Doctor said I could be having absence seizures, wondering if anyone has experienced anything similar

i have absent seizures and a tonic epilepsy i have also had a couple of ca tonic seizures as well what you are describing is very much what happens when i have absent seizures they can be brought on from what you describe from your car accident i suffered brutal treatment as a child to the head and have been having sesiuriers or moments as some people call it since i was five went undisguised till i was 40 i thought that i was just a mental case ant would push them aside now they have put thru the ringer with tests and scans and observation in hospital for 7 days  take not of when you have these sezuriers keep a dairy this should include things like surroundings smell food that you have eaten time weather etc as all of this helps you i have been on so many different meds  it take time to find the wright balance it is not an overnight cure i am now 50 and can say with this new med i have finally gone one month no seizure that i can rember this does not say that i have not had what they call petite mall seizures as some times these happen and i dont know they have happened some times after a seirues i sleep for hours and then forget what happen prior to that day.

hope this helps.ps sorry for the spelling errors i also have problems with that too

Hi Roselle,

I am oh so familiar with your experience. You are doing exactly what you should to deal with your medical condition: reaching out for support and information. I don't know if my advice will help you but I beg of you not to worry. Know that you have had these symptoms/events for close to a year, you've tolerated/experienced them without knowing what they are. When you do get a diagnosis know that the only thing that has changed is you've been empowered by the knowledge of the medical professionals; KNOW you are still the same person.

My experience was similar although I had no known injury that triggered the odd out of body sensations that began when I was 18yo. This is what I felt: it would begin with an "aura" -a knotting nausea in my gut that would creep up to my throat, into my mouth and then inside my head I felt disconnected from myself, overwhelmed with a feeling of deja vu I could see and hear but could not react, could not speak a feeling so strange I thought I'd been abducted by aliens (!) as the first time this happened I'd been sleeping out in a field by myself awaking with a headache having difficulty thinking and finding words an acute and lasting loss of memory of anything of my life, I was so tired and confused for days and then began the auras that went into my head lasting less than a minute but affecting my entire day as I'd have a headache that would not go away I'd be oh so tired finding it difficult to think clearly losing my short term memory and having to nap to get rid of these symptoms.

Intitially I was treated only for the headache by my general practitioner-no referal to a neurologist.  Things got worse in that I no longer had the aura as a warning my world would suddenly be all in my head, that same feeling of not being myself being a different person dissociated from my body and my surroundings and then the dreaded loss of short term memory the headache the tired brain that needed to sleep to feel normal.

I had triggers. When I awoke after a nights sleep if I dozed off again I guaranteed myself a seizure: I learned to get up as soon as I woke up.  They clustered around my menstrual cycle.  I needed to avoid large groups as I'd feel stressed and afraid.  I was so afraid of these feelings. I was diagnosed by a neurologist at 20 yo with partial seizures of unknown origin (aka "etiology"-the majority of seizure have no known cause: no tumor or brain defect etc) through painless tests. You'll probably have the same tests: and EEG (electroencephalogram) that traces the electrical brain patterns from all parts of your brain. The goal is to find to origin of the seizure by trying to make you have one: no sleep the night before, (this stresses your brain), placing electrodes on your head and also monitoring your hearts electrical activity and your blood pressure.  You'll be lying down to sleep then awoken to irritate your brain, they'll use flashing lights to do the same all the while you'll have a medical proffesional there to watch and support you. Scary, but the outcome will drive the engine of medical knowledge to your treatment. You'll have a CT scan of your head-quick and again painless to see if there is an anatomical reason you are having these events.

Take note of what triggers these events. You say you feel you can't control things: know I mean KNOW that you are not out of control as you have no control of any of this: you are not choosing to have a seizure. I finally learned to just let it happen, don't fight because you have no weapon to stop the activity in your brain. I began to experience my seizures as an adventure in my brain So what can you do? You can choose to take care of yourself in ways that can potentially limit these events, things like getting plenty of sleep. There are many others you can research to help you empower yourself with knowledge. 

Know there are medications that can help.  I was initially put on a medication that did not help and had side effects I could not tolerate. The next medication stopped my seizures. I had regular follow ups with my neurologist and at the age of 30 stopped the medication. I haven't had a seizure since. I was however, effected for years but the emotions of my diagnosis of epilepsy. Why? I was young and had no support from my family and there was no organization to reach out to. I felt like "epilepsy" was stamped on my forehead, that I was not the strong healthy intelligent athlete who was going to fufill her dreams and live an enriching life. Once diagnosed and left on my own to deal with a chronic condition I stopped working toward my dreams and became chronically depressed, anxious, and isolated myself. Not one of thee actions enhanced my life in any way.  It took me decades to find a peaceful place in my own head.  I'm crying remembering how lost I was.  I won't say I wish it never happened because that is impossible. It did happen. I can't change that. I learned so much about myself; I know those trying times made me who I am today. It will give me solace if my words help you. You have already reached out for support. Please please know it is normal to be afraid and it is a strong person who asks for help.

I'm with you in spirit. I'll help you in any way I can so that you can face this as a condition not a life sentence.

Sincerely,

Nancy