Would you go to a&e?

[somethingisnotquiteright]

With persistent headache (3 weeks), thunder clap headaches on one side roughly every 5 minutes & left sided weakness?

I went last week with these symptoms after I collapsed (didn't lose consciousness but was effectively 'locked in' for about 10 mins..couldn't move/speak, only way to communicate was with my eyes.

6 hour wait for ambulance, 7 hour wait in a&e. I self discharged after bloods & CT came back clear because it was 2am and I have young teens at home. Would have been there another 18-24 hours waiting to see neurologist.

Headache has intensified and I keep having what I can only describe as mini seizures, lasting approximately 10 seconds giving a very strange sensation in my head and I'm unable to do anything at all until it passes (my collapse was like a longer version of these)

Would you go back to a&e or wait to see GP (who is likely to send me there anyway)

Just thought I'd update.
Went to a&e, was sat waiting for 5 hours before being taken to AMU.

Saw 8 different doctors/nurses over the course of the day including stroke nurse and a senior consultant.
I had to explain all my symptoms from the beginning to every single person I saw.

The last 2 drs (including snr consultant) were very dismissive about everything. Discharged with cocodamol and referral to neurologist for the sudden aphasia (which has been going on for weeks before collapse but according to discharge notes has only been 24 hours)

I had an MRI 2 weeks before I collapsed (due to the sudden aphasia) but because this came back clear, they weren't willing to do another scan..despite the fact 99% of symptoms started after the MRI. I tried to tell them I need a contrast dye MRI, they weren't interested & very dismissive.

Reading through the discharge paperwork there are so many errors, including medical history.
I had even made a bullet point list of all symptoms towards the end of the day because I was fed up of repeating myself and none of these are on my letter!

I'm really angry and really don't know where to go from here.

We mentioned TIA several times, they weren't interested. Said unlikely..despite the fact I had one 18 years ago (which I told them)

Go back. Contact PALS whilst you are there. There's a 30 day remission rule that means they have to do a full clinical review and if found linked to last visit there's some sort of penalty.

We will be contacting PALS.

I have been holding my head and struggling with focussing all day because I'm in so much pain. Discharge notes say 'no visible discomfort'..I mean WTAF!?

I think the only thing they got right was my name..

Can you go back now?

They said I should get a call tomorrow regarding the neurologist appointment so will wait to see if they will see me tomorrow.
If not, we will go back to a&e. My husband will be with me this time to advocate for me.

God, that's dreadful it sounds like they weren't prepared to even listen to you
I'm sorry you're still in such pain
I think you do need to go back to A&E and let your DH advocate for you( you shouldn't need to, of course)
I hope they can get the on call neurologist to come and see you

I think they did listen - you said you told the history eight times. It's important with headaches to get the story right as that is the key thing.Sometimes if you give a lot of over or irrelevant detail it can be harder to get the key details correct. If you have had an MRI and CT then the main other things are neurologist rv and LP if they were worried about a sub arach.
Let us know how you get on with the neurologist.

I understand & appreciate what you are saying.

The MRI was done before I collapsed with TIA symptoms. I had sudden onset speech difficulties/aphasia 2 months ago so went to GP who ordered urgent scan to rule out a tumour. This came back clear.
A month after scan, I collapsed with TIA symptoms but they haven’t disappeared, they’ve been getting worse.

Having to explain symptoms to so many different people with poor speech, slurring & stammering (which I've never suffered with before) was incredibly difficult so I bullet pointed notes. They had it all in black and white yet my discharge papers say something completely different. They didn’t listen or if they did, disregarded everything I’d told them.

We are currently going through this with very similar symptoms. Ended up paying for a private neurology appointment as the waiting list was over 1 year long. We're in month 7 of symptoms and no closer to finding out what it is.

I've had similar, without the left side weakness and it was a form of migraine, continued for a few weeks then disappeared just as quickly as it started. Dr was as surprised as me. All scans normal (I have private medical so was no skimping )

slurring & stammering (which I've never suffered with before)

Sounds like a migraine, did they mention this?
It's unusual for a neurological condition to cause both slurring and stammering. They're caused by different things and that may be why they seemed bit dismissive of you, because your symptoms weren't making sense

I ended up paying for a private scan, I’m so glad I did.

If they haven't done a CT angiogram or an MR angiogram (head and neck, if poss) they won't have had a proper look at the blood vessels.

There are multiple symptoms - so your history might have highlighted these but on examination did they find weakness? If there's no pattern to the symptoms that make sense and no neurology or evidence of structural abnormality then that might be why they seemed dismissive - not to say you haven't experienced them but they perhaps didn't find any neurology on examination. Hopefully the neurologist will shed some light on the situation and give an expert opinion.

You also need to see a speech and language therapist with those symptoms. They can do a raft of tests and pin point what is going on with your communication and what it most likely points to. I'm an SLT an regularly discuss with doctors what the outcome of my diagnostic assessments are.

Also if you self discharge it sort of ruins your treatment plan and then you don't get sorted out properly as outpatient plans are usually much slower

I wonder if the TIA suggestion may be misleading as the T is for transient meaning it passes off after a while and whatever you have is not transient, it is lasting
I have no idea what it may be but good luck in getting sorted

Sounds like a hemiplegic migraine

Hope you get sorted op
I have also started with adult inset stuttering and headache. CT scan clear but everything I read said adult inset of stuttering is very rare. I'm wondering if the sudden increase in this is linked to Covid as I started having problems after I got Covid.

Is the hospital a tertiary specialist centre for neurology?

If not it might be worth googling which hospital local to you is the specialist centre for neurology, they may be able to evaluate your symptoms better.

Just as an example my local hospital is the specialist centre for cardiac and haematology so patients with complex needs or serious conditions are referred to us for up to three hours away. A hospital 30 mins down the motorway is major trauma, renal and neuro, and one an hour away is gastro and endocrinology.

I'm so sorry you're going through this and really hope you can get to the bottom of it quickly. Is there any possibility of you going private?

I'm also suffering with a neurological problem and like you, was discharged from hospital with completely incorrect notes. I spoke to my gp about it and she said it's happening all the time at the moment.

This was a query on the discharge letter. They didn't mention this to me at all, only when I read the letter.
I've read a bit about it and the symptoms do seem to fit.

My current symptoms are;
-Sudden onset stammer/aphasia which started 2 months ago.
-Collapsed last week, no loss of consciousness but complete loss of feeling/movement/speech for approx 20 mins

The following symptoms began after the collapse.
-Slurred speech for 24 hours after
-Significant left side weakness (this was tested and all doctors agreed)
-Constant severe headache (painkillers don't touch it)
-Intermittent intense pains on right side of head

They said I will hopefully get a phone call today to go back in & see neurologist today. But they also said if I can't be seen today, it will be at least within a week.

Good to hear your getting urgent follow up.
Let us know how you get on

fingers crossed its today x