I wanna give up

[upintheskye]

I’ve had enough of suffering with epilepsy I feel so alone. I barely go out and if I do I have panic attacks incase I have one- I’m 25 with no friends to help or family I’m drained and all the doctors keep doing is upping my meds. I want to try vns has anyone else had it ? Xx

[Nines]

Hi, I totally understand how you feel. I've had epilepsy for 9 years and I had lots of friends and family and was popular but since epilepsy I have nobody and like yourself never go out, my phone doesn't ring and my family moved away and to top it off that was all before I had brain surgery and a vns. I feel so hurt and alone it's almost like I'm waiting for the fatal seizure so everything is over and done with. I've tried all the epilepsy medications, high and low doses and the vns caused the opposite of positive signals and caused me a breakdown. I was either suicidal or a raging ball and since having it removed I have an eating disorder and find food I once loved impossible to chew and swallow so I deeply regret ever having it but everyone is different so it might work for you. I'm here if ever you want to talk.

I'm thinking of you. Take care X

[upintheskye in reply to Nines]

Bless u darling I proper hear u ! It’s awful isn’t it. Like it’s so isolating - I don’t know anyone with epilepsy. I’ve just moved up the country miles and miles from my hometown and I feel so tired and down about everything. Xx I’m here for u too

[Nines in reply to upintheskye]

I know what you mean, I don't know anybody with epilepsy either so I get treated like a freak and I've been called it too. I'm just so sick of not getting anywhere and feel like I live my life in limbo. Thank you for being so nice. It really means a lot and you've even managed to give me a smile. X

[upintheskye in reply to Nines]

I don’t wanna seem creepy but I can always give u my number ? Be good to vent to someone that understands. I’ve just been to the doctors - again no help ! So frustrating xx

[Nines in reply to upintheskye]

Hi I hope your ok and that sounds like a very good idea (not creepy at all) so thank you and if you live in the U.K. I will definitely call you X

[upintheskye in reply to Nines]

Hey sweetie sorry crap few days yea I’m uk I live near Leeds do u have whattsap xx

[G1na]

Hi,

I'm sorry to hear about your situation. I am 28 and live a similar lifestyle as you when I have "seizure binges." I have had the VNS for close to 5 years. I did not like my vns for roughly 2 years because I didn't feel it helped. Now, most times it gets me out of my seizures. It either helps lessen the severity of my seizures or it snaps me out of them. The downsides for me are: I naturally have a hoarse voice (it makes it worse when it turns on or after using the magnet), cardio is difficult because it feels like I can't breath (I tape the magnet on my chest to turn my vns off), when I'm nervous and it turns on my voice gets shaky, and maybe other reasons I can't think of right now. Overall I'm happy I made this decision because the benefits outweigh the side effects for me. Feel free to ask me any specific questions you may have.

[upintheskye in reply to G1na]

Sweetie what are the requirements to be able to have it. I’m going to my doctors today to ask if I am able to have one x

[G1na in reply to upintheskye]

In the US my Dr. was the one who suggested I get it done due to failing most medications and because they cannot locate where my seizures come from. I agreed and didn't think twice. I think it's a great idea to give it some thought, ask your doctors questions, and find others opinion on their experience online. I feel that I jumped into it. In 4 more years I have to go back and get a new battery replaced. I'm lucky that I only have one incision in my neck line so its not very noticeable. I've seen others that have 2 incisions. I'm also looking into neurofeedback which is something I had never heard of. I'm trying to avoid brain surgery as much as possible. I have made changes to my diet, added on physical activities, and am working on learning meditation, less stress, takong my medication on time, etc. These things also seem to help. If you don't already, write down patterns you see with your seizures. Mine are due to stress, lack of sleep, and menstrual cycle. For women, hormones can play a role in triggering seizures. I have been put on birth control pill to help my hormones. One month in and I have experienced 2-3 all month compared to 3-4 a week. Look at all your options, ask a lot of questions, don't agree to anything before doing your own research. In my case, Dr's. have sold me a dream just to end up feeling like I've been lied to. Now I always ask them questions and go back home and do research. Also, I always try to focus on all the good epilepsy has brought to my life. It's very easy to feel down and see how badly it affects our lives. I also like to look at how strong it's made me, how blessed I still am in different ways, and that others are praying for the life I have now. Being positive about my epilepsy helps my epilepsy. When I dwell on it, I trigger more seizures. Our brains are powerful and we can help ourselves in other ways besides only medication/ surgeries.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Upinthesky

It’s good you have heard from others on here, as sharing experiences can be a good support.

