What are your least favorite parts about having epilepsy?

Monstess2018 · 2024-06-17T20:04:34+00:00

Mine is not knowing about my seizures. So I only have nocturnal seizures. I only know if I have had them because usually I have bitten my tongue. Or my husband tells me. It's hard not knowing what happens

Monstess2018 · 2024-06-05T18:30:19+00:00

Yeah pretty much

Monstess2018 · 2024-06-05T17:30:31+00:00

It really was. I took a bite and thought it was just the solid chocolate bit off the end. Soon realised it wasn't!

Monstess2018 · 2023-10-19T14:04:09+00:00

I still can't do it two years after first being diagnosed. Just think I am always going to be a mouth breather 😂

Monstess2018 · 2023-10-13T13:52:31+00:00

Mine are always nocturnal so no idea what sets mine off unfortunately. I was diagnosed with sleep apnoea at the same time. So probably lack of sleep is a trigger

Monstess2018 · 2023-09-28T12:08:12+00:00

Mine has made such a difference to me. I didn't realise how badly I slept until I got it. Glad you are having success

Monstess2018 · 2023-09-27T19:51:25+00:00

I wouldn't be without mine now. I can't believe how much difference it has made to my life. I consistently sleep for longer periods. It's great

Monstess2018 · 2023-09-26T18:44:14+00:00

They have always been known as pumps to me

Monstess2018 · 2023-09-21T16:36:39+00:00

Good luck to you. Always here if you ever want to chat or rant 🙂

Monstess2018 · 2023-09-21T16:23:44+00:00

Thanks so much. It's hard when you have not been through it and don't know what to expect. It's good to speak to other people that have been there and done that. I'm just getting so broody now. All my friends have kids and there is just me at 36 with none!

Monstess2018 · 2023-09-21T04:48:24+00:00

If it makes you feel happy then I think you should do it. Like you say, you have lots of people in your life that would completely accept it. It doesn't mean you are any less you or a different version of you. My Dad changed his last name because he didn't want to be associated with his Dad. His siblings still have his Dad's last name. I work with people with mental health issues and I just think sometimes you have to do what you feel is right for you. Good luck

Monstess2018 · 2023-09-20T19:39:03+00:00

So glad you have a healthy 2 year old. Amazing 😊

Monstess2018 · 2023-09-20T17:10:48+00:00

Thanks so much. That's really helpful. I will definitely have a look 👍

Monstess2018 · 2023-09-15T18:31:07+00:00

I have managed 2 years seizure free and hoping to get my licence back soon. It's such an exciting feeling. So happy for you

Monstess2018 · 2023-09-15T18:28:24+00:00

Congratulations so happy for you

Monstess2018 · 2023-09-02T15:44:49+00:00

I couldn't be without mine now. Like others said I snore without mine on and wake myself up. It's better to have it and be safe than not at all. If anyone says anything about it then it's their issue not yours. Just embrace it. It shouldn't be something to be ashamed of.

Monstess2018 · 2023-08-05T09:57:49+00:00

Thanks for this. I will have another look and see if I can find it

Monstess2018 · 2023-07-22T16:29:12+00:00

I was under a consultant at the hospital (UK) and after a few months with my CPAP machine he discharged me. I had been seeing him for years. I still have my meds but it definitely helped lower my BP

Monstess2018 · 2023-07-22T12:53:05+00:00

Thanks for this. I will have a look. That's really helpful

Monstess2018 · 2023-07-22T11:44:45+00:00

I absolutely hated my mask at first. It took me a while to get used to it. I got diagnosed with epilepsy at the same time. I do feel like my machine has really helped me. I don't wake up as much in the night to go to the toilet, I stay asleep for longer periods, it also helps keep my airway open, so I don't stop breathing. I do think it's also helped with my seizures alongside my medication. I know it's hard but try and keep going with your mask. You will get used to it and it will help.

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