Epilepsy or NEAD?

[123willo]

For the past 3 years, my wife has been suffering with a higher frequency of 'epileptic type seizures'. 30 years ago she had surgery to treat her brain aneurysm and bleed. This TBI left her with epilepsy that was successfully suppressed with only occasional seizures up until a point 3 years ago.

Then, quite suddenly, her seizures became far more frequent.

She had CT scans analysed that showed that there had not been a further bleed at the original site etc etc

She cannot have an MRI as the aneurysm clip is metal but she also has a pacemaker.

The neurologist back 3 years ago ordered a 48hour EEG but unfortunately my wife had no seizures during the period.

The neurologists, when you get to speak to them clearly want to just shift you off their books as non-epileptic, although they won't actually state that.

So, I'm thinking there must be many in the same situation who can provide good advice as to how I can get a definitive epileptic/nonepileptic diagnosis and who I could approach to get such a diagnosis.

As far as I'm concerned, this epileptic/nonepileptic question has to be answered before a successful way forward can be achieved.

Any advice would be gratefully received.

Thanks all

[New_beginning]

We're only at start investigating Epilepsy, for my husband TBI sustained 18months ago, it's been my fear going down this path

[tamarisk19 in reply to New_beginning]

In the years of observing my wife's seizures, I feel that there is a mixture of epileptic and other seizures now but a certainty is needed, especially as her seizures were reasonably suppressed for so many years by the administration of epilepsy specific drugs such as tegretol and lamotrogine.

I don't know about you, but we have had 2 major difficulties in recent times. The first is the severe lack of neurologists covering the geographical area (West Midlands and Staffordshire), leading to very scarce appointments and also telephone consultations.

The last phone appointment we had, the neurologist was obviously keen to interpret our descriptions of the seizures as being classified as non-epileptic and possibly stress induced. For that to hold-up would surely mean that my wife would not have seizures when relaxed, sleeping or waking up and when entirely content?

Anyway, we have finally received a face to face appointment for November, but in the meantime I want to see if I can go somewhere to get a definitive, objective diagnosis, by scientific means to enable an informed conversation with the NHS neurologist.

If I find anything out New_beginning, I'll post it.

[New_beginning in reply to tamarisk19]

Thank you, I really hope my husband doesn't have epilepsy, I'm restricting his days to limit practical elements to log/ monitor, he's only 18months with TBI, little part of me just hoping part of early stage too, but scared of his presentation literally ticking the boxes.

I hope you get answers soon, yes I know all about absent professionals it's frustrating but I have no expectation now

[123willo in reply to New_beginning]

If I get some answers, I'll send you a post. I am sure there will eventually be improvements for your husband.

If it does turn out to be epilepsy , then it very probably can be suppressed with medication.

Have hope, always have hope.

[tamarisk19 in reply to New_beginning]

NB, you might be a little confused, tamarisk19 and 123willo are both me.

[Pairofboots]

Hi, I'm no expert in this area, but there are not that many causes of seizures. You have epilepsy, fever, some other event occuring effecting the brain. I may have simplified this, but in all cases, the causes need to be ruled out.

First consideration is to your wife's health and safety. If it is safe to do so, would it be possible to keep a video diary? Just thinking of other case's where the power's that be, don't take due diligence until they see and hear the evidence. Even a written diary with day, time and duration will build a picture.

I'm not sure if Headway would have any ideas, but worth having a chat with them. 🍀

[123willo in reply to Pairofboots]

Thanks PoB, I have an app that I complete during or after most of her seizures and am going to present the reports from it at every opportunity. As far as videos are concerned, I have a few but only of relatively minor seizures, as it is very difficult to become detached from the situation enough to take videos.

During our first recent appointment, approx 3 years ago, the neurologist suggested that videos were taken so, knowing that most seizures occurred in the bedroom, and at night, I bought a motion sensitive camera system.

Placed the system next to the bed and set to record triggered on motion. Got some reasonable videos.

Put them on a memory stick and sent them to the neurologists secretary in plenty of time for the next appointment.

I contacted them a little later to ask if the videos had been received and the reply was that the videos were in the wrong format and they were unable to view them.

I said that they should therefore download a free universal viewer from the Internet and they would then be able to view the videos. Couldn't possibly do that, contravention of IT policy.

Anyway, the upshot of that is to use a mobile phone. That takes a serious amount of detachment when you know that you should be providing emotional support and reassurance and ensuring they don't hurt themselves.

On an upside, I have discovered a product called clear o2, it is only low pressure, relatively pure oxygen, but if I give some of this during a seizure, it seems to reduce the severity and for the minor seizures pulls her out of them.

Anyway PoB, thanks for the suggestions, they are gratefully received.

[Pairofboots in reply to 123willo]

Hi, unfortunately they are right about the format problem, it is national policy that prevents systems to have programs added outside of IT policy. But they could ask the IT department if they have software that can read or convert the format.

[charlie5540]

Yeah I agree most specialists want to move you on for more tests and are not ready to answer direct or honest questions....

[charlie5540]

Try asking your go to refer you or her to the national hospital for epilepsy

[123willo in reply to charlie5540]

Thanks Charlie, I'll try that.