Epilepsy or not epilepsy?: I've had... - Epilepsy Research UK

Epilepsy Research UK
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Epilepsy or not epilepsy?


I've had only ever had two grand mals 3 years apart both associated with a lacunar stroke and a weakened vascular system.

Suspect lesion led to brain biopsy - all was benign but multiple other lesions remain - "no diagnosis possible" !!!

Is this really true Epilepsy or have I just been unlucky with the two episodes. I was out cold for 6 mins for the second one. The first one I managed to remain conscious.

6 Replies

I have epilepsy caused by it think my sticky blood maybe worth taking a look at the sticky blood site or the Hughes foundation site

Wishing you well

CCSP-27 in reply to daisyd

I will indeed thank you very much !

Hi, I am new to the site and noticed you haven't had many replies. I would hope that you have been seen by a neurologist. Best to go back and get clarification from the consultant and/or an epilepsy nurse. There is plenty info on the web especially the epilepsy organisations and NHS. You really need to have good discussion with a professional and insist on it.

All the best

CCSP-27 in reply to TMarisk

Hi there and thank you for your kind concern.

I've seen 2 Neuro Consultants - first one was very keen on over medicating and I quickly gave him short shift and opted for the NHS one whom I get on with very well.

Is it not the case of one strike and it's a mishap but 2 or more and it's Epilepsy ?

It's true to say I'm not happy with this and subsequently being kept on the high doses of AED's !

Hey ho my research continues .....I'm also researching Pernicious Anaemia (recent self diagnosis and then confirmed with tests) and Hashimotos Thyroiditis. I'd need to give up my day job and become a full time researcher 😁


andy_fin in reply to CCSP-27

My understanding has been epilepsy basically means 'someone who has suffered from more than 1 unexplained seizure'. 2 people with epilepsy could have completely different causes. Kinda like IBS it's a catch-all term for the symptoms not description of the cause.

My Neurologists advice was "If i were you i'd just keep taking these for the rest of your life or until you have another seizure and then we'll reassess."

You've got to consider if you're prepared to stop taking the AEDs and risk the consequences if you're wrong. That's a decision that is different for every person.

Hi, am in the library so can reply today, so apologises if ever I don't reply/comment. I am very fortunate as so far, 'touch wood' mainly get 'frozen/conscious absences. Never the less it seems to cause symptoms for days and severe exhaustion.

You are obviously quite bright and that's helping you cope with this frustrating situation. I just feel a little misunderstood at present; I suppose for the individual this is a big, shocking thing to have to deal with, but for the professional its an everyday common thing.

I am very impressed you are maintaining a full-time job, that's another frustration for me, but hey I have no reason to complain, there are many people in a worse situation. Just need to find a way forward.

Best of luck

P.s. presume you've seen the US site Epilepsy Foundation?

Take Care


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