Epilepsy

[lovedogs51511]

Hi there, is their anyone on here that doesn't drive? I'm beyond frustrated with not being able to get around. How do you all get around if you can't drive? I have no freedom and stuck at home. Right now I'm getting around by my mom helping me. I'm not suppose to drive but I do ride a scooter. Just trying not to get stopped. I lost my license and car a year ago due to a seizure. I think I missed a dose of meds. So now it's tough getting around. I had only had my license and car for 2 months. I love driving so now I'm completely devastated.

[Hidden]

I don’t drive and get around just fine on my legs, public transport or if I’m on a night out I get an Uber

I’m fit free for almost 10 years but too nervous to get behind the wheel as would hate to put other people (and myself) in harms way. Much safer just using what’s available rather than taking the risk. When I lived in bali I did drive a Vespa there and that was great.

Keep your chin up!

[ciley in reply to Hidden]

i have never driven, as it was my decision~i believe cars just create so many bad things,accidents loss of wild space, addiction to driving ,nicking childrens right to play in street, to name but a few, i do not see it as a loss, are the buses really poor in your area, how about a taxi-card?

[lovedogs51511 in reply to ciley]

There's really no buses here in the new city I moved to but I have been riding a scooter for years now.

[lapaisamedallo in reply to lovedogs51511]

Where do I begin? I can’t tell when a seizure is coming and they normally happen when I’m asleep. I did however have 2 day seizures which just happened. One was at work in front of a lobby full of people. EMT went and all. I was a little embarrassed but it’s out of my control. Before that I had another one while driving. Luckily no one got hurt. God is good because the street just happened to be empty and it was right after a traffic light so I wasn’t going too fast. I am very glad I lost my DL but at the same time I lost my job since that was one of the qualification. Since I had been working there for over 15 years I was able to collect unemployment and retire. I’m now on disability so the money helps. I also lost my house, car, etc. I have a wonderful boyfriend who takes care of me. He’s the one who mostly drives me places. If not I take Lyft or Uber. I also walk when weather permits. There are lots of places within driving distance. I was going to the pool by myself which my doc said no more. I never even thought about it LOL. I’m also very stubborn. I was also diagnosed with MS so in the hot months I basically mostly stay indoors as the heat causes a lot of health issues which are no fun 😞. All I can say after summarizing everything in this book long reply is we all find or have to find ways to deal with the major changes. Yoga has helped me a lot. I’ve been exploring that for about 3 years now. I suggest everyone try it. It takes some time to get used to. Since I don’t have a DL I do it at home thanks to YouTube. Hope this helps at least lift your spirits.

[lovedogs51511 in reply to lapaisamedallo]

What you said is what scares me the most but nobody understands that in my family. I had the seizure driving in Vegas and like you I luckily didn't hurt anyone. I crossed 5 lanes of traffic, hit a cable truck, hit telephone pole and power box. I was super lucky nobody was hurt. I'm going to be looking for a job in a few months after I get thru my CNA classes. Like you mentioned I'm terrified of losing a job and lose disability after 9 month trial work period. Now in Utah everything is to spread out. Bus barely runs at all. I have moms help right now. After that everything's up to me. I have no husband or boyfriend that helps me. Plus I have no money cause my disability doesn't even cover rent. Lots of scary things on my mind. I so very much appreciate you telling me your story!! I'm so sorry all that happened to you. I'm happy to hear your boyfriend takes good care of you. Wish I had that security. So sorry to hear your suffering from MS too. I also used to go swimming in the pool at my Vegas apts. I was doing 70 laps at like 1 or 2 am. Never thought of having a seizure in the pool. Got lucky I guess. So I totally understand what your saying. I stay indoors too during the summer. Thanks again for sharing!!! I just saw your message. I'm so sorry I didn't get back to you sooner!!!😀😄

[ciley in reply to lovedogs51511]

dear god its tough now, after 5 years in wrong place suffering daily, friend gets health probs,and would now feel guilty about leaving, at its bleakest nowe work out the implications for yourself.are you still scootering? i've gone in for back-ache lately, got one private treatment which helped i can walk ok without aid,

[lovedogs51511 in reply to ciley]

Oh I'm glad you can walk ok thankfully. I'm still stuck on the scooter. Yippee I guess. Just moved to Utah and I need a car to get meds at Wal-Mart which is far away now. Everything is so spread out unlike Vegas. I can now go get Utah license. It was my fault that the accident happened in Vegas. I think I had no sleep which I think caused the seizure.

