Daily seizures

[jace_nicolas]

Hi all!

Today I googled which apps were best when it comes to managing seizures and this app was top three!

I’ve had weird feelings in my head for as long as I can remember:

High school: brief but recurring episodes of feeling robotic, and like I wasn’t “real” but in a movie. I took ibuprofen daily with no success.

College: episodes evolved into “wavy” sensations in the head that would make speech confusing to me with a frozen look of disgust on my face. People avoided me during these times and I just took space until I felt better. I also thought I was psychic and spiritually gifted due to overwhelming feelings of deja vu.

Two weeks ago: full blown seizure at work with an aura and inhibited muscle movement right before it happened. I went to the ER twice in the same week, with the first discharge papers blaming anxiety, while the second ones said I simply fainted. Ever since then I’ve had a seizure every other day, and I am trapped at home. These seizures have been witnessed by coworkers and family members, so I know I am not just passing out, especially with all my blood work in a healthy range.

I’m currently waiting for a 72-hour EEG scan, but my functioning and critical thinking has taken a major dive. I’ve had to leave work, quit college and stop driving. My life has taken a major turn. But for some reason many doctors think I’m lying to them. Often times I’m told it’s just anxiety, but for my initial college years I was misdiagnosed as bipolar and on Lamictal for mood swings. Lamictal actually helped me greatly, and I now believe it was successfully treating my partial seizures I’d always had, but I was taken off last year, and now I can’t be started on meds again until after the EEG. Apparently a diagnosis needs to be made before I’m allowed to start feeling better, even when Lamictal greatly improved my life in the past.

I’ve been told EEGs can come back as normal even for confirmed epileptics. What will happen if my test comes back normal? Will I still receive help in putting my life together? Not to mention if I keep having seizures and they’re labeled as non-epileptic I will most likely have to go on disability if this pattern continues.

I’m 24 and not losing hope, but everything I worked hard to achieve has been snatched away from me, and I don’t even have a timeline for what to expect with next steps. How long does it usually take to become stabilized on medication once you are diagnosed? I’ve left my job, but my bosses have already told me they will rehire me as soon as I am well enough to work again.

Any tips related to seizures is much appreciated. It’s relieving to know people can relate.

Thanks for all your help!

Jace

[PennyRed]

You say your doctors don't believe you. Have they ever seen one of your seizures? If not get your family to video them. This will help towards a diagnosis.Good luck and don't give up.

[jace_nicolas in reply to PennyRed]

It’s more so when I go to the ER. Even when it’s documented as a seizure they try to pin it on something else. When I know they just want to be able to tell me what to do to feel better. It’s frustrating. But yes I’ve managed to get two seizures on film.

[Comedy in reply to PennyRed]

So sorry you are going through this. The video is a great idea but even if you could get coworkers or family to write an eye witness summary. Several would be good. That would help the doctor. My son looses consciousness so I always provide a verbal account to the doctors and in a seizure log. . When seizures happen people around you are anxious to help you and may not remember to video you.

[PennyRed in reply to Comedy]

I agree a seizure log is a very good idea. I compiled on for 6 months after my husband had a stroke and subsequent epilepsy, it helped the doctor to see the frequency of the partial seizures and then he prescribed Lamictal which stopped them almost at once and he's now in a much better place. My friend of 30 + years has epilepsy and she has given me lots of tips. Hope you are coping OK yourself as it's hard for someone to watch their loved ones go through it. Best wishes to you and your family.

[Hidden]

Next: MR scan + Intensive Monitoring. It's necessary to pinpoint the seizure souce. Monotherapy drug treatment before and after surgery. Lamictal's a drug of choice.

[jace_nicolas in reply to Hidden]

I have an EEG confirmed for September 27th-30th 👍 I’m just hoping it shows what’s wrong. I heard that it doesn’t always show up the first time

[Hidden in reply to jace_nicolas]

Everybody produces a different EEG result. There's no telling where your wires are crossed. No MRI yet? Get a second opinion asap. especially in the UK. Don't let them leave you hanging around. Be prepared to travel if necessary.

