Diagnosis of epilepsy

[Charpod95]

Hi I was wondering how easy or hard it is to get diagnosed with epilepsy? I have seizures for the last 12 years but only just got an appointment with neurology

[ciley]

you mean you went to p but no-one diagnosed? what did thry do for you? i m now depressed becaiuse gps refused me low dose valium, where i a least had fighting spirit~

[EpilepsyAction1 Partner Epilepsy Action]

Dear charpod95

How quickly someone gets a diagnosis is individual but 12 years seems a long time. There are a number of conditions that can cause symptoms similar to epilepsy, so it can take a while to diagnose.

In the UK, when someone is having unexplained seizures their family doctor usually refers them to an epilepsy specialist at the hospital. There are guidelines within the NHS on how quickly someone should be seen by a specialist.

epilepsy.org.uk/search/goog...

Now you have your appointment, I wonder if you will find our information on diagnosis and questions to ask helpful epilepsy.org.uk/info/diagnosis.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050. We are open Monday to Friday 8.30am until 5.30pm.

Diane

Helpline Team

[mearsery79 in reply to EpilepsyAction1]

I have a diagnosis of epilepsy but it have been very hard to catch the with he eeg which I have had three times

[EpilepsyAction1 Partner Epilepsy Action in reply to mearsery79]

Hi there -

Its good that you are getting closer to getting a diagnosis of your symptoms.

Sometimes there aren't changes on someone's EEG if there isn't a seizure happening at the time of the test. In this case your consultant will base their diagnosis on your symptoms including what happens before and after you have a seizure: epilepsy.org.uk/info/diagno...

Keeping an accurate diary can really help with this: epilepsy.org.uk/info/diagno...

We also have information about MRI scans if you need this: epilepsy.org.uk/info/diagno...

Regards

Mags

Epilepsy Action Helpline Team.

[Charpod95 in reply to EpilepsyAction1]

Hi thereCharlotte here once again !! So I've had my first neurologist appointment and I was booked in for a mri last week but the patient transport ambulance turned up to take me to my appointment and I had a really bad seizure/fit I was found unconscious on the bathroom floor froffing out of the mouth apparently and I suffered second degree burns on my hand,wrist,and foot so Im now waiting for a new appointment for an mri but I am now on 'lamotrigine' epilepsy medication which is good and I have a letter stating that they have made a diagnosis of epilepsy ... And that's without even having a mri or anything yet ! But I'm at a sigh of relief because for years no one has ever believed me that I have fits/seizures! Apart from the few close people that actually have witnessed them. Gp has called them non epileptic seizures before and says it's because of my mental health etc but I know that that can't be as I'm not stressed about anything I've had seizures when I've taken my mental health meds and also when I haven't taken them and I also have seizures when I eat citrus fruit like oranges,lemons etc ..weird ay...

[EpilepsyAction1 Partner Epilepsy Action in reply to Charpod95]

Hi

Thanks for your message. It sounds like you have had some awful injuries with your seizures. I can understand how getting a diagnosis that makes sense to you must be a great relief: epilepsy.org.uk/info/newly-...

It can sometimes take neurologists a while to be sure whether a person is having epileptic or non-epileptic seizures. epilepsy.org.uk/info/diagno...

I really hope the lamotrigine works for you.

You might want to look at our wellbeing information for some extra mental health support: epilepsy.org.uk/info/health...

Kind regards

Cherry

Helpline team

[LaineyC9599]

I only had two seizures before it was investigated and diagnosed as epilepsy (as stress-related epilepsy as they tested all other triggers). I hope you get to the bottom of your health issues soon xx

[mearsery79 in reply to LaineyC9599]

I think I have stress related seizures but I also had two head injuries only two weeks apart.

[Charpod95]

Hey everyone!! Thanks for your replys!! What I meant to say was ..I've been having seizures for last 12 years at least 3 a week and most of them I go completely unconscious . I saw a neurologist for the first time last week and the reason it's taken 12 years is that I also have a number of other conditions that make it extremely hard for me to get out if the house. I have autism, and ptsd and copd will the the epilepsy but I did see a neurologist and she said it's definitely epilepsy well thats what she definitely thinks it is . Who h is good because I'm fed up of all inexperienced doctors saying oh there nonepileptic seizures!! But I have a head MRI scan booked for this week so fingers crossed !!

[ciley]

glad you are getting somewhere~i am to book appt with psychologist~make that psychiatrist~the man i came to as an old friend, does not like me speaking~he has been a hermit before but i have not~its so cold and rainy dark~~pray for the light