Anyone else experiencing seizure onset for first time after having Covid 19

[redstar9]

Hello everyone, had my first tonic clonic on Wednesday one week after being discharged from hospital after I was admitted with Covid pneumonia. I have a history of vertigo, fibromyalgia and severe asthma but no previous epilepsy or seizures and no family history of it.

[Bern11]

Hi Redstar9... I’m sorry to hear you’ve had covid and now a seizure, and wish you well in your recovery from all this. My son, who recently turned 18, was diagnosed with generalised tonic clonic seizures/Epilepsy, in October 2020, after having 2 tonic clonic seizures - classed as one episode - in his sleep. The very first seizure he had, occurred back in June 2020. At the time we were told that 1:20 people could have a seizure at any time in their life and it may never happen again, so we were hoping this would be the case. Unfortunately it was not. This may be just a coincidence but my son had a lot of illness from the end of October 2019, with a persistent cough that never seemed to completely go away. He also had tummy upsets and in early January 2020 he had tonsillitis...basically one illness after another! I read somewhere recently on the internet, that some people who had previously had covid, even mild cases, were experiencing neurological disorders such as stroke and seizures, although I think it’s rare, but maybe worth talking to a doctor about. I’m sure covid was circulating much earlier than previously thought. For my son we will just never know, it may have been the illness or maybe it was always there. I guess I’m always looking for answers as to why. Wishing you well.

[redstar9 in reply to Bern11]

Thank you for your reply. I have had 5 tonic clonic seizures, one of these in my sleep, 5 smaller seizures of a different kind and 17 muscle twitches where my left arm twitches. Have been to A&E twice. Once on Wednesday at 2am when I had the first one and again on Thursday because I had 2 more in the day. I am waiting for the epilepsy nurse to phone me to make me a clinic appointment. The hospital just sent me home. Feeling quite unsupported. My poor husband is exhausted from eat Hong me and dealing with the seizures. Luckily he is has had epilepsy CV and first aid training through his job. Just want to get sorted as it is really affecting my quality of life. I have also got severe asthma and other health issues that have been made worse by Covid. Just feeling a bit sorry for myself today but really appreciate you taking the time to reply to my post. I am new to this and finding bit quite difficult to cope with.

[Bern11 in reply to redstar9]

Gosh I’m really surprised at the hospital just sending you home with so many seizures occurring and different types happening also! This must be having a huge impact on your quality of life right now along with the covid recovery and your other medical concerns. After my sons second seizure that occurred in October, a consultant from Neurology came to see him while he was in A&E and put him on medication straight away. He was so lucky we didn’t have to wait for an appointment with a doctor or nurse. They gave him Clobazam and Keppra. The Clobazam was only taken temporarily for a week but he remains on Keppra, taken twice a day. I’m going to say this, which is so easy for me to say and you may think why say it at all then, but try not to get yourself too stressed either as I believe that stress can also make seizures worse. I very much understand how difficult you and your husband will be finding this right now, it’s a huge thing to deal with and quite a shock. Your husband knowing exactly how to help you if you have a seizure is great knowledge. Epilepsy is my sons diagnosis, not mine, but yet I feel terribly anxious and quite frankly terrified by it all. Bed time is particularly stressful! Right now you really do need the help and support from the specialists. And It’s ok to feel sorry for yourself with what you’ve been through and are now going through, after all feeling sorry for ourselves is a natural human emotion and we need to do that sometimes. I really hope you get to speak with an Epilepsy nurse soon, they are full of knowledge and very helpful and are there for you whenever you need them - barring weekends and after 5pm! Lol. Take care.

[redstar9 in reply to Bern11]

My husband rang 111. The Dr rang him back and they are admitting me. Hopefully they will get me sorted out.

[Bern11 in reply to redstar9]

Glad to hear this. Fingers crossed for you 🤞

[redstar9 in reply to Bern11]

Neurology and the specialist epilepsy nurse are coming to see me tomorrow. My friend is a specialist paediatric epilepsy nurse and she spoke to her friend who is an epilepsy nurse at MPH. She shared the video of my seizures that my husband sent her and my friend her in on what has been happening.