okay long one I’m sorry. so I was recently in hospital for 2 weeks following an increase in tonic clonic seizures, as they were usually at night but suddenly started happening during the day time(My seizures only started in May last year for reference and in 27)The day I got admitted I’d fallen during the seizure and hit my face on the kitchen side as I fell, broken nose woo! 😅
I’d been in hospital for a week, still having multiple seizures, and I had a seizure during the day while awake that lasted 45 minutes. I was taken to ICU and was intubated, ventilated and sedated for 2 days. After coming round 4 days after the seizure I was told by a new neurologist that he thought my seizures were none epileptic. I told him that I didn’t agree as my neurologist is certain the nocturnal ones are epileptic. I asked why I would have been taken to ICU and sedated etc if it wasn’t an epileptic seizure. He didn’t answer my question. I just felt like everything I said he was shutting me down on as he told me your eeg while in icu was normal so it wasn’t epilepsy. Baring in mind that I didn’t have a seizure while attached to the eeg. He did keep me on my medication (lamotrigine & brivaracetam?) though but discharged me and told me to try and video the before during and after a nocturnal seizure. The meds seem to be working but I’ve set up a camera in my room and caught one.
I’ve since had a telephone appointment with my regular neurologist who’s told me in his opinion he’s positive my nocturnal seizures are epileptic but it’s possible I could also be having none epileptic ones during the day too, so he is referring me to the specialist epilepsy clinic but he will see me in clinic in 3 months.
However, I have a face to face appointment with the neurologist I saw in hospital tomorrow. I’m literally on edge, panicking and second guessing/doubting myself. Re-watching the video of my seizure wondering what bits he’s going to pull apart etc. I guess I know it shouldn’t be normal to feel this way and I’m just feeling stressed and uncomfortable that he’s just going to shut me down again. Mentally I’m not doing too great already worrying about how all this will impact my two kids (2 under 2😅)
I just wondered if anyone has any advice at all.
If I were to describe what I can see in the video for reference it would be - I’m lay on my back asleep, my eyes open wide staring at the ceiling for 10 seconds then my head slowly turns all the way to the right, while groaning. Then my whole body stretched out and tenses and I make a noise that I can only describe as sounding like a pterodactyl 😅 (Jurassic park kinda thing) then my left leg comes up in the air, bent at the knee, while at the same time my right arm fully extends up on the air fist closed. My left arm is bent and my right leg is straight. I start the clonic phase of shaking my arms and legs still flat on my back and head turned, facial muscles twitching on the left side of my face. Eyes wide open the whole time. Then I just stop. This has been 1minute 58seconds at this point. My mum rolls me onto my side and I start to make really strong strenuous breathing for another 2 minutes before seeming to choke and moving onto my back. I then start pulling at my clothing as if I’m trying to take them off for another minute then I go back to sleep. I was unresponsive to my mum talking to me and I have no memory of this. When I woke up in the morning I felt like I’d been hit by a train and I’d also severely bitten the left side of my tongue quite far back (was swollen for a week😩)
If you’ve managed to read all of this, thank you so much! Any advice at all would be very much appreciated!!
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Beyouandonlyyou
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Hi there, I am so sorry you are going through this. Out of interest do you have a headache after and how long does it last? Does your taste go and do you sleep for a couple of days? I ask this because I have night seizures and afterwards I feel like I have been hit by a train and it takes 3 days to recover. The headache is unbearable and my taste, sense of smell go and I have to sleep for at least 24 hours. I bite the inside of my mouth too and make strange sounds and also swallow continuously. My diagnosis is Focal Seizures, Best wishes Cherry
Yes when I wake up after a night time seizure my head is pounding and every little movement/noise makes it so much worse. I always have an acidic taste to my mouth but have always put that down so feeling extremely sick/actually being sick. Definitely takes me at least 3 days to get back to my usual self and not being asleep all of the time or in pain.
Hia there, I'm sorry this reply won't get to you before your appointment.
It always seems a battle to get neurologists to really listen to what you are saying. It is easy for them to go down a "ticky box" route where they just send people down treatment paths that are just not appropriate to a person's particular condition.
You have obviously done a lot of research and keep doing that. Often you need to go and see a neurologist with your own agenda - what you think you're suffering from and why ane also specific things you want actioned like which drug and which tests.
If you get refused there are other neurologists and in UK you have right to see another.
If you keep going and be persistent you can definitely make progress with this. Even small steps forward are still steps forward so keep chipping away at it.
There is an Arsenal of drugs and treatments that can be tried and it's just a case of getting neurologists to actually positively do something to make you better. Keep going, you are obviously doing brilliantly already.
It is possible for people to have both epilepsy and non epilepsy seizure.
If you have any questions following your appointment, please post on here or contact our helpline team directly.
You can , either email helpline@epilepsy.org.uk, live chat epilepsy.org.uk/support-for... or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm
You can have epilepsy and have a normal EEG. There could be an error in setting up the EEG or it might be faulty and no test is 100% efficient even though Dr and consultants will tell you otherwise.
A normal EEG does not mean that you did not have a seizure. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test.
You should ask about status epilepticus and the risk of SUDEP if you are having predominantly night seizures. I know SUDEP Is hard to accept but it is part of the risks of being epileptic
A seizure that lasts longer than 5 minutes, or having more than 1 seizure within a 5 minutes period, without returning to a normal level of consciousness between episodes is called status epilepticus. This is a medical emergency that may lead to permanent brain damage or death.
SUDEP occurs most often at night or during sleep when the death is not witnessed, leaving many questions unanswered. There may be evidence that a person had a seizure before dying, but this isn't always the case.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pure stress and tension! Epilepsy seems to thrive on it!
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