topic Epilepsy in Welcome and orientation

Epilepsy

Blufftuff — Sun, 10 May 2020 05:52:58 GMT

having suffered epilepsy for over 35 years, I was wondering if there were others who also suffer epilepsy, as would be great to chat, share our stories and encourage one another,

look forward to chatting.

Epilepsy

Peppermintbach — Tue, 12 May 2020 08:24:08 GMT

Hi Blufftuff,

I wanted to say that I think it’s really good that you posted about epilepsy, even though I realise it must be difficult to live with...

While I don’t suffer epilepsy myself, there are other forum members who will be glad for a space to share experiences...

Kindness and care to you,

Pepper

Epilepsy

Blufftuff — Sun, 31 May 2020 06:03:26 GMT

Thanks for that

Yes I know there will be number of people who suffer epilepsy and I know it is great to be able to share and relate to people going through same or similar experience.

I run

Epilepsy

Ardbeg — Mon, 13 Sep 2021 02:38:54 GMT

Hey mate I have it to going on 25 years, had a lot of trouble this year, I know how isolating and anxiety inducing it is.

Support services and peers are hard to find, I've been in contact with the Epilepsy Foundation to seek some discounted psychological services and per support groups. They are difficult to find. I hope the Foundation staff gets back to me today with details. If so I'll share what I can.

Feel free to reach out to me for a chat.

Best,

Anthony.

Epilepsy

SR2333 — Mon, 13 Sep 2021 02:52:54 GMT

Hi Blufftuff,

I don’t know if I count but I am a person with controlled epilepsy, had my first tonic clonic when I was about 31 and my last when I was about 37 so around 5 years ago. Always happy to chat but. 🙂

Epilepsy

MumTwo85 — Tue, 22 Mar 2022 10:50:22 GMT

Hi,

Not sure if anyone in this thread still sees this. I also am an epilepsy survivor, keen to see if we can chat about how each of you cope with it.

Love and peace to you all.

Epilepsy

geoff — Tue, 22 Mar 2022 16:29:55 GMT

Hello MumTwo, and a wwarm welcome to the forums.

I'm so sorry you have to suffer from epilepsy, just as I do with 'grand mal' and it has taken quite a while for the doctors to correct my medication, as I used to fall through windows and glass tables, with people thinking that I was intoxicated, but I wasn't and only having seizures.

I am interested to know how you obtained this and how you can cope with it.

Personally, I take much more than the usual dose which is 100mg, while I have 2400mg a day with one medication and another is also much higher and makes me tired.

I can't mention the names because it's against BB rules, but can I ask you, are you allowed to drive a vehicle.

Take care.

Geoff.

Epilepsy

romantic_thi3f — Wed, 23 Mar 2022 22:57:06 GMT

Hi MumTwo85 and a lovely wave to Geoff 🙂

Welcome to the forums and thank you for joining us!

Yes I have it too. It's absolutely taken its toll on me physically and emotionally. I don't think there's one particular way that I cope, just kept going when I wanted to give up.. I'd love to know how we can support you here.

Epilepsy

geoff — Thu, 24 Mar 2022 21:23:43 GMT

Hello Dear romantic_thi3f, I am so very sorry you are suffering from this, I don't think I ever knew and hope we can help you with this.

I'll check later on as I am about to log off.

My very best.

Geoff. x

Re: Epilepsy

poida80 — Tue, 15 Nov 2022 07:30:13 GMT

Hey mate, your post is retry old so not sure if you’re still online.. but could probably hear from someone like you today. Like you, I’ve seemingly got ‘controlled epilepsy’ tho I’m only 3months seizure free… life’s upside down.. black dog biting my arse. I know I need a new frame of mind.. I just don’t know where to find it.. meanwhile everything else, marriage, family & work, are all falling to pieces. How did you navigate this part of your life? I feel like my adversity is so much smaller than so many others’, but they’re all doing a much better job of it 😞

Re: Epilepsy

Elephant86 — Wed, 21 Jun 2023 04:32:21 GMT

I have grand mal epilepsy and I have figured out that I have a health plan where I do things and take steps to keep myself well like reading ,cycling , healthy diet, right medication, social outing . Do things that make you happy and well. Finding the right form of exercise is important to stay healthy. Your diet is important I use the meditaranian diet more fish and vegtables and healthy olive oil. Managing your epilepsy is difficult but the is always hope, love and guidance from family and professionals. Meditation and mindfulness also helped me stay centred and relaxed maybe it can help you. You have the strength with in you to overcome this difficulty you have to beleive in yourself and the strength within I love reading different books to build my knowledge to help my recovery.

