New here and suspected epilepsy

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albie187

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Hi everyone,

I'm new here and relatively new to seizures and epilepsy.

I had my first seizure less than a week ago and have not yet been diagnosed with anything, but my doctor suspects epilepsy. I have had an ECG to check my heart (fine), blood tests (results tomorrow) and have been referred to the seizure clinic in my local hospital because I 'meet their criteria' for a first seizure/new epilepsy.

I was hoping if I posted details of my seizure then I may get some responses as to whether anyone recognises my symptoms and/or thinks it may/may not be epilepsy. I recognise that you're not doctors (though maybe some people here are..?) but feel you will probably, collectively, have a wide experience of seizures.

I will wait for some replies before I post details of the seizure in case you all think it's a stupid idea and I should keep that info to myself.
 
Hi there and welcome! Don't feel stupid! Before my EEG diagnosed my episodes as seizures I thought I was having a stroke ;) so never think you are stupid. :)

I hope you find the answers you are looking for!
Brandi
 
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warm welcome albie187 and huge hug,

no need to feel stupid around here........gosh we all got 'a' story.....so fire away ;)

very glad to hear they are doing some tests and hopefully soon you will know more..

keep us posted...and share, share away....we here for each other.....

My Son of 27 has E....
 
Hi,

Don't feel stupid. Having a seizure is a scary thing.
Everyone here is here to tell what we have gone through, to listen if you need to rant. To help in anyway we all can.

You can list your symptoms if you want to, someone on this forum might the same symptoms.

I hope you will free to ask any and as many questions as you want.

You might want to start a diary, listing seizures, time and how long they last along with any triggers.
 
Thank you!

I just feel stupid because we don't know yet if it is epilepsy, and everyone might read the story and just think it's something entirely different and nothing to worry about... And boy, have I been worried.

Okay, so here goes.

It was in the morning, I had been awake 10-15 minutes. I wasn't overly tired, although I had been more tired than usual the past two weeks or so. I was making breakfast in my kitchen, no one else was there the whole time. I lifted hot porridge out of the microwave and then don't remember anything for maybe, around 30 seconds. I didn't fall on the ground, so seemed to have stayed conscious, but have no memory. When I 'came to' I was standing at my sink, a few feet from the microwave, with hot porridge stuck to and burning my hands, and I was fumbling to get the cold tap on. I was disorientated and my hands were burnt. Within about 1 minute I became incredibly dizzy, nauseous and was sweating a lot. I had to pull a chair over to the sink and sit with my head resting on the sink and my hands under the cold water. It was 20 minutes before I could even lift my head up because I was so dizzy and nauseous. It was then a further 10 minutes before I started to feel okay and could stand. In the first 20 minutes I didn't have a phone with me, but if I did I would have called an ambulance because I honestly thought I was dying.

When I could walk again I phoned my doctor and they had me go in for an assessment. She said it could be my heart or brain and checked blood pressure, heart rate, pulse etc and tested for a stroke. The next day I was sent for an ECG and blood tests. The ECG came back normal and I get the blood test results tomorrow (but assume they came back fine as dr said she would call if there was anything noteworthy). The rest of the day I felt 'off', not quite myself.

I haven't had any noticeable seizures since, but have had a few other weird symptoms, that I am not sure if they are symptoms, or just me being paranoid. I've been tired a lot. One morning I woke up with spots of blood on my pillow, presumably from a small nose bleed. I've also had deja vu a few times (3 in one day), and smell a weird smokey smell every now and then which I have no idea where it's coming from, and it could just be something in my flat (I'm in student halls).

So I guess that's it...?
 
I should have added that I appear to have thrown the porridge about a bit, it was all over the cooker and the way my hands were burnt suggests that it wasn't just a case of dropping the bowl.
 
Sounds like a complex partial. Those are what I get... You are in the right place, to let the Dr's do their thing and do the tests that they need to do. Is there an EEG scheduled?
I lose track of time, as well. Go "out" in one room and come to in another.
You will get it figured out, I am sure. And it is normal to be afraid of the unknown. You have friends here and we will support you through this. :) But it does sound like a complex partial, to me.
 
Thank you. It's not the answer I am hoping for, if I am to be honest. But it is reassuring that there are other people with the same thing that I can talk to. Epilepsy sounds incredibly scary to me and I'm scared it's going to change my life. I'm only 22 and half-way through a Masters degree.

