diagnosis question hindsight

[holly]

hi guys..... please can you help answer a question for me

Ok so im curious to know how many of you as adults have been diagnosed with epilepsy, and then realized that those things you did as a child or adolescent were in fact more probable seizures that went un noticed, im trying to put together as much information as I can for my Drs appointment im scared that im not going to be taken seriously so im trying to pinpoint exactly the first time I remember having auras which isn't easy I can barely remember 4 days ago.

thank you

 

[Fedup]

holly

What you need to do is to think back to any period you think might apply as you know and do not be scared, you have to stand your ground and make yourself heard (which is not easy). It makes no difference how long you have epilepsy at every appointment you are still scared of what will transpire. You only remember what you can the frustration you feel, I am sorry. All doctors appointment are scary if you let the doctors intimidate you. So do not be scared, just do your best.

 

[holly]

holly

What you need to do is to think back to any period you think might apply as you know and do not be scared, you have to stand your ground and make yourself heard (which is not easy). It makes no difference how long you have epilepsy at every appointment you are still scared of what will transpire. You only remember what you can the frustration you feel, I am sorry. All doctors appointment are scary if you let the doctors intimidate you. So do not be scared, just do your best.

Well, looking back anything that made my already hyper brain excited,made me literally crash, new environments/people used to make me get my words mixed up and couldn't speak, and I used to just get this fixed fake looking grin on my face I guess trying to cover that there was something triggering my brain subconsciously I kind of knew I guess , a new job my first day I was found in the corridor on the floor and sent me home, now looking back it is exactly the same as what im having now, I remember feeling lucid, and like I was going to be violently sick and then speaking to someone outside the restrooms and that numb tingling cold draining sensation in my head arms and hands, also I couldn't tell you how many times I fell off horses and don't remember hitting the floor but having the same like I was flying lucid dream states .... and that was easily 6+ years ago.... wow things that make you go hmmmmm !
gaining confidence in my suspicions is very strangely empowering ?!?!
thankfully I don't ride horses nor drive any more

 

[Fedup]

holly

You will remember and you want answers so you are not going to let any doctors appointment scare you, like you said it is strangely empowering in a good way. You can do all this and you will have no problem. People who have been diagnosed in there adult life have all gone through the same as you, but everybody has done something different to you, but the outcome is the same, strength and will power to get them through this time and you are going to find all that. You need to think of every little thing no matter how small or how unsure you are.

 

[holly]

I totally agree with you, finally im calming down and realizing what I have to do not dwelling on the what ifs, even tho I still feel very odd today with the finally subsided headache, and the little things im realizing could be related finally I think im finding answers and some sanity in talking to you guys here mostly you tho Fedup(liam) I think I saw is your name right? ... thank you ! I am an information freak I don't stop until I have exhausted myself and every possibility which in its self is draining, but finally I think im on the right track and getting the answers and help I need, and hopefully my experiences and feelings will help others in my situation of just feeling crappy as I have the past few days .... thank you again !!

 

[Cint]

My seizures didn't start until I was 22 years old. But they did start out as SP and slowly progressed to CP and eventually TC's. When they first started out, I knew something wasn't right. I started feeling those "faint feelings", and sometimes for a brief moment that seemed like an eternity at the time, I felt like I was in "neverland". Just an odd sensation would overcome me. I knew something was not right in my body. I had gone to my primary care dr. He said I was hypoglycemic and prescribed some med for that, without any testing. The seizures slowly increased in intensity and severity and eventually I ended up in the ER with severe burns because of a TC in the shower.

Trust your hindsight/intuition. You know how you feel.

 

[QueenieKP]

I wasn't diagnosed fir seizure activity until I was 17, but I sustained a head injury when I was 6 years old and after that my mum said I would violently throw myself out of bed in my sleep and she wondered with hindsight if they were nocturnal seizures.

At 14 I had 'fainting' spells a lot but that was put down to puberty and my mum's personal favourites hypothesis being vegetarian and listening to Iron Madien.

I did the whole poking with the epilepsy spoon at 17 after my first tonic clonic.

Q

 

[holly]

My seizures didn't start until I was 22 years old. But they did start out as SP and slowly progressed to CP and eventually TC's. When they first started out, I knew something wasn't right. I started feeling those "faint feelings", and sometimes for a brief moment that seemed like an eternity at the time, I felt like I was in "neverland". Just an odd sensation would overcome me. I knew something was not right in my body. I had gone to my primary care dr. He said I was hypoglycemic and prescribed some med for that, without any testing. The seizures slowly increased in intensity and severity and eventually I ended up in the ER with severe burns because of a TC in the shower.

Trust your hindsight/intuition. You know how you feel.

now I have sat and thought about it, and thought some more, I am almost positive that is what has been happening to me from high school age, possibly younger, and over 6 years there getting stronger more persistent and this week almost unbearable, I feel like im walking on thin ice, and im fearful that I will too have TC if I don't act, im so sorry you had the TC and burned in the shower

thank you guys for reassuring me that im not a complete loonatic and that this is something serious enough that I should get it under control as soon as I can.... thank you so much for your support and to know im not alone

 

[marths]

hi to everyone. that's a good question.Apparently i've been having auras since i was 13 strange smells,deja vu and staring episodes.Nothing was thought of these things in fact my family thought i was alittle off kilter so to speak and laugh it off. here i am today with seizures and taking lamictal. so don;t be afraid to remember if anything was amiss in your younger days.

 

[holly]

hi to everyone. that's a good question.Apparently i've been having auras since i was 13 strange smells,deja vu and staring episodes.Nothing was thought of these things in fact my family thought i was alittle off kilter so to speak and laugh it off. here i am today with seizures and taking lamictal. so don;t be afraid to remember if anything was amiss in your younger days.

it really is a strange thing to think you were just kind of an odd child that you would be speaking to your friends and then pause stare and forget completely what you were talking about..... and to now realize all along it may be epilepsy! 20 years I have prolly experienced this for and not realized until now this week .... wow

and thank you Marths... my family and friends used to do and say the same things about me I was a hyper child then would forget everything I was doing and start again hahaha

 

[Cint]

my family and friends used to do and say the same things about me I was a hyper child then would forget everything I was doing and start again hahaha

Sorry your family didn't realize something else was going on. I had a child who was actually diagnosed as a child with ADHD while growing up, but he never did forget everything he was doing. He just was 'too busy' to focus. There is a huge difference in hyperactivity and 'zoning out' for a few minutes while experiencing a SP seizure.

 

[holly]

im having like a whole awakening realizing that my vivid dreaming, smells, story's (trying to explain to my drunk mother) strange behaviors and falling off my horses in euphoric state and not remembering hitting the floor may well have a different reason than me being klutzy ditzy or a hyper "problem child" haha WOW..... I feel strangely liberated by this now I know that I wasn't just "weird"
the way I have always tried to explain to people that I often loose track of what im saying and to bare with me, imagine a supercar on a street getting faster and faster its going to eventually crash and that's me to a tee!! my head is exactly like that, instantly people think im crazy but I have always tried to explain that I have a hard time with certain communicational skills and paying attention