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Original poster

To be worried I have a brain tumour….

36 replies

87SPD · 19/05/2022 13:59

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 🙏

OP posts:
CrazyRatLover · 19/05/2022 18:45

@87SPD a hold hold for you whilst you're waiting for the results. I'm sorry I can't help, it must be worrying but please be reassured that you're being looked after and whatever it is will be dealt with I'm sure. I'm sorry you've had no replies, hopefully someone will come along soon. Could you call your GP and see if the results are in?

CrazyRatLover · 19/05/2022 18:45

*hand hold, sorry

Toddlerteaplease · 19/05/2022 18:47

If they'd found a brain tumour, you'd know immediately. The results would be fast tracked.

Toddlerteaplease · 19/05/2022 18:48

The radiographer doing the scan would immediately inform the radiologist.

CrazyRatLover · 19/05/2022 18:52

I agree x

Juniper68 · 19/05/2022 18:54

Have you had any infection, different medication or vaccines lately?

Epilepsy can come out of the blue. A friend of mine started with it at 39. She's on medication and absolutely fine now.

I've had a CT scan and recently a MRI scan for a head issue. I had to wait over a month for first results and haven't had MRI result yet. I hope you hear soon.

somethinghere · 19/05/2022 18:56

My husband had a cyst in his brain, they did the CT scan and he immediately got transferred to a larger hospital on an ambulance. No waiting for results

Original poster
87SPD · 19/05/2022 19:00

Thank you so much for the responses, and the hand hold. Really appreciate it.I’ve lost so much confidence in doing things and the constant headache isn’t helping.

Very reassuring to know that if it was a tumour they would have said there and then so that’s some relief at least! I think I’ll call the GP tomorrow to see if they have had the results yet, if not I can only hope that is a really good sign!

I have had to surrender my license too which at the minute isn’t bothering me as I feel too ill to drive anyway but I know as soon as I’m feeling better it will hit me! It’s only 6 months though so will work around that.

Would a CT scan detect epilepsy does anyone know? And also does the onset of epilepsy cause you to feel ill?

thanks again for putting my mind at ease x x x

OP posts:
Original poster
87SPD · 19/05/2022 19:03

Juniper68 · 19/05/2022 18:54

Have you had any infection, different medication or vaccines lately?

Epilepsy can come out of the blue. A friend of mine started with it at 39. She's on medication and absolutely fine now.

I've had a CT scan and recently a MRI scan for a head issue. I had to wait over a month for first results and haven't had MRI result yet. I hope you hear soon.

Sorry to hear about your friend but great to know she’s all OK on the meds, because I’m so nervous about a potential tumour I will be relieved if it’s epilepsy although I am not at all belittling it’s seriousness.

I haven’t had any new meds or changes etc. I have been really stressed and busy as most of us are I suppose but surely that alone wouldn’t cause me to lose complete consciousness and have a seizure? Sorry I know this isn’t the place for medical advice but it’s just nice to talk about it as I’m too nervous to discuss it with family at the minute and hiding my emotions.

OP posts:
Somuchgoo · 19/05/2022 19:04

Toddlerteaplease · 19/05/2022 18:47

If they'd found a brain tumour, you'd know immediately. The results would be fast tracked.

This.

It took 20 minutes.

I hope that yours turns out to be something minor and easily treatable.

jaffacakesareepic · 19/05/2022 19:19

The burning smell can happen with temporal lobe epilepsy

I will keep my fingers crossed for you it is 'just' epilepsy as this sounds scarey for you, but the longer the results take the less serious it is likely to be

bigbluebus · 19/05/2022 19:20

They usually do an EEG to detect epilepsy. I'm guessing they're doing the scan to rule out other causes first.

Stokey · 19/05/2022 19:28

I get the burning smell regularly. I have vestibular migraines and meniere's disease so it could well be something else.

MrsAliceRichards · 19/05/2022 19:36

OP I'm so sorry you've had this experience. I had something not dissimilar happen a number of years ago. They thought mine was heart related though and I spent 9 days on heart monitors only to be told I was fine and it must have just been a drop in bp or blood sugar. When I arrived in A&E I was still very weak and nearly passed out a second time. That was why the junior doctor jumped straight to heart and that I probably needed a pacemaker. One minute I was out having dinner with friends and within hours I was in a cardiac ICU. My confidence has never fully returned. Any time I feel remotely weak or unwell I panic. I hope you get answers really soon. I just wanted to let you know that I relate totally to that sudden loss of confidence and trust in your own body.

SheWoreYellow · 19/05/2022 19:37

My daughter had an EEG to diagnose epilepsy.

Original poster
87SPD · 19/05/2022 21:37

Ah that sounds like an awful experience. It is frightening to not feel fully aware or in control of your own body after something like this. Sorry you went through that, have you been fine since?