I don't have an EEG scheduled yet, but am waiting for an appointment with a seizure clinic within the next 2 weeks and assume they will schedule one.

Is it common to not have another for so long? I imagined I would have them a few times a week if it was epilepsy and have been almost constantly expecting it to happen again.
 
My Son 23 when diagnosed, now 27, taking little longer to complete college, but he DOING it....

You already 1/2 way through your masters you bright young cookie you....!!! Well done...

Keep spirit high.......you can and still will make all your dreams come true ;)
 
Thanks Chaz1, that's very kind of you. I'm glad your son is getting through college. I just have to complete a 2 week placement (started today), 4 more weeks of class, 3 essays and then I can go home and do my dissertation from there over the summer (I'm from Northern Ireland but am studying in England), so I will be more relaxed once I can get home to my family.
 
You can do it!! Keep your eyes on the prize! Although I'm glad I finished my masters prior to the diagnosis. But, you can do it :)
Mine started out a week or two between seizures and then progressively got closer together. But, everyone is different! And, everyone's seizures are different. The important thing is that you are getting the studies that you need in order to find the answers. Keep your head up!! :)
 
Keep a diary of all the sensations and smells and all out of norm, share with your specialist and keep taking notes. It will help for future appointments if you have these, I promise you.
you got lots on in near future (masters at 22, hello :)) , hard as it may sound, hold back on the partying and rest and sleep.....and eat well.....for these few weeks, both critical...

And picture the Northern Ireland coastline when u gets stressed, Belfast girl myself...
 
A BELFAST GIRL YEO :)

Ah, you're funny. I don't party at all, or drink, smoke or take any drugs. I cook most of meals myself and eat pretty healthy I think. I think my problem is sleep mainly, I can never get enough of it and always feel tired.

Thanks for all of the advice guys, I've been keeping a diary and will continue to do so. And I'll keep you updated as and when I get tests and results.
I see my doctor again tomorrow and will get my blood test results.
 
hi albie187!

I am new here too. Just diagnosed with SP and CP in November 2012...I had the deja vu and would smell stuff that did not exist for many years. Never knew these were even symptoms until I saw the neurologist--they were just a normal part of my life (or so I thought! lol).

I am glad you are here...a wealth of information to be found!
 
You can do it.

I have partials and complex seizures, and I worked outside my home over 22 years.

epilepsy is the diagnosed when someone has more than one seizures.
 
Hey albie I feel for you its so good that you wrote to these fine people they all seem incredibly warm and caring. My seizures are more drop on the floor dramatic variety but I too experience deja vu more than I think the average person does. Hang in there girl and hopefully we will both get the answers we need.
 
Hey Albie187,

I was in exactly the same boat as you when I joined this website. It was a very early morning when I had a tonic clonic last April which scared me to death and left me tired for days after. ( I didn't know whether it was a combination of general tiredness and paranoia too!) hehe. I neither drink nor smoke and am a healthy athlete, so it especially freaked me out!

Anyway, since then I was referred to a first fit clinic where a neurologist will talk to you about what happened before, during and after the seizure etc ( if you can remember!I couldn't.lol). It was then that I had my ecg and a physical neurological assessment which both turned out fine.
If they think that it could be epilepsy the neurologist will refer you for an eeg. This is when they put electrodes on your head to determine your brain activity. After this, dependent on the results ( or also the fact that you are a young adult and developing seizures) they may do an MRI. They did with me since I was 24 and with no known family history of epilepsy.

I haven't had any seizures since that I know of ( touch wood) and my MRI was clear. However, on my EEG they found some abnormalities present in those with epilepsy, so the neurologist has kept me on his patient list and I have got to go back to see him again in a couple of months.

Any questions about the next stages just ask :)

P.S. What are you studying and where?

Take care :)
 
Thanks RobynM.

I've been reading up about the EEG since I'm assuming they'll do one, no loss if they don't.
I got my blood test results back today- all clear. And I now have my appointment with a neurologist- next tuesday.

Today and yesterday I've been seeing black spots too, my doctor checked my blood pressure again, but it's fine. Not sure if this could be a symptom or not.

It's a Masters in History at the University of Bristol.
 
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