I was diagnosed with generalised idiopathic epilepsy aged 43 in 2013 after having 2 tonic clinic seizures within 3 months of each other. Fortunately 1000mg a day of levetiracetam got this under control & I got my life back to as it was. After being 2 years seizure free I was discharged from the neurologist & told I could come off the medication if I wanted. I didn’t want to risk doing that so instead I slowly decreased my dose until I was taking 500mg a day - still no seizures. This boosted my confidence & I suppose I wasn’t as on the ball taking my meds & I had another seizure after a day & 1/2 with no medication. This confirmed to me that I couldn’t come off & I made sure I took 500mg everyday. Then in 2020 out of the blue I had another seizure. GP upped my medication to 750mg & I’ve been seizure free for a year. No ones ever been interested in finding out what caused me to start with epilepsy at 43, the MRI didn’t reveal anything but the EEG showed seizure activity. I’m so frustrated at not knowing why this has happened to me & how unpredictable it is. I have no triggers apart from feeling ‘off’ & a bit nauseous & 3 times out of 4 I’ve had alcohol the night before, but it doesn’t happen every time I drink. I am peri menopausal & changed my diet to vegetarian so wondering if that may have caused the last seizure. I have a constant roaring in my head that seems worse when I’m tired & have had this prior to my first seizure in 2013, the neurologist didn’t think it was relevant. My husband killed himself in 2010.. could the stress have caused the epilepsy? I just want to understand why this has happened & would love to hear from others with similar frustrations.
Does anyone have a constant rushing noise ... - Epilepsy Action
It can be really helpful to share support and information so I hope you hear from others here.
We know that people have a lot of questions about epilepsy and why it starts. Some people can link their epilepsy to a physical cause in the brain, though if this was the case it would have shown on your MRI scan. Some people's epilepsy might have a genetic link. But in half the people with epilepsy its not possible to find a cause for epilepsy starting. Its thought that our genes play some part but doctors don't know exactly how yet. We have some information that explains more about what epilepsy is here: epilepsy.org.uk/info/what-i...
You mentioned that you've identified some possible triggers over time with your seizures, such as alcohol and stress. We know that there are some things that make it more likely for a seizure to happen. So although stress wouldn't be the cause of your epilepsy, it could have been a trigger for your first seizure. But a lot of people find it hard to identify definite triggers for every seizure: epilepsy.org.uk/info/triggers
We know that missing meals might be a trigger for seizures but there's no evidence that a vegetarian diet makes any difference to seizure control as long as your diet is balanced. But some women notice changes to their seizure pattern around the time of the menopause. This is a link to our information about menopause and epilepsy which explains more: epilepsy.org.uk/info/women/...
Some people can feel a bit unwell or "off" before a seizure so this might be something you could monitor to see if there is a pattern for you. I'm linking you to our seizure diary which might help with this if you need it: epilepsy.org.uk/info/diagno...
We aren't medically trained, so we can't diagnose what the roaring sound you mention is. It could be worth checking this out with your GP though to see if they can help.
You might be interested to know we have other online services as well. Here are the links:
We also have our Epilepsy Action Helpline (epilepsy.org.uk/info/suppor... ) which you'd be welcome to ring if you want to talk anything through. Our number is Freephone 0808 800 5050 and we are open 8.30 – 7pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.
Epilepsy Action Helpline Team
I think what I can get over is why I started with epilepsy in my 40’s with never having a problem before. Is this common? I did have a bad bang to the head about a year previously but as you’ve said any damage would have shown up on the MRI. I did read an article saying that brain bruising can take a long time to heal & this had caused seizures in the case I was reading about. I’m just stunned that the medical profession has no interest in finding out how this could start out of the blue at such a late age
The MRI will not always show the cause because the damaged area has to be very abnormal to be seen on the scan.
Sorry to hear your epilepsy has been worse than usual lately.
I don’t know about the rest of it but wouldn’t be at all surprised if the menopause had an effect, as it’s well known that hormones can trigger seizures. I personally had my first seizure the same month I had my first period! My epilepsy also got worse during both of my pregnancies, but I’ve heard that for a lot of people the opposite is true.
