First of all I want to apologise for barging in on your group as I dont have epilepsy (I don't think so anyway!). Also if my question seems stupid or offensive in anyway, sorry again, I'm just trying to find some answers.
I had a seizure when I was 18, it was closing time at a quiet bar, I'd had a few drinks but not much as I'd arrived late after travelling. I was tired, had been a long few days. I remember sitting speaking to my friend then feeling strange, very difficult to explain but I just knew something wasn't right.
The next thing I knew I was coming round having apparently had a 30 second seizure, I'd wet myself and to be honest that was all I was concerned about at the time. The medics arrived and I was checked over and due to living very rural I was sent home for the next two days before going to the hospital for all manner of checks.
The next two days I was beyond exhausted, I mean really really drained. I think I slept more that two days than I do in a week.
Anyway, my GP having looked over tests told me that having a seizure at my age isn't that unusual that these things can happen for no apparent reason and it's no reason to believe they will happen again.
So, here I am 10 years later and I'm trying to put in to words something that has happened many times since that day.
Maybe 6 times a year or more I have experienced the exact feelings I had before the seizure. I dont know how to explain it other than some thing isn't right, my head feels wrong, I need to stop what ever I'm doing and slow things down, breathe carefully, try to stop working my brain too much and just very slowly and carefully wait for it to pass. Sometimes its followed by a loud ringing noise and sometimes the world begins to go black as if I'm about to faint, but it's more than that, something other just feels wrong.
I'd only once had that feeling before my seizure, I was with people and didnt want to say but it was building up so I said I was just nipping to the toilet and tried to get out of the room, I made it halfway up the stairs and had to stop, a friend found me and I was sweating profusely and though i was going to pass out, we just joked it was a hot flush and that was that. Other than that I'd never ever had that feeling before the time I had a seizure.
With that feeling It feels like I'm on the verge of another seizure, I dont know if that is just me panicking because of having had a seizure or is this something other people experience? Maybe I'm going mad!
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Ynwa92
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Have you ever told a doctor about these feelings I get them them to like something very bad or dangerous ( Risk to Life sort of warning) but no matter what you can't explain it with me I throw it in the"aruors" category and thanks to my curse that my aruors only work 1% of the time if there really funky doctor still takes note . Aruors are supposed to be handy warnings for people with epilepsy even though the aruors are not very nice and mainly affect your taste and smell if you have working aruors you can get in a protective place to have a epilepsy fit but if your aruors miss fire like mine and are a pain if you get one you still pay attention take note you had the thing and then do safety measures"just incase this aruor is actually right" and next time you see you doctor hand over your record.
In regards of what to do have you had a EEG? Or seen any type of consultant.
Also this might be a stranger question do you suffer from headaches alot and especially during a thunderstorm ?
Very common not to be able to discribe seizure feelings. Ask your GP to refer you for testing for neurology EEG, seizures can reoccur later, so need to rule it out print off list of types of seizures from epilepsy action and take to GP. Lots of different types of seizures. All the best
You aren't going mad! You should see a doctor and get yourself referred to a neurologist. Write down what happens, and how you feel, just like you have here, and also write down when they happen, what has happened before and what happens afterwards. Give them as much detail as you can. It may be difficult to get an appointment to see a doctor at the moment, but it is the sort of thing you can discuss over the phone. It'll probably take waiter a while before you get to see the neurologist anyway. Write it all down, and then when you finally get to see the specialist you'll be able to give them chapter and verse. Above all, don't get upset about it! Good luck. Like everyone else who sees your comment, I'll repeat, you aren't going mad!
I'm no Dr but have had Epilepsy for 39 years now along with having a brain tumor and 2 brain surgeries in 2007. It appears you might be existing an AURA. Educate yourself on them. I get them all the time before a seizure. They are different for everyone. Except mine start off feeling like an orgasm in my stomach rises to my throat i produce a salty saliva that fills my mouth they last 30-40 seconds however if they go into a seizure I'll throw up without any knowledge until I find it and have to clean it up
I had something super similar. I couldn't describe what was happening so I started writing it down every time and kept track of when and for how long. It was similar, I felt like I had to focus on breathing and on my heart (at first I thought I was having some sort of heart problems), sometimes I felt nauseous, things would smell or taste weird. I think they were partial seizures and were not followed by generalized seizure until one day on the bus when one generalized and I woke up in an ambulance. The doctors did all the scans but didn't find anything but since I have started Keppra I haven't had any of the weird partial seizures or any big generalized ones either. I would suggest that you start taking notes about when they are happening and for how long and when you have a bit of data take it to a neurologist (I tried going to my general practitioner first and they told me I was stressed because I was too ambitious and sent me home). Hopefully the neurologist will talk to you and help you sort everything out, but if worse comes to worse, if you have another big seizure showing them the notes will probably help them give you a diagnosis and get you started on meds. Good Luck!
You aren’t going mad! It perfectly reasonable to associate strange feelings with seizure type feelings. I freak out any time I get dizzy! Ultimately you won’t get proof that this is seizure related unless the feeling eventually progress to a partial or ‘full blown’ seizure. What you describe sounds like a bit of an aura, but obviously theres no solid proof, which I bet is frustrating. If youre concerned your options are perhaps to log when you have the feelings for now- what time of day, how you felt, any sensations, how long it lasted etc,had you been drinking were you feeling tired that day, was your blood sugar low etc
Or of course talk it through with a doctor and arrange an EEG test. EEGs wont always show epileptic activity (even in people who have regular seizures. If you are able to talk it through with as much info as possible (logging things...) it will give you a better starting point for diagnosis.
I can understand that you are looking for answers to your questions. And you don’t need to apologise for asking questions here.
Having a seizure of any kind is a scary experience and it’s good that you had follow up checks for this. As your doctor mentioned anyone can have a one-off seizure and epilepsy isn’t usually diagnosed unless you have more than one seizure: epilepsy.org.uk/info/what-i...
It sounds as though you’ve had a tough time with these symptoms you’ve been experiencing. It’s possible these symptoms are related to seizure activity and they could be a type of focal seizure: epilepsy.org.uk/info/seizur.... But there are other medical conditions that can cause symptoms similar to epilepsy.
If you haven’t already, it would be best to talk to your doctor regarding your symptoms. If your doctor thinks it could be epilepsy, they should refer you to an epilepsy specialist for a diagnosis. We have some information about diagnosing epilepsy here: epilepsy.org.uk/info/diagno...
It could be worth keeping a diary of symptoms you are noticing to show your doctor. This can help to get an accurate diagnosis of what is happening: epilepsy.org.uk/info/diagno...
You’d be welcome to call and speak to us at the Helpline if you want to talk any of this through: epilepsy.org.uk/info/suppor...
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