So around the beginning of August, I had my first seizure. I thought it was no big deal, I mean, I had brain surgery a few days before, it's a given that there's going to be some side-effects.
The first one was fine, I was talking to a friend at my house who I hadn't seen in a long time, and at some point in the conversation I repeated the same sentence twice. I didn't think much of it, and neither did my friend, but all of a sudden I was tipping over the back of my chair and started, for lack of a better word, seizuring.
Obviously I don't remember the actual seizure, but I woke up fine on the floor, with a paramedic walking towards me. I felt well, I stood straight up to see everyone in floods of tears, except, y'know, the the paramedics, That wouldn't have inspired much hope. Everyone thought I was having another brain haemorrhage, which is very understandable as I hadn't had any seizures up until that point.
Then things got much worse. I've had seven seizures now (my last one was a week ago) and they have gotten progressively worse each time. I don't know how much you know about epilepsy, but before a seizure you an "aura" which is basically your body saying; "go somewhere safe, I'm about to start freaking out on you". For me this lasts about 1-2 minutes, which is brilliant as I have time to tell people what's happening, not to panic, and tell them what they should do, namely to make sure I don't hurt myself during the seizure.
What's not so brilliant is that now I've has seven seizures, and I can't find any explanation for the last one. Usually they happen because of one of three reasons;
1) I haven't drunk enough water
2) I'm very tired
3) I've had too much alcohol a day or two ago
But this time none of these things were in the mix
So now I'm doped up on a lot of medication, and I'm constantly on edge about having a seizure. So at the moment, it's ruining my quality of life. I have to find a way around this, because I'm not letting any more of this stuff take over my life.
As it turns out, no one has their "fair share" of troubles, and they'll just keep on coming if needs be.
But on a less depressing note, my surgery is working :D, and as my epilepsy was induced by either the stroke or the surgery, it might go away some day. So fingers crossed!
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B_S_A
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Your post sounds so familiar, and we are going through exactly the same dilemma as you right now. My husband, Steve had a burst aneurysm, followed by a SAH and stroke in October last year. He has been on Phenytoin since then without a seizure, but had his first on Good Friday, followed by the 2nd around 6 weeks later, and the 3rd a week ago last Friday. They haven't exactly got any worse, but he has no warning and it terrifies the life out of us both. And as you say, now we feel like we are "living on a knife edge" waiting for the next one. We have put the first 2 down to changes in medication (anti depressants and stomach problem medications) but not so sure about the last one.
Its interesting that you say you know when yours are coming, but he doesn't seem to. He had two episodes yesterday where he really panicked and thought "something was going to happen" but nothing did. The dose of the anti seizure drug was increased each time and each time we try to believe it will be the last, but as you say, you are living your life awaiting the next one
You sound so positive saying you wont let it take over your life, I wish Steve could look at it that way, but he struggles with his emotions and cant seem to cope with it all at all.
We are hoping to go to our first Headway meeting in Hull next week, and talk to some fellow sufferers, and I am hoping this will give him some more positive feelings.
I really feel for you, as if it is not enough to cope with the original problems, this comes along and kicks you when you are down.
But keep going with your great attitude, Im sure you will beat it, and I hope we can too.
So sorry to hear that, I can imagine it's very difficult to be positive when they happen without warning. The only saving grace for me is that I get fair warning, stay strong you guys.
My husband had 2 post seizures after his tbi then nothing for 2 years. He then had a 10 min grand mal seizure in march (increased his meds) then another 8 min one last week. I called his neuro rehab consultant who has increased his medication again but also referred him to an epileptic centre....not sure what to expect there but at least some action from the consultant. He has no warning and can't remember afterwards
I have been present both times and see seconds before that he freezes and looks upwards twisting his neck slightly. It's scary for both of us and our 3 year old!!! Afterwards he can't move the left hand side for around 40 mins which makes me very scared to leave him alone.
That's nasty for a 3 year old to see. Yeah my parents are always scared to death when they see me have one, I'm starting to think it's much worse for them than me!
Im so sorry to hear of your experiences, so similar to ours. When you say the seizures lasted 8 and 10 mins, do you mean in total, from the jerking to coming back to consciousness? My husbands have been around 2 mins for the jerking but up to 20 mins being totally unaware of anything or responding to my commands. As you say, this is terrifying. I cant leave my husband now, he is so terrified, which is totally ruining our lives. Although his disability means I am his carer and he is never on his own anyway, as he has little or no use in his left side.
Hi Molly, In answer to your question the actual jerking lasts 8 mins jerking and they takes a further 2 mins to respond. He then continues to not be able to move left side for an additional 40 mins...and is much weaker on that side for 2 days after. He is also much more confused and childlike (which may also be down to his fear) for several hours afterwards. The other thing is that despite him being exhausted afterwards he can't sleep for hours as he says his mind is racing. I have also noticed that since the first seizure in March he has myoclonic jerks (sp) during his sleep.
I think that epilepsy is terrifying anyway....but on top of a brain injury where reactions afterwards are more 'intense' and 'confused' it can add to the fear for the sufferer but also the carer.
