support needed

[Charlie90]

I have epilepsy

I was diagnosed following a brain injury in 2019

they tell me it is caused by scar tissue from the brain injury

anyway for 2 years I have been experiencing seizures every 1-2 months

have now tried 5 different medications

this month would of been 3 months seizure free the longest in 2 years

then have a huge tc on Monday for over 1 hour

that they could not get me out of

guess I just want some one to talk to

I have been experiencing

absolutely debilitating anxiety since then

feel like I’m on the edge of a nervous break down waiting on the next seizure to happen

I am experiencing physical symptoms of anxiety which I have been told can mimic seizure activity which then has me on edge even more

just need some peer support

I have rang the headway helpline and tried ever single anxiety relieving strategy I can find

help!!!!!

[Dobradee]

I’m so sorry to hear what you’re going through & completely understand the extreme anxiety you must be going through. After my seizures I’m scared to go out in case it happens again. Fortunately my seizures are now under control with medication. With a mix of medication & mental well-being support you will find a pathway back to a functioning, happy life. It may take time & determination. I hope you have access to professional support

[Charlie90 in reply to Dobradee]

THANK YOU for your reply

Nice to know I’m not alone

I know I’ll bounce back I always do

But it takes time this time feels particularly worse

I think it’s because I made it 3 months the longest in 2 years!

Not sure if it’s because the seizure was basically status for over 1 hour.

So I feel much worse physchologically and emotionally

I have a neuropsychologist snd excellent support from family and friends

But they just don’t get it

No matter how much they try they are amazing!

Yes that’s what I get like petrified to go out anywhere

I’m just trying to rest as much as poss hydrate meditate and I’ve worked the odd hour in work wfh in a low pressured role

I find the distraction helpful

very very supportive employer

what medications do you take and what type of seizures do you have?

Hope you don’t mind me asking x

[Beyouandonlyyou]

I’m not sure if this will actually help you in any way 😅 but I can relate somewhat.

I had my first seizure in May only last year. I’m 27, so to go from having none to 2 weeks of multiple tonic clonic seizures was a big shock.

Scans all fine no clear cause but eeg showed some changes on frontotemporal regions both sides. But couldn’t catch my seizures on one.

Tried a couple of medications and thought Keppra (Levetiracetam) was working it reduced them to 2 an hour apart every 3 weeks.

Then came the side effects so had to come off it in November (probably should have been sooner but I ignored my feelings)

I got put on lamotrigine and from the end of December I was having the seizures regularly again, but this time with absence seizures and myoclonic jerks.

I recently ended up in hospital for 16days and have just got home a few days ago.

I initially went to hospital due to the increase in seizures and I’d had a tonic clonic hit my head badly and possible broken wrist.

While admitted my seizures were getting harder to control and lasting longer and longer.

Until like you I had a 45minute seizure/status, going in and out of tonic clonic seizures but one during that period was 25 minutes alone. I was pumped with a lot of rescue medication which wasn’t working (lorazepam, sodium valproate and something else) I ended up being taken to intensive care and put on a ventilator for 2 days. I don’t remember any of the seizure or going into icu just waking up 4 days later back on the ward I was in but in a different bed 🧐

I’m currently taking lamotrigine 200mg 9am 150mg 7pm and brivaracetam 100mg 9am and 7pm and then also take 20mg CloBAZam at 10pm (or just before I go to sleep)

I just feel anxious, depressed and scared for when the next ones going to happen and now I’m home what if it happens again and I can’t get medical help/in public as I often lose control of my bladder too.

I spoke to a lovely girl I met in hospital who had the same issues and honestly found just knowing you’re not alone helped me.

I can’t help in say it will get any better because we are both at the same point. But I’m trying to think that if it got better before it can get better again.

And if I think about it more I could be triggering myself 🤷‍♀️

I hope you’re okay though, just stay strong and try to keep your mind active!

[Charlie90 in reply to Beyouandonlyyou]

oh my word it sounds like you have been so poorly sorry I’m moaning about once monthly seizures and you’ve been having them a few times a week you are an incredibly strong person

I know with time it will get better

After 3 months seizure free I was alot less reliant on family cater support have been able to be redeployed to a new job role

So there are positives in my life

But the anxiety and fear is debilitating

Sometimes I feel that is not fully understood or listened to

I hope you have a good support system

I wish they would just admit me as an inpatient and do all the tests possible!!!

I’ve accepted I’ll be on meds for life but just wish we could find the right combo

Already tried 5

thanks so much for speaking with me it has been sooo helpful!!

[Astley10]

Am not sure your opinion on the subject 🤔 but cannabis oil will stop your seizures completely u can get it without the thc in it and u won't get a high off it a know this for sure as the person that gave it to my friend in the 90s was a Dr from Manchester her daughter is severely disabled non verbal and was on 40 tablets a day for alsorts of problems now she takes none .money and politics big pharmaceutical giants would lose billions ,it even shrinks tumours but they still won't prescibe it.its out there now because of the Internet mothers travelling to Holland to get the tablets to stop there kids having seizures and spending thousands just to help their kids Dr's over here now have the power to prescribe it but still are not doing it all down to big pharma they would lose billions as u can grow it yourself all u need is a light and water mega corruption and a bit hypocritical as they say its a drug but they have bn using morphine since the beginning of time and that is just heroin 💉.as a say everyone has an opinion on it but it even cures cancer ♋️ big pharma would not be needed then .money is power

[EpilepsyAction1 Partner Epilepsy Action]

Dear Charlie

It sounds like you are having a really difficult time due to your epilepsy. Communicating with people on here, is a really good idea. So I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support groups epilepsy.org.uk/talk-and-su...

We have also just launched our befriending service. Our befriending service links people who are affected by epilepsy to a volunteer befriender. Your befriender could be somebody to listen, if you are going through a difficult time. They could also help you take steps towards positive change

epilepsy.org.uk/support-for...

When epilepsy is caused by a brain injury sometime the seizures are more difficult to control with epilepsy medicine. I wonder if you are under an epilepsy centre for your treatment and care. People with difficult to control epilepsy should have access to a specialist epilepsy service if needed. This is sometimes called a tertiary centre or tertiary service.

epilepsy.org.uk/info/treatm...

Finally, if it would help to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team