Hello let me start off with I'm 34 years old and I own the first disc golf store in the US.My health has always been great and I've been a very athletic person. Even danced for a living- I mean hip/hop.techno.club style-even danced in Color Me Bads 1st video. Well about 2 years ago I was strolling thru my store and I felt a little like pop in the middle of my back...within 2 step I hit the floor and couldnt move my legs and could feel it working its way up my body, thank the lord I was able to get to the phone and the only person I was able to dial before I was completly paralized was near my store and they took me to the hospital.9 hours I laid there without being able to move.Not even a finger and the doctors treated me like I was lying and they where very rude. I was burning up so the would give me ice chips here and there and as I laid in that bed sucking on that ice,when no-one was in there with me I choked on the ice and I could'nt move,I couldnt breath and what happened next I'm still thinking about-I was looking up at the ceiling and I knew something bad was happening .then the next I new the whole world around me swirled and I was looking down on myself and I felt, well I felt the most amazing thing -no worries,no problems,only true bliss like I've never felt or could have felt.It sounds a little wierd I know but they say the tunnel of light you see when you pass over isnt really a tunnel and it is. Its like standing on the dance floor in a smoke filled area and a laser light beams thru from a certian point and by time it reachs you its bcome a circle around you and the smoke is I dont know,not smoke,not souls,well I dont know what it was but it was soothing and I loved it. The light isnt at the end of the tunnel,it begins there and radiats around you to comfort you and as I began to relize what was happening....BAM I was back on the hospital bed and I was, well lets say I was madder than Ive ever been.I dont know if it was because the doctors were treating me like I was Lieing about my condition or because I was Back from that place I was just at but I looked down and moved my finger after a little while I was able to move me hand and so forth till I was able to lift myself onto my elbow and I had my friend help me out of there.That was two years ago and since then I have had episodes of 1st off I feel dizzie and sick,really hot and sweat so bad.I mean 1/2 gallon in less than 1 minute but before I can get to the bath room to throw up I just get closer and closer to the ground and then I lose where I am,I cant feel anything. My body just goes numb, I cant move, I cant talk correctly, cant breath and I feel like I'm swallowing my tongue.I,m completly scared.Then as I start to come back around there is a swelling feeling on the lower back of my head and my head is heavy like a bowling ball.This all last between 30 minutes to 5 or 6 hours. confusion and no energy comes after that which last a few days to a couple of weeks. I cant think right and everything around me is falling apart. I've had two spells that I couldnt tell you what I had done for the last few hours. My back and neck are consantly tight and hurt. i've also had a couple of lessor attacks in between all this. I've had 4 of the major attacks and about the same of the lessor attacks but everytime it happens it lingers a little longer. Last one is still with me and its been a month now.Does anyone out there have similar events happen and is there something more wrong than just epilepsy.Any info would be greatly appreciated. I havnt told to many people about the hospital incident.Its really hard to without either feeling stupid or balling like a baby. I really dont know why I told you, maybe it will help someone else out there. Well everyone that my story and I really need some more info so if you can let me know yours. THANKS Jon

Jon,

I am not sure what that sounds like. Almost like a low blood sugar thing but not quite. You have me perplexed over it. It doesn't sound like epilepsy too much unless you are awake for your gran mals. I doubt that but then again, anything is possible.

I have what they call Complex Partial Seizures. I get an aura (warning feeling). This comes in the form of a warped deja vu accompanied by extreem fear like being stuck in front of an oncoming train with no way to escape. Then I tell my family or who ever is around me that I am "going out". I slip into my seizure and those last about 3-5 minutes. My seizures are where I am awake but I am not there. The Lights Are On But No One Is Home. I don't make sence when I talk, I look around for people that I think aren't there but are right in front of me, etc. I then get a postictal (after seizure state)for about 24-48 hours where I have 50-75 'mini' deja vus a day all of them accompanied by fear. I am usually tired and can't concentrate much.

That is what I go thru and surprisingly enough, we are all sort of the same in many ways even though some of us have very different seizures. I don't see any similarity in your story. That is not to say that you are not having seizures, I am just saying that it is like nothing I have ever heard. Has the doctor told you that you have epilepsy?? Have you spoken to a doctor other than that jerk in the ER??

Well, there are many people on this board and they will usually help you to the best of their abilities. Let me know about what a doc has said.

Hope you are feeling better soon.

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Jon

Let me explain how my szrs feel I have suffered from epilepsy for 15 years and have both 'Peti Mal' and 'Grand Mal' - 'Grand Mal' I can't tell you a thing cos I am out for the count -

but 'Peti Mal' are a different story, they start off with what feels like an elastic band around my head, I then get an amazing feeling of fear and de ja vu, then everything gets very bright and voices are far away, my eyesight goes patcy and I loose all concept of day, time and how long I have been out of it, I occasionally wet myself I think I have done that about 5 times in 15 years.

I find 'Peti Mal' szrs harder to recover from than a full blown 'Grand Mal.

Again I would agree with KittyMom your experiences do not sound like your average Epileptic Sezuire as the feeling is usually triggered in the head rather than the body, you can experience tingly feelings in fingers, arms and legs with epilepsy but that is usually just as you are going into a 'Grand Mal' and will start to convulse and will become unconscious.

When you had your first attack, had you been deprived of sleep or food?? did you do anything out of the ordinary???

Again I would ask the same question as KittyMom have you been offered and EEG or Brain Scan - have there been any suggestion of possible Epilepsy???

Let us both know how you are doing - and I hope does not turn out to be E

Take care

Hi,
I've had complex partial and absence (petit mal) seizures for 31 yrs. what you are discribing sounds like a complex partial seizures which lead into a grand mal seizure.
When I have complex partial seizures I get a nervous feeling in the pit of my stomach that feels like butterflies I then start to see colors flashing back and forth in my eyes, but before the seizures were under better control I had hallucinations. I'm unable to talk, I have muscle spasms around my mouth and then I go unconscious for sometimes only a few seconds while there have been times when I've been out of it and wandering around home or at work for about 4o min. if not longer.
If you haven't seen a neurologist or Epileptologist you should consider making an appt. and set up to have an e.e.g., MRI,and Cat scan done.
If you are photosensitive you may be having seizures do to all the lightening when you are dancing, strobe lights are well known to cause a person to have seizures.
Here's wishing you the best of luck and May God Bless You!

Sue