I am pescatarian (but only have fish about once a week) and not had any tonic clonic seizure since I stopped eating meat other than fish 3 years ago.
Hope you find the answers you need!
Hello, Dobradee. I think you're right when you say that you'll just have to accept that you'll not be able to get an answer as to why. I've just had my 63rd birthday 2 weeks ago and have been blessed with excellent health all my life. I had my first tonic clonic seizure last September. Had blood tests, a CT scan and MRI which were all thankfully normal, apart from the fact that the blood tests revealed me to be low in potassium. For me, personally, I have 2 theories. Theory number 1: the slight bang I got on my head in summer 2018, when I came off my bicycle (and broke my arm) did some harm that eventually revealed itself in 2020 as a seizure. However, nothing showed up on the MRI. Theory number 2: the seizure was caused by an imbalance of electrolytes (i.e. the low potassium) as a result of the combination of strict keto diet plus intermittent fasting that I'd been doing for a few weeks, to lose the lockdown pounds. I lean towards theory number 2. What I didn't realise is that keto diet needs to be carefully managed. On it the body excretes more fluid and it is easy to create an electrolyte imbalance (if you don't drink enough) which is known to cause seizures.
After the first seizure I was referred for an EEG, which I had done in February. It revealed "slight seizure activity" and as a result I was put on 500 mg Levetiracetam morning and evening. That dose stopped what we now think were what may be called absence seizures which my husband had been noticing between September and February. Since starting the Levetiracetam in February he hasn't noticed any more of these absences. However, 3 weeks ago I had my second tonic clonic seizure as a result of which I'm now, like you, on 750 mg night and morning. I'm hoping that, just as it seems to have worked for you, the increased dose will keep me seizure free.
The thing I find most difficult about all of this is that we don't know that the medication is working until it doesn't, if you know what I mean. People ask me how I am and I say I'm feeling well, until suddenly I'm not well and I open my eyes to see a paramedic/doctor/nurse staring down at me! Apart from the side effects from the drug, which seem to have gone away within a few weeks of starting it or increasing the dose, I am feeling absolutely fine, which is good.
You've had great difficulty in your life, with the death of your husband, and some people do think that stress contributes to seizures. I think it helps a little to know that you are not alone. I wish you all the best and hope that your 750mg keeps doing its job!
Thank you for answering me, you must be so frustrated. It’s awful that feeling of waking up not knowing what’s gone on. I smashed my front teeth in the first time & split my lip wide open, my memory was blitzed. The rest of the week was a blur. I worry about the long term affect on my memory & brain function of such a traumatic event to the brain. My kids have been there for most of them & it’s scared my eldest so much he has health anxiety now. I was just wondering about your theories. Did you lose consciousness when you fell off your bike? Did you have a brain MRI at the time of the accident? I’m still thinking about the brain bleed/bruise theory. I thought they actually recommended keto diets fir people with epilepsy. If that is the cause would getting your electrolytes & potassium back to normal return your body to status quo & stop the seizures or has it caused some permanent damage? What has the neurologist said about your theories? Sorry for all the questions!
Well, firstly, I live in Northern Ireland, which is part of the UK and here we have the much praised NHS, which in recent times is not as good as it used to be! It is under such pressure that I was told, in February, that I had been referred in September for an outpatient neurology appointment but that the waiting times for non-urgent cases (such as I apparently am) is 5 years. Yes, you read that correctly: 5 years. So, instead, even though for years I have paid monthly, via my salary deduction of National Insurance, to be able to use the National Health Service which is "free at the point of use/need" the NHS is not there when I need it so I am paying for a private neurology appointment. Even the private neurologists have waiting lists and I don't get to see one until September! So, I haven't seen a neurologist to put my theories to him!
I did not lose consciousness when I came off the bicycle but I did get a little cut above my eyebrow and some bruising there and around my eye. And, no, there was no MRI at the time of the accident.
Yes, you are correct that the keto diet is considered to be good for epilepsy but from all that I have now read it needs to be managed carefully, measuring out the combination of carbs with fat and protein, and not just an ad hoc "I'm going to seriously reduce the carbohydrates I eat" method.
