Got an appointment on tuesday

[Buddy's owner]

With my epilepsy nurse. Well epilepsy just wait til she finds out. I'm already on 750mg keppra with the fancy name that I can't spell or say and my neurologist says it can go up to 3000mg. So far this year I've had a seizure over in america, then back home in england uk the day after my birthday another seizure, then 3 weeks ago another seizure then monday night another seizure of some sort that wasn't my usual tonic clonic.

The one on monday night mum was on holiday so it was my sister who had to deal with me and when it comes to my seizures she is useless my sister is, take the one in america for example my sister apparrantly took me in the bathroom in the shop to wash my hands as we were at lake carter and my ice cream had gone on my hands, I started walking in circles apparrantly then just fell but she caught me I'm told, lay me down then ran off panicking screaming call the ambulance and just completely freaking out. Mum who is much calmer dealt with it. My sister just completely freaks out runs around panicking. I'm getting rather fed up of having seizures. I'm keeping my medical rants on here because on here everybody actually understands and has a clue. You get support on here and everybody is friendly.

 

[Nakamova]

Levetiracetam! (Why can't they make generic drug names easier to say/spell/remember, etc.)

I hope increasing the dose helps get the seizures under control.

 

[Daroswene]

With my epilepsy nurse. Well epilepsy just wait til she finds out. I'm already on 750mg keppra with the fancy name that I can't spell or say and my neurologist says it can go up to 3000mg. So far this year I've had a seizure over in america, then back home in england uk the day after my birthday another seizure, then 3 weeks ago another seizure then monday night another seizure of some sort that wasn't my usual tonic clonic.



The one on monday night mum was on holiday so it was my sister who had to deal with me and when it comes to my seizures she is useless my sister is, take the one in america for example my sister apparrantly took me in the bathroom in the shop to wash my hands as we were at lake carter and my ice cream had gone on my hands, I started walking in circles apparrantly then just fell but she caught me I'm told, lay me down then ran off panicking screaming call the ambulance and just completely freaking out. Mum who is much calmer dealt with it. My sister just completely freaks out runs around panicking. I'm getting rather fed up of having seizures. I'm keeping my medical rants on here because on here everybody actually understands and has a clue. You get support on here and everybody is friendly.

I hope the new dose works for you.

I have the same issue with friends and family during a seizure. I've shown them how to use my magnet over the VNS, but no one ever does. I think they're scared; they freeze like the seizure affects them too. I just remind them to make sure go help me get to a safe position, protect my head, and not put anything in my mouth.

There is a support group on Facebook for spouses, friends, family of people with epilepsy. My husband uses it often; they help each other cope. It's called Spouses of Loved Ones with Epilepsy.


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[Freda]

My daughter (33) has just been diagnosed with epilepsy and so far I've seen her have two of her seizures, the others have been at work and she works in a hospital so there have been doctors present. I have to say it's not easy to see a loved one have a seizure and dealing with her confusion afterwards can be challenging but myself and three daughters have all worked in hospitals and have seen these kind of things before, even so the impact when it's a family member is quite different.
Ask your sister if she will read how to deal with someone having a seizure, it's so much easier when you know what to do and have the confidence in handling a situation. I felt like my heart was going to leave my chest when I saw my daughters first seizure and even the second was scary. I went on google and found out as much as I could because being told what to do doesn't always register when it happens, but reading it over and over seems to work better for me.

ETA - My daughter is also on levetiracetam, 1000 mgs twice daily.

 

[masterjen]

If Keppra is the only seizure medication you're on, 750 mg is a fairly low dose. Often if one's seizures are relatively infrequent (or that the person is going through a period of time where seizures are just less frequent for some unknown reason) it can take longer to determine whether a particular dose is adequate or not. So a possible explanation is that Kappra might have seemed for a while that 750 mg of Keppra was helping at first when in fact the dose was not really high enough.

 

[Buddy's owner]

Levetiracetam! (Why can't they make generic drug names easier to say/spell/remember, etc.)

I hope increasing the dose helps get the seizures under control.

That's the one. I have no warnings lately except from Buddy though for a whole week before the seizure on monday I was tired to the extreme so wonder if that was my brain going loopy due to the on coming seizure. Oh and I won't try and say that lol. My cousin who has epilepsy she lives in america well she is coming over for christmas with my aunty and uncle, the one I had in america she saw and it upset her. She has never had or seen tonic clonic seizures as she only gets focal seizures and hers is a heck of a lot more controlled than mine. She is younger than me about 12 I think and I'm 31. How do you explain to my 6 year old niece why I sometimes just fall then start convulsing?

 

[Buddy's owner]

If Keppra is the only seizure medication you're on, 750 mg is a fairly low dose. Often if one's seizures are relatively infrequent (or that the person is going through a period of time where seizures are just less frequent for some unknown reason) it can take longer to determine whether a particular dose is adequate or not. So a possible explanation is that Kappra might have seemed for a while that 750 mg of Keppra was helping at first when in fact the dose was not really high enough.

I started of on 250mg then had to up it to 500 then 750. My neurologist did say if need be as 750 is still a relatively low dose we could go ahead and up it to 1000. My seizures seem to be getting more regular. I have clobazam that he said take for 3 days at night whwn you get a warning either your flashing light auras or your dog. Hey epilepsy get lost.

 

[Buddy's owner]

My daughter (33) has just been diagnosed with epilepsy and so far I've seen her have two of her seizures, the others have been at work and she works in a hospital so there have been doctors present. I have to say it's not easy to see a loved one have a seizure and dealing with her confusion afterwards can be challenging but myself and three daughters have all worked in hospitals and have seen these kind of things before, even so the impact when it's a family member is quite different.
Ask your sister if she will read how to deal with someone having a seizure, it's so much easier when you know what to do and have the confidence in handling a situation. I felt like my heart was going to leave my chest when I saw my daughters first seizure and even the second was scary. I went on google and found out as much as I could because being told what to do doesn't always register when it happens, but reading it over and over seems to work better for me.

ETA - My daughter is also on levetiracetam, 1000 mgs twice daily.

I take 750 twice a day.

 

[Buddy's owner]

I hope the new dose works for you.

I have the same issue with friends and family during a seizure. I've shown them how to use my magnet over the VNS, but no one ever does. I think they're scared; they freeze like the seizure affects them too. I just remind them to make sure go help me get to a safe position, protect my head, and not put anything in my mouth.

There is a support group on Facebook for spouses, friends, family of people with epilepsy. My husband uses it often; they help each other cope. It's called Spouses of Loved Ones with Epilepsy.


Sent from my iPad using Tapatalk

I have an old neck injury from one of my seizures a couple of years back that healed, they only found it when I was in hospital with appendicitis recently. I still see people on youtube saying put something in the persons mouth during a seizure, errr no don't that is outdated, we will not swallow our tongue. Bite our tongue yes but swallow it no.

 

[Nakamova]

I still see people on youtube saying put something in the persons mouth during a seizure, errr no don't that is outdated, we will not swallow our tongue. Bite our tongue yes but swallow it no.

I hate when I come across that still. I wish there would be a public service announcement on TV, in the subway, etc. making clear that you don't put something in a person's mouth and you don't hold them tightly to try and stop them from convulsing.

 

[Buddy's owner]

I hate when I come across that still. I wish there would be a public service announcement on TV, in the subway, etc. making clear that you don't put something in a person's mouth and you don't hold them tightly to try and stop them from convulsing.

Drives me crazy. Doing those things can do us more harm than good.