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[Burn_Baby_Burn]

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 neurologist-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.

[CathyAnn31]

***hugs*** and welcome to the group. You don't need to feel ashamed of anything here.

[rich956]

Cheers
Aint no shame here>>>>

[CQ:)]

Hi Burn_ Baby_ Burn,

Welcome to CWE, you should find a lot of information here which will help.
We can all relate to epilepsy so you don't need to worry about being ashamed or embarrassed here.
It sounds like you have been having seizures for a while, is there any reason why medication hasn't been suggested to you before.
I see that you are also from Australia & are going to be seeing a Neurospecialist at the hospital. I'm not sure whether you are seeing a Neurologist or Epitiologist (similar to a Neurologist but specialises in epilepsy). May I ask which hospital you are going to?

I live in NSW but am currently through the epilepsy research program at the Austin Hospital in Melbourne. They have an epilepsy clinic there every Monday afternoon with a great team of Neurologists, Epitiologists & Neuropsychcologists.

[Burn_Baby_Burn]

The hobart hospital, and I think it's just a neurologist but I'm not sure. I've seen someone a neurologist-specialist (think a neurologist but not sure) from the neurologist section and some technician who did the last EEG, but I'm not sure whether they are neurologists or what. I'm also seeing the maxillo-facial surgeon as I'm on the waiting list for surgery to my face due to the fractures in both bottom and top jaw and cheekbones. I get confused with what they are all called. My brain doesn't work the same since before the assaults so please forgive me.

Growing up my parents didn't believe in medical care (against their religious views), so I wasn't taken to the doctor about the seizures, instead my parents did exorcisms which is not fun at all. And it was really hard 'cause I couldn't stop the seizures or hide them from them. As an adult when with my ex-husband he didn't want me seeing the doctor full stop as he was beating me and he didn't want to get in trouble for it and the only times I ended up hospital when giving birth and after the police were called due to his assaults on me and then I'd be hospitalized for treatment.

Since leaving him, I guess I didn't seek help for the seizures due to there being bigger things to worry about, like the fractures in my face and body and needing specialist care in regards to that, and 'cause every time I'd go to the doctor I'd find it hard to talk as I tend to down play what's wrong as I don't like to bother other people. I've since learned to write down what I need to say when I go to the doctor so that I don't forget when I'm in there because I get really shy and feel like I can't talk. He laughs when I bring in my notes now.

When I was hospitalized 2 years ago due to the seizure, they didn't bother asking me if I'd had any seizures before, or maybe they did ask and I just don't remember, as I was very disoriented for a day after I "came to". I do know that when the ambulance came, that they injected me with some sort of benzo to stabilize me as my friend who called the ambulance told me later, and I was on benzos by drip in the hospital. But they didn't recommend any medication when I left.

I just wanted to get out of there and anyways, just so many doctors and nurses and they didn't take time to explain properly and answer questions as they are so busy, the doctor just walked in with a team of student doctors and went blah blah blah (telling me about the TBI and how it had caused the seizure etc...) and I was like, "Huh?" and then he left, he didn't ask me any questions, and came back the next day and told me I could go home the next day as I hadn't had another seizure in the time I was there, and I was just desperate to go home and see my kids, so the next day some doctor came by and told me I could go. Some lady came around just before I left from the head-injury clinic and gave me a pamphlet, but didn't really explain anything. I was so confused and not up to demanding them explain to me in words I understand about what and why and how etc...

But as the seizures increased since then (I had 8 in a day at one point which really scared me including one in the shower, which my 6 year old saw 'cause she was standing at the door of the bathroom asking me something), after that I went to my local doctor and told him and he sent me off to hospital to see the neurologist-specialist. He had a look at my records and said that I probably have PTE, and he sent me off to have another EEG and MRI. I saw him again and he told me that as soon as they got the results that he would probably put me on medication. Hence my appointment next month.

[CQ:)]

Wow it sounds like you have had a tough life. Sorry to see that your ex husbands abuse has caused so much injury to your face. Good luck with the surgery for that.

It can get confusing remembering all the names of what each specialist is. I've been seeing a neurologist since 2002 & in 2009 he referred me to an epitiologist. When my neurologist 1st mentioned the epitiologist it took me a little while to work out how to say EPITIOLOGIST lmao.

Keeping a record of your seizures or a seizure diary is a really great idea as it does help the specialists treat your epilepsy better. I have been keeping a seizure diary for 10 years which is really an exercise book but it works. Whenever my seizures weren't under control & I had an appointment to see my neurologist I would type any seizures since I last saw him on the computer & print them out then just hand him the print out so he could read it himself. It was much easier then trying to remember everything from the top of my head.

Do you have a date for when you see the neurologist? Good luck with the appointment & let us know how it goes

[Nakamova]

Hi BBB, welcome to CWE!

I hope you can get the seizures under control. it can help to write down all your questions for the neurologist beforehand, and write down the answers too. And if you aren't completely clear on anything the neurologist says, don't leave until you are comfortable with the info. If you discuss medication, ask for all sorts of info: why a particular medication might be better or worse, what to expect, what to watch out for, how/when to call the neurologist with any questions or concerns, what your options are if the medication doesn't work, etc...

I hope you can get over the shame about seizing in public, and not let it limit where you go and what you do. Maybe it's because I've had plenty of t-cs while out in the world, but at this point, I just don't care what folks think.

[DadofTwins]

BBB,

Welcome to the site. There is no need to be embarrassed or ashamed. Feel strong! You've been through so much and are a survivor. You should be proud!

Tom

[Krista2882]

Hi!
So sorry to hear all the bad stuff you've been through. It's totally understandable why you are embarrassed about having Epilepsy- because of the way your family treated it when you were a kid. I'm sure you know this, but please keep reminding yourself that seizures are a medical problem and nothing "superstitious". I know the idea of having a seizure in public can be embarrassing, but you also shouldn't think of it as something shameful.
You mentioned that you get your seizures two weeks apart. There is a type of Epilepsy called Catamenial Epilepsy that is triggered by hormones. Some people only get these seizures once a month, but I get them twice a month- during ovulation and then when I start my period. If they're always like clockwork every two weeks, that could be a trigger, and I hear that they can be treated by progesterone cream... others here have tried that but I haven't.