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Eleptologists
A MyEpilepsyTeam Member asked a question 💭

Mostly for UK people ,but US citizens feel free to chip in.In the UK ,do we have eleptologists or do they just exist in other Parts of the world ? Posted this 6 months ago as well

posted August 21, 2021
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A MyEpilepsyTeam Member

There is specialist Doctors who just specialize in epilepsy in the UK. Only a few major hospitals have them, usually those hospitals that have neuroscience units.

Your GP should have a list of such doctors and be able to provide you with an appointment to see one.

posted February 22, 2022
A MyEpilepsyTeam Member

My neurologist works at a hospital based epilepsy center, so all she does is epilepsy, but she never defines herself as an epileptologist.

posted August 25, 2021
A MyEpilepsyTeam Member

Eleptologist is just a term for neurologist that specialises in the field of Epilepsy, for North Wales, Merseyside and many parts of north England the specialists work out of Walton hospital as that is where the specialist Neurology centre is, my epilepsy nurse is employed within the Walton Neurology Centre but I see her at my local hospital for appointments.

posted August 22, 2021
A MyEpilepsyTeam Member

Yes and I eventually went private as the nhs at 26 and all my 20s and later teens were so rushed uninterested and not interested in the fact they had still not gotten my epilepsy controlled so although they are mostly private it changed my life. The first time I went the doctor was so shocked I was on the medication that they gave me. I was on 3 one i immediately had to get off as it is known to give you seizures with epileptics and the second one was not for epilepsy and he described it as if you had been taking antihistamines for bowel problems completely pointless and then the last one he said it was for a different type of epilepsy and obviously it wasn’t working after being on it for years and it also was known to interact very badly with the first one and give seizures. We had a process of finding the right drugs and it took some time and it is going to be a process of trying ones that you can react badly to but we found the best one that works for me and it was literally just lifesaving as I never thought I could be able to get controlled and never felt safe but nowadays I have no thoughts of feeling unsafe even because of the way things have changed. The way that my doctor treats me is so different than before and you have someone that is genuinely caring for you and wants you to be living your best life and always listening to you when all decisions on your treatment are made

For me it is expensive but it is worth every penny and I am so mentally happier than I was before too so I can’t recommend it enough!

My dr if you’re in London is at Cromwell hospital and I know he has other clinics in a couple of other hospitals most of them are like that

Ironically my dad is actually an epileptologist and he works there too but a paediatric one and began specialising in it before I was diagnosed! What are the odds haha!

All the best!

posted November 30, 2023
A MyEpilepsyTeam Member

Yes there is eleptologists in the UK. My own specialist was one until he retired. You can usually find them on the NHS listings, in the UK. What type of specialist have you got treating your condition?

posted August 21, 2021

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