New to Epilepsy

[Melhukin]

I witnessed my son have his second seizure yesterday morning whilst still in bed. He was released from hospital after bloods taken and sent home. His fit lasted longer than 5 minutes which resulted in him turning blue in his face.

His first seizure was back in February at night whilst he was at uni with his girlfriend - and with it being back in February and not having another seizure they didn’t think it was epilepsy and was released from hospital checks.

We are now waiting for a new neurologist appointment.

Watching him turn blue and struggling to breath has totally scared me and I just panicked and thought he wasn’t going to make it through. He was frightened to go to sleep last night and as a family are all left in shock from what we witnessed.

With him having his fits whilst asleep Im thinking of buying the epilepsy pillows. Is there anything else anyone would recommend?

Thanks

[Lbone25]

Hi Melhukin

We witnessed the same thing with my son age 9 . This was the scariest thing Iv ever witnessed. 7 months on I am still struggling with it .

We bought epilepsy pillows, we have also purchased a Tonic clonic bed mat .

These have helped but unfortunately doesn’t take the fear away 😢

[Melhukin in reply to Lbone25]

Has he has more seizures since? I just feel constantly sick with worry.

[Lbone25 in reply to Melhukin]

yes had nore focal seizures, these are not as scary as tonic clonic , he becomes really unwell after them , sick sleepy dizzy , its bit nice but easier than the trauma of the tonic clonic . Just a couple of weeks ago he has officially been diagnosed with temporal lobe epilepsy so we have been warned to expect more , unlike tit was a one off.

I feel fear every day of witnessing this again . I was hoping over time the fear would go away but unfortunately its just as bad as day 1 . I am coming terms in my head the fear will be part of my life now .

The hide the fear from my son though ❤️

[Lbone25 in reply to Lbone25]

*not nice (typo above)

[Hospitalspain]

I would just like to send my best wishes to your son and hope he is put on suitable medication very quickly. My seizures only began in my early 70's - one major where I ended up in hospital for 4 days and a few months later, another two smaller ones in quick succession - After which I was put on Levitarasium (sp?). I'm on 250MG X 2 DAY. I persuaded sp nurse to allow me to stay on that low dose and 1 year later I've not had another fit. Keeping fingers firmly x'd it stays that way but these are powerful drugs and I was very reluctant to go to the higher doses recommended. Every case is different though I know. It must be very frightening for younger people when Epilepsy strikes and I hope his medication will protect him for the future. Good luck.

[Melhukin in reply to Hospitalspain]

We are waiting for a neurologist appointment. Just a waiting game.

[MO4BB]

Hi I am so sorry that you, your son and your family are having to go through this. I totally empathise with you. My 22 year old son had his first tonic clonic on 16th March 2020. It is a terrible thing to witness. He has had another 10 since then and I know the fear that you are feeling.

My son has temporal lobe epilepsy which is not fully controlled, he still has focal seizures which affect his language centre so he can’t speak or understand English while having them but on his current medications he hasn’t had a tonic clonic for 10 months. Hopefully your son will be put on some meds soon. It’s very much trial and error to find the one that works best. We were advised by my son’s specialist to use some kind of monitor at night. He uses the epilepsy pillows which he finds reassuring and when he’s not staying with his girlfriend we use a baby monitor so we can hear if he has a seizure.

My thoughts are with you all and hopefully your son will find medication that will stop his seizures and that will help the fear that you are feeling.

Best wishes

[Colealbi]

Hi my son is now 20 he had his first seizure in Dec 2021 woke up by a strange loud breathing through liquid ? he wasn't very responsive and strange gestures, coughing blood -phoned 999 about an hour later it arrived the paramedic took him to an ambulance he was becoming more coherent at this time, 20mins later the other paramedic came and spoke he said " I think he has had a seizure because his heart is racing at 150BPM it was about 1am, they took him to hospital I couldn't go due to Covid protocols at 5am hospital phoned to go pick him up -bloods ok -No cause nothing -he didn't have another seizure for around 12mths again woke up by the strange breathing, he came round much quicker less blood the bites to the tongue aren't as violent still not seen what happens in its entirety. in May 23 he had another seizure same noise woke me up seems to occur at night saw a GP he made a referral on July 10th to WTC L'pool Aug 19th had another seizure I was in the same room ( He has played computer games for 11yrs -I'm now thinking its photo sensitivity!) he left the room controller in hand - he doesn't do that !- he got to his bedroom door shouts seizure he falls backwards I catch him and lay him on the floor his eyes roll into the back of his head his lips go purple I can see his purple tongue behind his teeth his teeth are visible that noise is him breathing through his clenched jaw through saliva and his legs start to shake both at the same time then its over he just wants to get up and go to the toilet. - it was 21:09 when i followed him out of the room it was 21:14 when I reentered the room when he went to the toilet- that was a scary 5m seems much longer¬ had an appt with the registrar in TWC Sept was told he is tonic clonic and he is at risk of SUDEP ! he has had an EEG and an MRI on 25/26th October MRI states no structural damage to his brain we are still awaiting the EEG report he had a seizure at 9am on the morning of the EEG bashed his head and body getting out of bed he said he went to sleep at about 5am he is now on a Lamotigrine program and as yet NO seizures its very early days so its a time thing -conclusions drawn are sleep deprivation with perhaps a photo sensitive element.

The Lamotigrine initially kept him awake for 18hrs it then went up to 26hrs and the program was still 25mg a day after a month things got slightly better then he progressed onto 2x25mg twice a day he is now sleeping between 10 and 12 hours a day and seems to be much more of himself - however me I never sleep more than 2hrs at a time that's the SUDEP component I will not allow him to put his face down in the pillow some days he sleeps in one position other days he turns often, then he wants to put his head in the pillow and I accept this is how its going to be for as long as necessary and forever is fine !

I sleep longer in the day because for us he doesn't seize in the day!

Our lives are what they are and acceptance is the key !

SUDEP occurs due to low oxygen keep a window open it will keep the body saturated during the seizure -( This is why seizures over 5mins are serious if its the case for you then get some oxygen from your GP- flow rate is 15L/min this is what is administered in hospital in SUDEP situations)

Stuffy rooms, sleep deprivation, odours and heat are not friendly environments for people in general and just a little more demanding for people with epilepsy ! (My opinion!) .

Melhukin I wish you well !

[Melhukin in reply to Colealbi]

Thank you for your reply. Wow reading your post - it sounds so stressful, bless your son.

My son was put on lamotrigine within a few weeks he had a skin reaction and we ended up in a&e.

He is now on Epilim.

My heart goes out to everyone that suffers. X

[Colealbi in reply to Melhukin]

Sodium Valporate is not good !

Initially on Lamotigrine my son suffered from intense insomnia up 26hrs missing tablets and never following the regime I requested a different med, they wanted to give him Epilim.

I checked it out and so should you -

I'm NOT scaremongering research it ! as sodium valporate

You take care

[Colealbi]

Sodium Valporate is not good !

Initially on Lamotigrine my son suffered from intense insomnia up 26hrs missing tablets and never following the regime I requested a different med, they wanted to give him Epilim.

I checked it out and so should you -

I'm NOT scaremongering research it ! as sodium valporate

You take care