Advice please: Hi all, I'm still coming to... - Epilepsy Action

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Advice please

Debsborah profile image
6 Replies

Hi all, I'm still coming to terms with the epilepsy diagnosis & could do with some advice please.

Both seizures I've had have been when I've been outside & each time an ambulance was called - they took me to a & e where everyone was so kind, but I doubt I needed to be there and so was talking up valuable resources. The problem is, it takes a couple of hours for me to come round & start functioning again. If I don't go in an ambulance, I'd be lying in the street with my hubby until I come round, no one wants to see that. What do you do. Thanks

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Debsborah
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6 Replies

Have you been in contact with a local neurologist? They can give you meds to help manage your seizures depending on which ones you may be experiencing. Sounds you may be experiencing complex partial seizures. Many complex partial seizures are a sign of damage in the left or at times the right temporal lobe. If your speech is affected following a seizure that is a confirmation it is your left temporal lobe. In order to narrow down the answers you may want to go through an EEG or an MRI testing to get deeper into the matter. The better understanding the better direction you can go to manage and even decrease your seizures.

Debsborah profile image
Debsborah in reply to

Thanks for your positive words, I saw a neurologist after the 1st fit & had a sleep deprived EEG, a standard EEG & MRI scan - nothing showed up. Neurologist explained I'd had a tonic clonic seizure.

Debsborah profile image
Debsborah in reply to Debsborah

Now on medication & see the neurologist on 20 Nov

in reply to Debsborah

Tonic clonic seizures. An EEG can only go to a certain depth of the brain, as an MRI can get deeper. A CT scan is another option, along with Bio Feedback. Changing eating style may help you out too. One thing I have learned through my neurologist is to avoid MSG. They are one of the food sources which can easily trigger a seizure. Stay strong and patient. An answer is coming your way. 😊

Debsborah profile image
Debsborah in reply to

Thank you so much, it's a very scary path at the moment - I need to have a word with myself & woman up x x

EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Hi Debsborah

Thank you for your post.

When first diagnosed with epilepsy it can take time to come to terms and find ways to help yourself. Talking to others in a similar situation can help, so I hope you hear from others in this community.

Following a seizure most people are exhausted and just want to go home. On the whole most people will get a lift from family, friends or a taxi. Like you, most will want to avoid going to A&E unless it’s really necessary.

We have some safety advice for people with epilepsy that you may find helpful. This information looks at possible risks in and outside the home. epilepsy.org.uk/info/daily-...

It’s good you are seeing a neurologist. They can review your treatment and look at possible reasons for why your seizures are still happening. They may suggest increasing your epilepsy medicine or at some point trying a different epilepsy medicine altogether. epilepsy.org.uk/info/treatm...

If it would help to talk to us about your epilepsy, please feel free to contact our helpline team directly. The Epilepsy Action Helpline freephone 0808 800 5050 is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm. epilepsy.org.uk/info/suppor...

Regards

Diane

Epilepsy Action Helpline Team

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