I think sorting out what activities keep you well and happy is important for your wellbeing. I hope this has given you some guidance and help going forward

Have a wonderful day

Re: Epilepsy

Elephant86 — Fri, 23 Jun 2023 01:55:18 GMT

Good morning

How do you feel

I am also an epileptic so i totally understand the pain and difficulties you go through Ive had since I was 11 but I don't let it stop me. I have put into place a health activity plan. You choose activities that help you recover I enjoy reading, meditation , cooking , cycling to help in my recovery you can try thes activities. I understand the pain of of a seizure I have experienced a number of them but I keep getting up everyday and I say to myself keep walking , keep making positive steps. I know its difficult when it happens but it is important to find the strength and adversity to keep pushing and be positive I love putting on Mariah carey and dancing do things that cheer you up. Watch your favourite comedian some recommendations are fluffy, Trevor noah and many more it is important to laugh and don't let your condition defeat you I have a number of disabilities but Im still here.

There is a candle that is light every night so that there is hope in the darkness that all will be safe and all will be fine. I think reading harry potter and the Lord of the rings trilogy also helps in reovery. To read and enjoy and laugh is important that is the only thing that helped me to recover Laughter and a positive mindset. It is important to fill your day with positive activities walking, cycling , reading, cooking dinner

I totally Understand I have been there myself but having a positive mindset and positive thinking was what helped me. Create an activity list for positive things you can do to help in healing process. I know it's hard to deal with the epilepsy but you can do many things to help manage the the condition and and have a happy wonderful powerful beautiful life. It was my decision to say I will not let my disability tell me how to live my life I am more powerful then my disability. I look at my disability as a gift that builds resilance.Rember the power is in your hands and you are more more powerful then you know. Imagine your in the battle for middle earth do you think froddo gave up no he stood up and became more powerful by keep moving forward.

Remember powerful positive thinking

Re: Epilepsy

geoff — Fri, 23 Jun 2023 02:18:07 GMT

Hello Elephant86, I have Grand Mal epilepsy and going through seizures is something no one will never know about unless they have experienced this themselves.

The loss of memory and total confusion is unspeakable of, now I have an alarm around my neck so when I fall over the alarm agtivates the head office and then an alumbulance arrives.

There are different types to look at, so have a look on the net.

Geoff.

Life Member.

Re: Epilepsy

Elephant86 — Mon, 03 Jul 2023 01:55:35 GMT

I would like to tell you I understand because me myself Im a grand Mal epileptica and I have been in the situation of having this terrible disease enter my life. I have been able to manage it with the right medication and the guidance from the right professionals. I was diagnosed age 11 and livved with it every since . This is the very reason I can't get my car licence. It is importnat to focus on the positive things and try not to be negative . Focus on the things that help you to recover. Getting a hold of the right litterture that help you make decisions on your health is important. I have an exercise program and eat a healthy diet wiith the right friuts and vegtables and lean meat. I think exercising is very important to your mental health as well.

I hope you feel better soon and we at beyond blue are always here to support you.

Have a wonderful day

Re: Epilepsy

Flowerbell — Sun, 16 Mar 2025 23:18:49 GMT

I am someone with epilepsy myself for a long period. It’s highly controlled. Rarely get them and at this point -3.5 yrs past last seizure it’s on Rd to being past news.

I am on medication.

Re: Epilepsy

Happylife — Sun, 16 Mar 2025 23:59:36 GMT

Hello,

I hope you really feel better soon. Please don't feel alone, we are all here to always listen and support you...

Take care

Happylife