I have heard were good though I know that I would have definitely done an ECG on a patient with a suspected TIA or bleed. Am disappointed that the nurses didn't think about it when we used to do one on most patients and more annoyed that the doctors didn't ask!!!!! I do know all about breach times, it was a major headache when I worked with it! All patients need to be discharged or referred to a team for treatment, e.g. surgical, medical before the four hours breach time or 'A & E' get fined. It moves patients quicker, but it would have been much better if the nurses would have told us what was happening!!!! You can't just stand there before we left as this nurse did reading through the notes so that she could tell the ward staff and then say that you have no idea what is happening! Ehh??? Didn't you just stand in front of us reading why he was getting admitted????

The ward sister telling us that she couldn't tell us why he was admitted because if it turned out to be wrong they could get sued is just pathetic!!!! Isn't that what a nurse is for??? Isn't she supposed to tell patients what is happening and be an advocate between the patient and the doctor??? Did I qualify and completely misunderstand what my role is? WOW that's 7 years that I have got my job totally wrong!!! As I always tell patients why we are doing a test, what it will involve and make sure that they are happy to go ahead, have all their questions answered and SIGN a consent form declaring that they are happy with it.

In the end I told this sister that if she wouldn't tell us why he was there after two days of constantly asking, I was going to take him home. I said that he can self discharge which made her think and she read through the notes with me. It is dam unfair though that you have to go through that. John wouldn't have nagged to know and most patients are the same. Sadly most don't have someone with them who is willing to shout and ask. A lot of patients are just too unwell to be asking and it is not up to them to make a fuss, that is what nurses are for!!!! They are unwell and need looking after, they do not need to be questioning the care or tests they need. I just thought the whole thing was disgraceful and gives nurses such a bad name.

Sadly the patient next to John was very unwell and I said that he needed to see a doctor as soon as I saw him as I didn't think he should have been left like that. He could hardly breath, he was so bubbly despite oxygen and nebs Sadly it was the weekend and doctors don't make ward rounds, nurses could and should have bleeped them to see him. They waited until it was too late to do anything I feel very sorry for him and the relatives and I really hope that they complain which we did hear them discussing. Nurses only came onto the ward to give drugs and nursing assistants did all the observations. There was nothing in between, no-one came around and asked if everything was ok, went through the tv controls with us or at the very least introduced themselves!!! When John is better we will be making a formal complaint as I was upset with the whole thing and just so glad that work let me go early on Friday to be with him and gave me compassionate leave on Monday to look after him at home. There are some nurses who genuinely do care, just a dam shame that it doesn't cover everyone.

Sadly though I am now unwell It could be all the stress with everything John went through, or just something that would have happened anyway Since Saturday morning I have had a MS relapse, I can't feel my feet or legs and am finding it hard to balance or walk. Obviously work have said that I can't be in like this so had last week off self certified, which was nice as I looked after John and I have just got a sick note off the G.P. for next week. She wanted to give me two weeks but I just want to go back to work so am hoping to be better by then. It is not terrible, I changed jobs because I was diagnosed with M.S. and this is the first relapse in two years since I moved to a cardiac day ward. They are being very supportive, I just need to take some time and rest. Hahaha, very funny when I am climbing the walls!!!!!

Ok, thanks for listening!! I am just more than happy that John is better and thanks for all the lovely replies! Hoping that everyone is ok?!! Loads of love Claire X x X