I agree, the whole thing is so frightening. My husband has struggled with crying ever since his SAH, he gets very upset at every little thing and worries about anything and everything. I cannot go out without him now, if I go to put washing out, he is often crying when I get back in, worrying that something will happen to me whilst Im in the garden. We have a lifeline system, which should give us some comfort, but it doesn't seem to, as its all still going to happen regardless. I wondered if he was having some night time jerks too after the last time, but he used to twitch a bit anyway when falling asleep, so Im not sure.
I so agree with you about the additional fears on top of the original brain injury. We were just starting to feel a little more positive about everything when the first one happened, and now we feel right back to square one.
There doesn't seem to be anyone who can help either. Everyone is so different, that no one can say that it will end soon, or it will get better. Its the unknown that is so awful.
We are in our late 50's and live away from the children, so have made the decision to move back near to them for their support and help, once Steve has had his surgery to replace his skull bone flap, and can change hospitals. Its a very lonely life without the family around you!
I do hope you are getting lots of help and support, as you sound much younger and having a little child must be a nightmare too.
Thank you for your message, it certainly helps to know we are not alone in all this.
Not as young as you would think! I am 43 and my husband just turned 54....we tried for many many years for a child and then she came as a surprise later in life.....then when she was 6 months old (Feb 2011) our world fell apart....... It is a very lonely life these days but I know why our little girl came now...she is my lifeline. Best wishes, Nicola
Hello B_S_A,
I was diagnosed as epileptic after my TBI in 1967. My fits are petit mal, suddenly feel at peace with myself and have a few vacant moments. That's it. My last fit was in 1968. Then I went for an eye test where an intense bright light was shone in both eyes. It made me feel sick.
On the train, at the station before mine, the same feeling at peace descended upon me and I eventually gathered my wits about me 3 minutes later at my station [It takes three minutes between stations]. I felt a bit confused and discovered that I have bit my tongue too.
It occurred three more times, all involving rythmic changes of light, sun shining through trains, that sort of thing but much shorter events. But why after all these years?
The answer comes with an anti-fungal treatment = 1 in 10,000 light sensitivity.
I'll be mentioning this to my doctor next week but I won't be letting it get me down and I'm not worrying about the next one. Your events seem more serious but worrying won't help. See the doctor, ask advice, assess what you're told and sort out a suitable treatment.
The thing that scares me is when I'm on the train going to university and coming back, I try to just say "if it's going to happen, it'll just happen", but it doesn't really help.
i hope things will improve fr you .i have had fits since my op,and thy frgthten me,im not glad tht you are going through the same thing,but i thght i was being silly being scared of them and frm reading your blog n the replys i now know its not just me they scare . tke care x
I hope things are getting better for you. My son has epilepsy after sustaining brain injuries some years ago. Trouble is, as you have found out, it does not always follow a pattern. He does not always have "Auras". Unfortunately not all seizures begin with an aura and can happen without warning. His seizures can vary considerably from convulsing, drop down attacks, or just very bizarre repetitive behaviour. The problem is that most people associate epilepsy with convulsions and any variation can bring forth accusations of drunkeness, drugs etc., - very distressing for all concerned. I just wish that people were more informed about the different forms epilepsy can take.
I have always had plenty of time to tell people what's going to happen, what they should do etc. I'm thinking of getting a bracelet or necklace that tells people I'm epileptic so I can show them before it happens, maybe that's something you should consider that too?
He is 42, single and lives on his own - had his accident 12 years ago. Trouble is he normally has no memory of these seizures and denies anything is wrong. His stock answer is, "I'm alright". If he has injured himself during the seizures he may, at the time, accept there is a problem, however that does not last. Constantly rationalises the irrational. Will not speak to a doctor because - you've guessed it - "I'm alright". He gets very agitated if I or anyone else persists.
You are being very wise in getting a bracelet or something similar as if people are aware of a problem they are usually very helpful.
My boyfriend had a seizure 5 weeks ago, nearly 18 months after his stroke, and it was very scary as he shouted 'I'm having a stroke' before going into seizure and then unconsciousness. He is on Levitiracetem now, and I am very scared of it happening again, especially as he is often on his own during the day. I just really hope the drugs control it but it's far too early to say at the moment.
I know my family are on edge all the time about me having a seizure, if they hear any noise at all they come running up the stairs, it means they care though, which is wonderful.
I was scared of being on my own too, but it's not something I'm prepared to do forever. He's lucky to have you
This is what could be described as a useless comment but after reading through these accounts of what you all have to endure...........and never knowing when............I just wanted to say, that my heart goes out to all of you and I wish that, someday, you might find medication that will make all your lives a little easier.
Thanks Cat, I have had epilepsy since 14 ie puberty (Good memory) !!
I get the shakes in arm warning to lie down in recovery position.
I was on Epanutin but they are not good for a lot of people and I was also taken off of phenobarb as well, which I have been on since first fit and my fits became worse after SAH, so I asked if I could go back on it and not had a fit since they upped my phenobarb 4 years ago.
I wish everyone well and always wondered why God made me have fits as it wasn't fair but I am so happy now days.
Good Luck All xx Always check the pills the docs give out x
I have always had good teeth but epanutin made my gums shrink. sob !
I have regular blood tests for liver and been okay she says tapping head.
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