[jace_nicolas in reply to Hidden]

I live in Connecticut in the US. Doctors are at full capacity near me due to covid, so it’s already a struggle to be seen. Here’s hoping I won’t have to travel too far, I cannot drive myself and I’m already traveling an hour for this test.

[Hidden in reply to jace_nicolas]

Didn't see that you're in the US. Health care's wrapped up in a completely different to Europe. Here in Germany we've aa right to treatment the very next or the same day.

[jace_nicolas in reply to Hidden]

Oh yes, it’s been quite the hassle for me. I had a grand mal seizure at work almost two weeks ago now, and all my coworkers witnessed it. I was able to be seen by a neurologist right away, but the EEG appointment could not be expedited. The 27th was the soonest. I know I don’t have a brain tumor, but I have a really bad feeling about all this. To be honest I am scared of going to sleep and not waking up, but there’s nothing I can do but wait. I just gotta keep my head on and not overthink, but it’s hard not to when everything in my life changed so dramatically.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Jace,

It can be really helpful to share support and information so its good you've started to hear from others here. And I'm pleased you've heard positive things about our site. It sounds as though things have been tough for you though. We know that living with seizures and uncertainties about a diagnosis can be hard.

It can take a while to get an accurate diagnosis for why seizures happen. (epilepsy.org.uk/info/seizur... But getting the diagnosis right is important to get the treatment right for you.

As you mentioned EEG tests (epilepsy.org.uk/info/diagno... can come back normal if you're not having a seizure at the time of the test. But as well as EEG and MRI tests your doctor will use information you can give them about what happens during a seizure to help to get the diagnosis right.

I'm not sure from your post if you're based in the UK or not. Our information is based on what happens in the UK but it will give you a guide about what's involved in diagnosing epilepsy: epilepsy.org.uk/info/diagno...

It can be useful to keep a diary ( epilepsy.org.uk/info/diagno... of everything you're noticing as this can also help to get an accurate diagnosis.

There is treatment and support available whatever your eventual diagnosis. We have information about what's available in the UK (epilepsy.org.uk/). But if you live outside the UK you can check what support organisations are in your country through the International Bureau for Epilepsy website: ibe-epilepsy.org/

How quickly treatment starts to work can vary from person to person. But the aim of treatment for epilepsy or non epilepsy seizures is to get as good seizure control as possible. It can be helpful to know about possible triggers and how to look after your wellbeing. I'm linking you to our wellbeing information in case there is helpful information here for you: epilepsy.org.uk/info/health...

I hope this information is helpful.

Regards

Mags

Epilepsy Action Helpline Team

[Hidden in reply to EpilepsyAction1]

ALL MUCH TOO LONG-WINDED.

[Hidden]

Your neurologist should have his/her own EEG. They're cheap to lease.

Blood + Examination + EE in one hour

Exam (5 minutes)

urmc.rochester.edu/MediaLib...

EEG: Max. 40 minutes

A well organised practice can overlap patients.

If your MR scan reveals any abnormaties which may be the cause, Intensive EEG monitoring in a hospital environment. Basically:

Hook you up to an EEG unit on wheels

Reduce meds

24 hour seizure watch

EEG will determine whether the MR scan "abnormalty" is the cause

Surgery

In the US way to many patients are kept on meds for life. Cost-effective? No. The drug producers win. Money spinner.

Most forms of epilepsy are caused by a malformation of some kind. Surgery. You'll have to stay on the meds but your seizures will cease.

[Jagobago]

I started having seizures 6 months ago . The first caused me to fall backwards and the back of my my head was injured by hitting a metal plate rack.4 more seizures followed with causes put down to drops on blood pressure. Only after bringing my wife to describe my seizures , and together with an ECG reading showing a brain scar from the first fall did the consultant diagnose epilepsy.

The medication worked straight away and has been successful since , though side effects have taken a lot of getting used to . The primary advice is get someone to give the consultant a visual description of your seizures.