To be worried I have a brain tumour….

[87SPD]

Just wondering if anybody has any similar experience/knowledge ……..

2 weeks ago I had my first ever seizure (husband found me in the hallway face down) he said I was rigid for about 5 minutes making grunting noises and my jaw was clenched shut and then unconscious after for a couple of mins. I just remember waking up confused with paramedics around me.

I went to A&E and ended up in resus and diagnosed with Atrial Fibrillation. I've since had really fuzzy headaches, bizarre smells like something is burning but nobody else can smell it and internal twitching particularly after waking. Also extremely fatigued but have been for a while.

My GP arranged a CT brain scan for me which I had 2 days ago. I am still feeling so groggy and the seizure has really knocked my confidence. I'm just in a bit of a state really and wondered if anybody could advise? Particularly on how long the CT results may take? Could this be something like epilepsy?

Many thanks 🙏

Like others said if anything was noticed on CT you’d be referred on for an MRI.

It could be epilepsy, my daughter takes two tablets a day and leads a relatively normal life.

it could also be Non epileptic Attack disorder, I suffered with this due to too much cortisol from trying to finish a PHD and bad break up of long term relationship = too much stress. Instead of the electrics( epilepsy) it’s a software issue but presents the same as epilepsy. My blood pressure would drop and I’d faint, I also had a mixture of absences and full tonics fits.

however none us can definitively give you the answer…. I thought I’d make you aware of a stress induced condition as it’s not well known.

My friends son had a brain scan and they were told immediately that they had found a 'mass'

Thanks again for the replies. I’ve had a call from the doctors surgery this morning and they said the results are back and they have referred me to the neurologist based on the results. They couldn’t tell me what the scan said as she emphasised she hasn’t got a medical background so not able to which is understandable. She said I will be seen by July so I am completely as ease to know this won’t be a brain tumour but would do you think they have seen something perhaps epilepsy? Or would they want me to see a neurologist even if they were clear?

Just to clarify the scan was requested by my GP and not neurology so my thought is something needs to be discussed?

A colleague has said that she waited around 4 months for her neurology appt so still slightly apprehensive with me being seen within 6 weeks but relieved it can’t be sinister if that makes sense.

Thank you for your responses, so comforting being able to talk 😊 and sorry to anyone going through a scary experience too.

Best wishes and hope you don't have too long to wait.

NHS guidelines require a referral to neurology following a first seizure. So if A&E didn't refer you to neurology (often they refer to a "first seizure clinic"), then the GP will be required to refer. So the scan may not have shown anything at all and the GP is just following the referral guidelines.

The reason for referral is usually so that epilepsy can be confirmed or ruled out by the specialists (EEG will be done, discussion of what happened at the time, and possibly MRI).

So I don't think you can read anything into the referral. If it is epilepsy, you should know that many people have one seizure in their lifetime and never have another.

Thank you for this, that is reassuring to know.

I have been referred to the ‘first fit clinic’ by my GP and so waiting on an appt with them. The receptionist said that based on the results I have been referred to a neurologist which I guess like you say could be because it’s clear and further investigation needed. All good signs I suppose so trying to stay positive!

Do you happen to know if epilepsy can be detected (or suspected) via a CT scan?

thank you again!

Thank you so much 😊 x

The smell thing can be a result of Covid. I smell things that aren't there or things smell different tonormal. It doesn't have to be related to your seizure

The only way a CT scan can diagnose epilepsy is if it shows something structural which could have caused the seizure - like a cyst, tumour or bleed. But I would have thought that if any of these things had been seen, you would have been referred urgently.

Epilepsy is mainly diagnosed by EEG, (electrodes attached around the head to measure brain electrical activity).

Did you actually speak to the GP? If it was just someone from your surgery passing on a message about the referral, then I would be asking for the GP to telephone to give you the results of the CT scan. A GP should be able to do that.

I agree with @anywinewilldonow. Book a telephone appointment with your GP, they might be able to give you a less vague idea?

It might be that the scan is normal so they are referring you to neurology for further assessment. I would also phone your GP and ask as you may have a bit of a wait for neurology.