Seizures waiting on tests

[silvershark22]

I was hospitilised 3 weeks ago with a first seizure. ECG CT were normal but waiting on an EEG. My discharge summary says to call an amvulan ce if over 5 m. Should i let anyone know if I have more?

Thinking ossivbly had one in sleep have wet bed fortunately had waterproof matrice protector on. Not sure how to mannage in the day with potential incontinence.

Vit concerned as have a wierd tingly feeling in an arm which previously haed with seizures.

Think probably did have another seizure. Woke up with a pounding headache and a wet bed. After a couple of hours sleep am feeling OK. Not really sure what I should do though. Do I just log while I wait for the appointment?

Hi I've just been put on Keppra because of focal seizures in my leg, however I suppose they want the results of your EEG before deciding on the course of treatment for you. In the meantime I'd contact your GP to make them aware that it's still an issue and perhaps they can help speed up the tests. If I were you I'd also ask to be referred for an MRI or CT scan, preferably with contrast. I hope it works out.

Thanks, Sorry to hear you have started with seizures. How long did it take to get diagnosed? Is the medication working for you?

I have had a CT in A&E but I don't think they used contrast.

There was some suggestion that the seizures may be functional. I worry that this could be slowing down the testing. I agree that I have had a really stressful time. However, I think there are two different things that happen. The first which the neurologist saw a video of I kind of feel super distant before but have some awareness of. The second I get wierd tingly sensations and a odd taste or smell and I have no awareness of what is happening and tend to feel be super confused when I come to, am usually sick, have a really bad headache and need to sleep for hours. I am more concerned about the second type but haven't managed to get a recording as its generally if disturbed in the night.

I seem to have had another seizure. Woke up and was sick. Have a bump on my head and sore arm.Think will try calling my GP tomorrow as not sure why this has happened the past few nights.

How are you @silvershark22

you could call 111 today or go and get seen if you are worried about your symptoms.

Hope all ok

Hi feeling quite tired and headachy but not sure their is much 111 can do. Phoned after a seizure earlier in the week as my GP had no appointments. They said they had booked an appointment at my GP. The GP admin then called and said no appointments so to go to A&E as walk in is nurse lead.

Hi I'm in a different position to you, in that I had brain surgery to remove a brain tumour and the tumours have come back, so the doctors seem confident that this is what's causing my leg issues. I get an a dull headache too.
That's why I suggested a thorough head scan at least to rule out the possibility of a tumour.
There are lots of causes of seizures though - I think it's a good idea to be persistent with going to A&E, trying to see the GP - it's much too early in the course of your problems for them to be talking about a functional disorder. You should also be referred to neurology, they're the one who should be saying this after completing their assessment. At the moment people who are polite and non pushy end up at the back of the queue!

Thanks @mistymountain. Sorry to hear of your tumour, hope you have a good treatment plan in place.

It was a neurologist who saw me in hospital who said the video she saw looked functional. We talked about this as I did think there was a stress component. They were going to refer just for therapy but then I talked about the ones on waking up with the weird tingling sensation and they asked me to try and get a film of these but to have and EEG.

Will going to A&E really speed anything up or just give me long waits to be seen?

@silvershark22 thinking about it maybe going to A&E won't speed things up. Do you have your discharge notes from your hospital stay? If you don't then I would do a SAR to the hospital, to request your records, also if you have been put under a consultant phoning the secretary may help you find out what stage your EEG referral is at. I really wouldn't be happy with the functional explanation at the moment.
I don't want to make you feel paranoid but I'm just conscious that things are falling through the cracks at the moment.
I requested my MRI scans and identified a tumour that the radiologist hadn't spotted, so I now have 3 instead of 2 tumours, it helps to keep on top of things.

Thanks @mistymountain I have my discharge summary. However, it doesn't have any mention of what consultant I have been referred to.

The CT and ECG it says were unremarkable.

My GP hadn't had a discharge summary though. So will try and chase it so they get one.

One time my blood sugar was a bit low after a seizure which seemed strange as had eaten a couple of hours earlier.

Agree we shouldn't have to be so careful at checking, but stuff does seem to slip through the cracks at the moment.