I suspect that even if the diet caused the epilepsy, once you've got it you're kind of stuck with it. The brain has started to behave in a particular way etc.
I think we may just have to accept the lack of answers and take each day at a time. We are having unusually beautiful sunny, hot weather this week, and the same is forecast for next week so I am now going to make lunch and eat it in the garden, in the shade: pretending that I'm on our usual holidays in the south of France! I hope you have a good day wherever you are and whatever you are doing.
Being a person from Norn Irelan I totally agree with you about the state of NHS, it is a bloody disgrace, it is not the health workers who are mostly saints, [they have to be over here!] but the actual 'system' which is disjointed, and completely out of touch! I have epilepsy my neurology records pre 2013, [I have had epilepsy since 1970] have been lost! Having had over 400 + seizures, politely told my next seizure will probably be my last! Private neurology care in Norn Irelan don't make me laugh! Like yourself will probably go out and enjoy the sunshine! People over here have a black sense of humour and my god, in situations like this we need it to survive!🙄
Oh, Adlon57, being told your next seizure will likely be your last? That's terrible.
People were encouraged to stand on their doorsteps and "clap for the NHS" but, frankly, I'm thinking it would've been better to be encouraging us to pay for private health insurance all these years as without it we're just left to languish on interminable waiting lists. I was told by my GP that those urgent cases who are waiting for a first outpatient neurology appointment are waiting about 3 years. There's something seriously wrong with the system, all right, and I don't think there's any politician has any good ideas about how to fix it.
In the meantime, I set the alarms on my phone, take the pills at the allotted times and try to live my life as best I can in the hope that things will not get worse.
I had a feeling that was the situation, but now to get used to it, downsizing etc, stay cool! A recent hospital visit confirmed it! The political situation always seems to be what religion you are, over here, who gives a s###, its peoples lives', that ALWAYS is the most important! Although the neurology department in my particular area has recently got a very bad name for itself🙄🥴
I’m totally stunned, that a) seizures are considered non urgent & b) 5 years! What an absolute joke! 🤬Seizures are life threatening! I would have gone crazy waiting that long to be seen, although I got no answers when I did see a neurologist. I didn’t realise that once the brain starts behaving a certain way, you’re stuck with it. After I had been seizure free for 2 years I was discharged & told I could come off the meds if I wanted, but cutting down/being careless made me realise I need then for the rest of my life. So I’ll just keep popping the pills, accept what I can’t change & hope for the best. Currently chilling in the morning sun, in north Wales. Enjoy the sunny weather guys!
Yes, try telling my husband who has witnessed my two tonic clonic seizures, both nocturnal, that seizures aren't urgent! I do believe he's been, to some extent, traumatised by them. And he's got a tendency to be a worrier by nature anyway so now he's waking up in the middle of the night and listening to hear if I'm still breathing, or becoming anxious if he can hear me breathing but thinks I'm maybe breathing too loudly! We would like some answers. I've got a list of questions written out for when I get to see the neurologist in September - though I've only got a 30 minute appointment slot, so hopefully we can talk fast!
Personally, if I become seizure free for 2 years I think I'll likely want to keep on with the pills as my EEG revealed "slight seizure activity" even though I felt fine during it! And one thing the pills have definitely done for me is to eradicate those absence seizures - I hope I'm using the right description. That's where I would have, to use my husband's words, "gone blank" for 30 seconds to several minutes, with no response forthcoming when he spoke to me.
Yes, it's crazy but crazily true: 5 years! MY GP told me that there are some people who are having such bad seizures that they've lost their jobs - some because their jobs involved driving - but they can't claim benefits as they've not officially been diagnosed by a neurologist. So, I suppose they have to live on fresh air unless they can afford to pay for a private neurology appointment. The NHS system is at best seriously ill, possibly terminally so, unless someone can come up with big changes. Maybe if some of the millions of pounds had been spent on the NHS that's been spent on Track & Trace etc. it might have been of more benefit!
Enjoy your view. That's a gorgeous sky!
Absolutely the stress is likely to be related. I had my first Rigg after losing my close friend. Menopause and menstruation are also known triggers. Don’t feel alone….
Thank you. I absolutely hate it x
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