My daughter (22) had a night seizure a few weeks ago (first time) that her friend saw - she didn't recall it until her friend described it. Following that she has recalled having night episodes that sound like potential night seizures over the last few years that doctors put down to anxiety. She has had not Seizures since but the Neurologist we saw has said it is likely to be Eplilepsy and is advising her to start on Lamotrigine. The EEG scan was normal and MRI is tomorrow - but again the Neurologist says the EEG can be non-conclusive and she should just start on the Lamotrigine...
I just wanted advice from anyone else on wether its wise to start taking the meds - could this be managed as we know the triggers are likely to be alchol and tiredness or is it safer to take the meds anyway to keep her from developing another episode just in case?
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rlal143
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Hi sorry to hear about your daughter I'm having a similar battle with my brother but going on what I'm experiencing with my brother and also the fact that I am epileptic myself and I have been on the medication you mentioned I would say that if the test is at the moment coming back normal but the consultant is suggesting this medication I would go on the advice also I would keep a dairy for every time your daughter has a episode and look into a possibility of epilepsy in the family history this is where my brother and his battle got difficult for years nobody knew it was in the family and professionals even said that he was faking fits he got intouch with me and that's when everything changed I was his missing link ( I was adopted at birth so my information was missing) I became his next of kin and I used everything I knew about epilepsy and I kept a dairy for him and once he handed over the dairy within 5 minutes of leaving the GP thay asked him to come back for his letter to see the consultant for epilepsy next year because thay now believe he's epileptic rather than non epileptic and he's still having the fit's mainly in bed but I can't get him on meds until that appointment but the meds will help calm the fit's down.
Hi there, my daughter had her first ever seizure last year aged 21 (5 December 20) We have no family history of epilepsy & her seizure was the scariest thing I’ve witnessed. At the time she was working many hours as a carer, was 5 months pregnant & was having a few personal problems. Taking all of this into account we thought this would be a one off, she too was advised by the neurologist to start medication but because of her mental health problems and her pregnancy decided against it. We decided to go private for a second opinion who said that she definitely didn’t have epilepsy & should never have been diagnosed in the first place, she (and us, her family) were extremely relieved however, last Saturday 11 December she had a second seizure (again, stressed and tired) I was on the phone to her at the time & by the time I got to her she had come round she was covered in blood, she’d split her lip & had a bad tongue bite. Medication was started in A&E (Levetiracetam) & we’re currently waiting for an appointment to see the neurologist. I just can’t help wondering that if she had started the medication last year this 2nd seizure may not have happened. I’m scared to leave her alone now, can’t sleep & constantly worried for her.
I don’t know if this will help you at all, I just felt I had to share my experience with you, mum to mum. I hope your daughter, you & your family have some answers soon.
Does the neurologists special in epilepsy if not get a second opinion from one that does. Ask if it could be Psychogenic Nonepileptic Seizures PNES if eeg & mri is clear as treatment is different.
Learn as much as possible about epilepsy and the medication that is possibly going to be given it is a matter of trial and error when trying to find a suitable anti seizure medication and it can make you very unwell as I know, learn about the side effect and the indications that side effects are happening such as rashes, yellowing of the eyes or skin etc etc.
Epilepsy is not just about seizures there is an increased risk of depression and anxiety, suicide and SUDEP.
Thank you so much for your replies… it’s really helpful. The consultant is a neurologist and specialises in Epilepsy.. we have decided to go with her advice and start meds.
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