I had my first seizure 4 years ago. I thought maybe it was a one off but 18 months later it happened again. Since then I’ve had another 4 seizures. In those 4 years I had all the scans and they showed nothing.
I’ve never seen a neurologist, only spoken to him over the phone for 5 minutes which he said I have epilepsy and I would be given Lemotrigine. 8 months on and I’ve been seizure free while being on the medication.
I don’t know what epilepsy I have.
I’ve been reading a lot of posts on here saying they have an epilepsy nurse. I’ve never been told this, haven’t had any information or had any kind of follow up. If
I don’t want to speak to my partner or family about it because I don’t want to worry them.
Something that is nice is reading the posts on here and not feeling alone.
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isthatamanda
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hi
From what I’ve gathered & been told by my neurologist, the MRI’s, CT’s etc are to rule out things other than epilepsy that may cause seizures (for me they were thinking a tumour or stroke on first admission which were quickly ruled out ). So once they’ve ruled out those other things is when the epilepsy diagnosis happens.
It looks really tough for you & a lot of people who’s posts I’ve read with regards to barely /never seeing a neurologist or epilepsy nurse.
Do you know what kind of seizures you had ? I’m guessing Tonic Clonic since they’re the most obvious to most people kind
It’s good that since starting lamotrigine you’ve been seizure free, but I can definitely get your confusion regarding what’s going on with your epilepsy.
I’m sorry you don’t want to speak with your partner or family about it and hope you find more answers using this site.
After a lot of googling throughout all of this I’m guessing it’s tonic clonic too but nobody’s officially said that. At the moment I’m just happy the meds are working and it doesn’t happen ever again.
So sorry to hear you are feeling a bit lost, we know the feeling and our experience sounds very much like yours - but also very pleased to hear that the meds are working for you. Sadly not the case with our family member and effectively abandoned by the doctors. I know everyone is different. However could someone kindly advise what level of dose in terms of Lemotrigine typically works historically in controlling TC seizures? Without totally dumbing a person down and taking away their quality of life. Sincere thanks. Stay well all.
Hi there, I occasionally read and very rarely reply on here. My circumstances are quite different from yours. However, the word Epilepsy is what we have in common.
I was diagnosed over 40 years ago, have Nocturnal Epilepsy, take Phenytoin, seizure free, etc.
Isolating yourself from your family is a difficult decision. I rarely discuss it with mine, nothing is happening. And that is the only reason. They are fully aware that I have it.
I haven't spoken/seen a Dr/Nurse since the Pandemic. And don't think I need to. However, for you to be diagnosed with Epilepy and recommended treatment without seeing you seems very odd. That's odd to me, is it the way it's done these days..? I see a consultant every 3 months for something else. He did ask if I would prefer a telephone call, there's something about a face to face.
If you wish to see a Neurologist, can this be arranged through your GP..? Or, can they answer your questions..?
On a lighter note, it took me a while to figure out what your name meant...
I suppose if I did want my questions answered I could go to my GP to ask about seeing a neurologist but I’d probably be waiting another 3 years for an appointment.
I’ve done a lot of research throughout this process and I know a huge amount about epilepsy that I didn’t before.
Can I ask, have you had any seizures after being diagnosed 40 years ago?
I hope one day there will be a cure rather than taking medication everyday.
After my initial diagnosis, and whilst in hospital. I had several seizures until they stopped them. Then, about 20 years later, they started, again. My meds were changed to Phenytoin. Which appeared to get them controlled. And apart for the odd one since, I've been fine.
As for your GP and appointments, this appears to be quite common. However, you need to start somewhere. Doing research is fine, just be careful of some of the websites you visit. As for a cure, who knows. As for now, keep taking the meds..!
I'm glad you've heard back from your post. It can be really helpful sharing information and support.
Just to add some information about epilepsy nurses. Not all hospitals have an epilepsy nurse but if yours does you can usually ask if you can speak to them. There may be a separate number for you to ring. Or you may be able to access the nurses service through your neurology department.
I'm also linking you to our other support services to link with others which you may be interested to know about: epilepsy.org.uk/support-for...
If there's anything more you want to ask or you think we can help with you'd be welcome to talk to us at the Helpline either by email, live chat or freephone 0808 800 5050:
A Neurologist ? I was diagnosed in 2018, via an ad hoc phone call someone in an A & E Department, had with a Neurologist. As part of the diagnosis, I was neither met nor spoken to about seizures, the NHS missing critical factors in the diagnosis. Likewise the only comment I've had from a GP in respect to seizures has been along the lines "we don't deal with seizures" and/or "you can die from a seizure". Not particularly helpful
Have found the NHS excellent in providing an emergency response, but only apparent in their absolute absence, in respect to seizure treatment. Don't know whether it's simply due to an absolute absence in resources regionally, or whether the staff involved are a waste of space.
Whilst not from a medical background, have long found it most effective to collate data in respect to my seizure activity, recording such via a spreadsheet, recording trials of various anti seizure medications, the dose, effectiveness and any influencing factors.
Though to be fair, an A & E Department in Glasgow, spoke to a Neurologist in August 2023. And back in August 2021, an A & E Department in Newcastle, spoke to a Neurologist. Though to be fair, the NHS sent me a letter & 2 No. text messages, asking me to attend Hospital yesterday. 4 Hr's on a bus & on arrival "we don't need to see you, something about a leg ?"
You need to tell your friends and family. Not only in case medical attention is needed but also to form strong supportive bonds. Humans are not made to be alone and keeping secrets prevents you from being fully known and loved. The title of your post really drives home the point. I used to live that way. Once I became open with my life, a whole new world opened up. What country are you in?
Don’t worry they do know about it it’s just sometimes when I have a low day I don’t want to speak to them about it because I wouldn’t want to worry them. I don’t have many bad days these days because I’ve come to terms with everything.
That's great to hear. For me, it wasn't that my friends and family only "knew" about it, but that those times when I was down, I could be with them and talk about it. I found I had to get what was inside me, OUT of me by talking with them. It's healing. If not friends and family, then a support group that is regularly attended. Tough though because our natural inclination is to isolate. The enemy loves for us to isolate so he can beat us up.
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