Burn_Baby_Burn
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Hi all,
I'm a single mother of two, and have been told by the doctor that I possibly have PTE but am awaiting results and medication. I have my next appointment at the hospital next month with the neurospecialist. My first seizure was at 13 years of age and up until 2 years ago, I only had a few a year.
2 years ago I was hospitalized after having a seizure from which I didn't "come to" for 48 hours and I'd stopped breathing and my heart had stopped beating by the time the ambulance came. I was told by the hospital staff that I had TBI and scarring on the brain as a result of being assaulted by my ex-husband years ago (which had left me with extensive facial fractures) and the hospital told me that that was what caused the seizure. I was given a pamphlet on brain injury but didn't give me anything on seizures or how or what any of it means. I left the hospital confused as they didn't explain properly what it all meant. The most embarrassing part of it was that hospital staff told me that they'd had to chuck out my clothes because apparently I'd lost control of my bladder during the seizure and had urinated on my clothing. The whole thing was very confusing and humiliating.
Since the seizure that landed me in hospital 2 years ago, the seizures have increased to clusters of seizures a couple of times a month, so that I have a few seizure in a day every two weeks or so, sometimes it's more often and sometimes it's less often. I was told by the doctor that my seizures are tonic clonic or grand-mal but from reading stuff since on the internet I'm wondering if maybe they are more partial seizures that turn generalized as sometimes I get the aura beforehand and sometimes I'm conscious for beginning of it and some of the seizures I can remember tiny fragments of it afterwards. I'm still quite confused about it all, as there is so much information and trying to understand how it applies and what it all means.
Both my brother and mother have had tonic clonic seizures since they were young, but it's like this dirty little secret no one wants to talk about 'cause they think it means your possessed by the devil if you have a seizure. I think 'cause of this I feel alot of shame about the seizures. I hate having them and wish they wouldn't happen, and I'm going out of the house alot less these days 'cause I'm scared of having a seizure in public.
I dunno, I'm embarrassed by the seizures and feel shame. It's all very confusing and I've tried researching it but it seems there is so much information out there that it's overwhelming. The neuro-specialist at the hospital said they would probably put me on medication once they get the results back and look at that in conjunction with the notes/results from the seizure I was hospitalized for. I'm a bit scared about going on epilepsy medication as I don't want to be epileptic, which is irrational thinking I know, I just want this all to go away.
Anyways, that's my story,
Cheers.
I'm a single mother of two, and have been told by the doctor that I possibly have PTE but am awaiting results and medication. I have my next appointment at the hospital next month with the neurospecialist. My first seizure was at 13 years of age and up until 2 years ago, I only had a few a year.
2 years ago I was hospitalized after having a seizure from which I didn't "come to" for 48 hours and I'd stopped breathing and my heart had stopped beating by the time the ambulance came. I was told by the hospital staff that I had TBI and scarring on the brain as a result of being assaulted by my ex-husband years ago (which had left me with extensive facial fractures) and the hospital told me that that was what caused the seizure. I was given a pamphlet on brain injury but didn't give me anything on seizures or how or what any of it means. I left the hospital confused as they didn't explain properly what it all meant. The most embarrassing part of it was that hospital staff told me that they'd had to chuck out my clothes because apparently I'd lost control of my bladder during the seizure and had urinated on my clothing. The whole thing was very confusing and humiliating.
Since the seizure that landed me in hospital 2 years ago, the seizures have increased to clusters of seizures a couple of times a month, so that I have a few seizure in a day every two weeks or so, sometimes it's more often and sometimes it's less often. I was told by the doctor that my seizures are tonic clonic or grand-mal but from reading stuff since on the internet I'm wondering if maybe they are more partial seizures that turn generalized as sometimes I get the aura beforehand and sometimes I'm conscious for beginning of it and some of the seizures I can remember tiny fragments of it afterwards. I'm still quite confused about it all, as there is so much information and trying to understand how it applies and what it all means.
Both my brother and mother have had tonic clonic seizures since they were young, but it's like this dirty little secret no one wants to talk about 'cause they think it means your possessed by the devil if you have a seizure. I think 'cause of this I feel alot of shame about the seizures. I hate having them and wish they wouldn't happen, and I'm going out of the house alot less these days 'cause I'm scared of having a seizure in public.
I dunno, I'm embarrassed by the seizures and feel shame. It's all very confusing and I've tried researching it but it seems there is so much information out there that it's overwhelming. The neuro-specialist at the hospital said they would probably put me on medication once they get the results back and look at that in conjunction with the notes/results from the seizure I was hospitalized for. I'm a bit scared about going on epilepsy medication as I don't want to be epileptic, which is irrational thinking I know, I just want this all to go away.
Anyways, that's my story,
Cheers.