[GillSans]

Hi, I don't know what it's like in Utah, but could you get your meds by post, or delivered by local Pharmacy?

If I go swimming, the local pool are really nice, as long as I have someone swimming with me. Been dragged out unconscious a few times

Please remember your possible triggers: being tired, flashing lights, sudden noise, etc., etc.

Be aware of the risk when sun is low with light flickering through trees or bushes.

[lovedogs51511 in reply to GillSans]

I'm not sure if I can get meds delivered or mailed. I have no money at all even if they did mail prescriptions. I'm on disability and it doesn't even cover my rent!!

Holy cow!! Dragged out unconscious? How scary that must of been. At least you have friends you can go swimming with. That's great.

My triggers only seem to be no sleep, missed meds or if I forget to take them. Then I get really nervous!! I have to take my tegretol exactly 12 hours apart. What medication do you take?? Hope it helps. I have grand mal seizures. What type do you have? Sounds like grand mal too with being unconscious.

Thanks for writing me😄😄 Oh do you drive?

[GillSans]

Hi, my swimming partner noticed that I wasn't keeping up the speed, when they glanced back, l was face down motionless. Being unconscious probably saved me from swallowing a lot of water!

It helps to be aware of possible triggers, I've now got a long list

I have a box for the weeks dosages, each night I load-up a smaller box for the next day, luckily I only have to worry about morning and evening tablets

Keppra was the one that saved me, Fycompa and also Clobazam are my current mix.

No driving for me, since the first episode. I moved to a village with a good bus service and local shops, but not everyone has the opportunity or can do that.

Keep your family and friends close (although I didn't have to). Stay strong and positive in spite of the struggles.

[lovedogs51511 in reply to GillSans]

Wow thankfully your ok after swimming then unconscious!!! Nice friend! Thank God she was there. Or he ??

Yea I only have to take tegretol in the am and pm. Iv e never heard of those medications except for keppra. Glad the medications help!!!!

Where do you live? In just wondering cause you had mentioned moving to a village. Like you said I don't have that opportunity to take a bus or walk cause in Utah things are way spread out. Ill be getting a Utah drivers license soon. I have to drive here. No choice so I have to.

Right now I depend fully on my moms help. It really sucks but after I complete my CNA classes ill be getting a full time job. So I'm hoping to God I won't need her help anymore. Your lucky you didn't have to depend on your family.

Thanks again for sharing your experiences.

[GillSans in reply to lovedogs51511]

I'm in SE England, the UK is on a much smaller scale than Utah

Perampanel is another name of Fycompa.

VNS has made a big difference to the severity of seizures and I usually have a much swifter recovery, although I need a helmet for the small and sudden "absences"

[lovedogs51511 in reply to GillSans]

Just read some on vns!! Wow that's cool that that can help so much. Hope your doing good! Your a strong person you know that!😊

[lovedogs51511]

Oh ok cool. I love everyone I talk to from England!!😄😄 Utah is a small state.

Still never heard of that medication. So weird!

Ill have to check out VNS. Iv e heard of it but need to read about what it is exactly. I'm happy to hear the severity has lessened. Thankfully you recover faster too😀 I'm sorry your still having so many seizures. Its a tough thing to live with I think! Stay strong 😊

[bsa_b31]

In the UK, a seizure carries an automatic 1 year driving ban, with a few months added for medical consultations and the slow deliberations of the licencing agency (DVLA). I live out in the countryside and there is no public transport. I'm the retired one (principal caterer) in a house full of people who work, so the driving ban was a big problem. My solution was to get a 250W e-bike conversion kit (UK road legal), the use of which does not requiring a driving license. I wouldn't recommend it if your seizures are not under control; but if the medication is working well, your consultant says it's OK, and you are just waiting for the wheels of bureaucracy to turn, it's a great solution. Much supermarket shopping was done with the aid of panniers, and I asked others to get the heavy or bulky stuff. I recently got my license back, but I still love my e-bike.