It sounds like you’re having a really rough time. If it will help for you to talk to someone please do phone our Epilepsy Helpline (freephone) 0808 800 5050. We guarantee a friendly welcome and can discuss your concerns confidentially.

Our helpline is open Monday to Thursday, 8.30am until 5.30pm, Friday 8.30am until 4.30pm.

Regards

Diane

Epilepsy Action Helpline Team

[upintheskye in reply to EpilepsyAction1]

Thank u I appreciate that so much x

[AMH76]

I know exactly how you are feeling. I've got no friends, don't go out, can't get a job, have anxiety and depression and had the odd panic attack (like seizures aren't enough!). I'm lucky enough to have my mum who helps me.

If anyone is in Manchester and would like to meet then please get in touch. It would be good to talk to people who understand all the difficulties of epilepsy etc.

[upintheskye in reply to AMH76]

Thanks Hun I live near Leeds so not too far. Xx

[GillSans]

I've had epilepsy for more than 30 years. I've slowly got used to living with it. After I started using the VNS magnet after having surgery for the implant, I was taught to swipe it over the implant quickly to stop the seizure.

You're not alone, so don't let epilepsy make you think you're useless, because many people want to help you by being friendly.

Medication can be difficult for the doctors because all their patients are different. Give them information of your own seizures so they can understand more about yours.

Don't give up. Remember to think positively. Even that can make a difference.

[upintheskye in reply to GillSans]

Bless u Hun thank you. I hope I get to see the consultant soon so I can ask for VNS but they want to explore medicine side of things first xx

[MKenSin745]

Hey there. I've had epilepsy for 10 years now and just decided this year to get a VNS. Tell you the truth. It takes a while to get the frequency adjusted correctly and sometimes it's good and they change it and it gets worse. It has helped my mood, but I still speak with someone frequently and am going to start seeing a therapist again. It's been a while since I have seen one. I have bad insomnia during the night and end up sleeping all day. You just have to have good, open conversations with your doctor before and afterwards.

[upintheskye in reply to MKenSin745]

The doctor says I haven’t trialed enough medication. They want to trial me on some new drugs first but I’m just so exhausted. Can I ask have your seizures stopped since the VNS x

[GillSans in reply to upintheskye]

The criteria for inclusion in the VNS is quite strict and there is probably a long waiting list. My VNS has been active for about three years, alongside several different medications. The seizures have not stopped, but I am more able to live with the way they make me feel whilst they occur.

[Purpleandred1914]

Hi I hope I can say the right words I have had epilepsy for over 40years and it took time but I am now seizure free I know the depths taking seizures can plunge you into suicide yes I have been there you need to find someone to talk to and that someone has to be a good listener and also a good councillor take care of yourself eat healthy try exercise I'm sorry if this sounds insulting but if applicable don't drink .

You say your friends have abandoned you they probably don't know how to cope but in time you will find new friends genuine friendships.

I know its very hard but with time and patience and like I say working with your consultant you will have a normal life with your epilepsy under control.

[upintheskye in reply to Purpleandred1914]

Bless you darling I did need to hear that so thank you ! It’s just draining. Good days and bad. And no one seems to listen all they do is up medication or change it. Which isn’t helping. But I see the consultant next month so Hopfully good news will come of it xx

[car67]

Hi

Sorry , It’s another, “I totally get how u feel”, it’s horrible, and it’s lonely, embarrassing, and feels like shit, tried and tested all the meds and nothing works. Butttt if we continue to feel like this we will end up going down that horrible spiral that doesn’t help. At one point I wanted to give up, it was topping myself or changing the way I think , and I did the latter. I started to listen to self positive quotes on you tube, I took up walking with a friend so I wasn’t alone, I began adult colouring which helped me be mindful of my thoughts, I started to go out again socialising for half an hour at first and built it up to 2 hours. I love listening to music and dancing around in my room, that way if I have a seizure the bathroom nearby as I always need the loo after a sezizure 🤫 but most important,y I learnt and taught my self to accept this condition, and it wasn’t my fault I got it but I wasn’t going to let it beat me. Once I had accepted it things became slightly easier, I was more confident to say to my colleagues and friends I can’t or won’t do that as it is a trigger for my seizure. Don’t feel upset , feel proud evrymorni g when you wake up that you survived another day. Trust me there’s thousands out there that feel the same as we do, but we will get through this together. My best wishes are with you.

Ps, I have just woke up after having to use my emergency medication after 4 days of seizures on and off, but it’s fine because I am proud that I woke up and hopefully was able to help you. Tomorrow another day .🥰