Can someone please tell me what is wrong with me?

[Cadela]

I can’t cope anymore!

I’ll try to condense this - I was diagnosed with epilepsy in Feb of last year, focal aware and complex partials. Have had 2 tonic clonics in that time.

Meds don’t work, I have on average 1 a day, but sometimes can be up to 10. I take Briviact, Tegretol, Clobazam and Propranalol

Ive started having horrendous heart palpitations, to the point I feel I can’t breathe and they bring on a seizure. It feels like I’m about to die. They last for 30 seconds ish and my hands and feet go numb/tingly and I feel very faint. Have been to A&E during/after.

Had a quick EEG - nothing. Am now waiting for a 24 hour EEG to see if it can catch one.

Does anyone know if I’m going to drop dead imminently or offer anything to ask my drs? I feel so unwell all of the time and the stress is causing more seizures (of course!)

Oh dear, that sounds awful. No advice, sorry 💐

Can you afford to see a specialist privately? Often they will at least talk via zoom etc

Did all this just come out of the blue?

Completely. One day I was fine and the next I had a seizure and spent a week I hospital.

The heart palpitations are new though.

I probably could, I’ve been looking into private MRI to check my heart because it’s worrying me so much.

We have a Spire hospital quite close - anyone have any experience with them?

I have experience with spire, they were excellent and was seen within days (non emergency)

How old are you?

Go to your GP, explain how anxious you are and see if they can hurry your hospital appointment along (worth a try ay least). And contact Epilepsy Action for general support and advice.

We've used Spire for my DDs tonsilectomy. They were great. Quick, professional, and she was seen by a Consultant the same week I enquired, she was booked in for the op a couple of weeks later. Very easy.

35, always been fit and healthy until suddenly developing epilepsy.

How did your diagnosis of epilepsy come about? Was it purely based off of having a seizure?

have they carried out MRI’s or anything?

I have no medical training whatsoever but those symptoms sound like they could possibly be a reaction to one of the meds you are taking?

Yes just suddenly started having focals. I’ve had an MRI and an EEG which both came back clear. Absolutely no idea what caused it.

Have you has epilepsy diagnosed via an EEG or just because of the seizures. The fact you aren't responding to medication having stress induced seizures and are having non epileptic medical symptoms toosbd again of the blue onset sounds like it could be you and suffering from non epileptic seizures. You can have both but so many people that have previously being diagnosed as epileptic turn out to actually be having non epileptic seizures and the medication is pointless just makes you feel worse.

I was wondering the same thing. If the MRI and EEG are clear, it could be functional neurological disorder (FND if you are googling). My son is in the process of diagnosis of FND or epilepsy.

Do you know if anyone offers a 7 day ambulatory EEG in your area? They fit you with lots of thingies and you go home with the machine and your brain activity is monitored for the whole time. They are a PITA but better than doing that in hospital.

If it wasn't for the fact you have epilepsy, these sound exactly like panic attacks that I've had over the years, often coming out of nowhere.

I was having palpitations, and after a very long journey down some medical rabbit holes, I was diagnosed with asthma. Not everything is as it seems sometimes.