I am freaking out with everything, I was making dinner tonight and got scared holding the knife and I am also getting anxiety when eating in case I suddenly have another seizure and choke. I know that is so unlikely and I need to rationalise more but it really is a confidence killer.

Hope you had no more funny turns and in good health now sending hugs x

OP posts:
Original poster
87SPD · 19/05/2022 21:37

MrsAliceRichards · 19/05/2022 19:36

OP I'm so sorry you've had this experience. I had something not dissimilar happen a number of years ago. They thought mine was heart related though and I spent 9 days on heart monitors only to be told I was fine and it must have just been a drop in bp or blood sugar. When I arrived in A&E I was still very weak and nearly passed out a second time. That was why the junior doctor jumped straight to heart and that I probably needed a pacemaker. One minute I was out having dinner with friends and within hours I was in a cardiac ICU. My confidence has never fully returned. Any time I feel remotely weak or unwell I panic. I hope you get answers really soon. I just wanted to let you know that I relate totally to that sudden loss of confidence and trust in your own body.

Ah that sounds like an awful experience. It is frightening to not feel fully aware or in control of your own body after something like this. Sorry you went through that, have you been fine since?

I am freaking out with everything, I was making dinner tonight and got scared holding the knife and I am also getting anxiety when eating in case I suddenly have another seizure and choke. I know that is so unlikely and I need to rationalise more but it really is a confidence killer.

Hope you had no more funny turns and in good health now sending hugs x

OP posts:
Whitegrenache · 19/05/2022 21:54

Atrial fibrillation can cause rapid heart beat and make you feel pretty rough. However i am not aware of any link with seizures - perhaps the 2 things are unrelated.
However please ensure you discuss with the doctor if you are eligible
For anti coagulation ideally (apixaban) (best clinical data) to prevent a stroke.

Or maybe you have suffered a TIA (mini stroke) caused by the atrial fibrillation which caused the seizure?

Hope you feel Well soon

Original poster
87SPD · 19/05/2022 21:59

Whitegrenache · 19/05/2022 21:54

Atrial fibrillation can cause rapid heart beat and make you feel pretty rough. However i am not aware of any link with seizures - perhaps the 2 things are unrelated.
However please ensure you discuss with the doctor if you are eligible
For anti coagulation ideally (apixaban) (best clinical data) to prevent a stroke.

Or maybe you have suffered a TIA (mini stroke) caused by the atrial fibrillation which caused the seizure?

Hope you feel Well soon

Thank you, they mentioned blood thinners at the hospital due to increased risk of stroke but said I was too young and they put me on beta blockers. The cardiology department didn’t seem convinced that the afib caused the seizure but said it was possible.

A stroke was mentioned, could this show up on a CT scan? I just want to get to the bottom of it really. I do think the groggy feeling I am experiencing could be a side effect of the beta blockers too. I have an outpatient appointment with cardiology soon so will mention it there.

Thanks again for responding 😊

OP posts:
WorriedMillie · 19/05/2022 22:15

IME, if the CT scan would have shown any hint of a brain lesion, you’d have been called back immediately for an MRI and been referred on, they really don’t hang about ❤️

I hope they get to the bottom of it soon and give you some reassurance ❤️

annonymousse · 19/05/2022 22:23

Another voice to say if the scan had shown anything they call you very quickly. I had a brain tumour. I had an mri. They didn't tell me there and then but I got a call and a follow up appt within 24 hours. Wishing you all the best at a scary time. Hope you get some news soon

Juniper68 · 19/05/2022 22:33

Keep chatting to us. Hoping you get some answers soon. I know what it's like. You imagine allsorts.

Original poster
87SPD · 19/05/2022 22:41

Wow so overwhelmed with the lovely responses giving me so much more reassurance. Thank you.

I think if I don’t hear from the doctors tomorrow I will be much more relaxed over the weekend in the knowledge that it would be very unlikely to be something sinister.

Sounds crazy but I really want to take my dog out for a walk tomorrow on my own without panicking - speaking on hear about how I feel has helped my nerves so much! Really appreciate your kindness!

OP posts:
goodplanbatman · 19/05/2022 22:43

Hi. My DH was diagnosed with a brain tumour 6 years ago following a massive seizure. His is benign and we have been extremely lucky. He responded well to chemo which caused the tumour to shrink. He leads a full life with a busy job and lots of travelling.
I wanted to say that he took a long time to feel fully recovered from the seizure and adjust to the medication. Probably around 2 months before he was back at work and feeling fully well again. Your body has been through a lot and needs time to recover. He takes levitiracetum (spelling?) daily which is medication to prevent seizures and ramipril for his blood pressure. He couldn't drive for 18 months but coped really well with that.
Good luck with whatever the future holds, I fully appreciate what a stressful and worrying time it isFlowers

TheVanguardSix · 19/05/2022 22:53

OP you mentioned resus. Did they have to perform CPR on you/use a defibrillator?