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Simple partial seizure (maybe?) I want to know if anyone else out there understands what I'm going through

Wed, 10/17/2018 - 05:53
About 4 months ago, after going through numerous doctors, I finally found a doctor that listened and believed me when I said that I had epilepsy. However, he is still on the fence about it. Because of the fact that the 24 hour eeg that we did just happened to fall on a day where I felt no symptoms, he decided that he is still 60% sure its simple partial seizure and 40% sure its migraine without the headache (which I know is not true). The reason he is so hesitant about this is because my auras happen almost everyday, but they could last up to 5-10 hours at a time. I can have the symptoms for hours without ever ending up having a seizure, or I can have the symtoms for a few hours and then one more trigger happens that causes a seizure to occur. By these I mean for 5-10 hours I have symptoms that include shallow breathing; heat flashes;sometimes my stomach drops like when you go on a roller coaster; tremors; muscle spasms/twitching; ringing in the ears; shallow breathing; de ja vu; disorientation or what feels like an altered perception of reality meaning I feel like i am not all there mentally, I feel like I am in a dream and my mental processing is very slow. This all brings about intense fear and sometimes i think I see things that are not really there; my anxiety heightens. *the actual seizure: if all of this continues, it eventually leads to what I think (know) is the actual seizure. the simple partial seizure i something that no one around me notices because it only lasts 1 or 2 seconds. However, my vision goes black and it feels as if someone is shining a strobe light through my closed eyelids. Also, it feels as though my head and upper body starts to convulse, even though it doesn't. Now I am just going to give information about my epilepsy and I really hope people can reach out and share similar stories to help me not to feel so crazy. situations that sometimes trigger symptoms, but mostly triggers seizure most likely to occur: -car rides where the light flashes in and our of the car -any situation where a bright light is flashing on and off, such as a fire alarm, strobe light, or T.V. show -looking at objects that have striped or checkered pattern/design -being outside when its too bright -being in any type of shopping mall, store etc. I cannot shop because i almost always have a seizure. example: -the example i am about to mention is what I feel extremely often. Before the medication, it happened two or three times a week. -driving on the highway on a sunny day but there were many trees. the sun was going in and out created a somewhat strobe light effect. This created a sort of strobe light, with the sun shining in and out of the window multiple times a second. All of a sudden I felt as though my heart jumped. I felt a sensation from my head down. It was a sensation hard to explain, kind of like a tingling feeling or like all my blood dropped down and out of my head, as if I could feel my head being deflated. I felt my neck stiffen up. My eyes closed involuntarily because I don’t remember seeing anything but black. But it was not just black, it was like I was staring at a strobe light. After the tingling sensation, I felt my neck kind of stiffen and head start to jerk. I snapped out of it very fast, no one even noticed it happened. It probably lasted 2 or 3 seconds. I was aware of what had just happened because I remember being really anxious about it and scared that it would happen again, except more extreme the next time. I remember being extremely out of it afterward, like my mind was fuzzy and I was living in a dream. Afterward and before, the more light I was exposed to, the more uneasy I felt. I had to put my sunglasses on to block the bright sun. That was not enough though, I still felt like there was a risk it would happen again. I had to put my hands over my eyes the rest of the ride to block all light from my eyes. -the most extreme example happened when my symptoms were heightened to the absolute max. this was before I had ever seen a doctor for this stuff. However, my symptoms were really bad and I was having the simple partial seizures all day that I was trying to ignore. however I was dehydrated, sleep deprived, hungover, etc. The symptoms were increasingly worse, the simple partial seizures were still occurring, and at one point I was looking out the window of the car and remember shouting "oh no oh no oh no" and i guess I started convulsing for about 30-45 seconds. I had a grand mal seizure. I have never heard of anyone who can relate to this. please tell me there is someone out there who does, or has any advice on what may be happened.

Comments

 IT  sounds like your

Submitted by wmi3@aol.com on Fri, 2018-10-19 - 08:39
 IT  sounds like your situation is  fairly complicated at least to me.I do know flashing lights is very often a big cause of seisures in many epileptics and many suffer from that .Also vibrations  from such things as using drills  or lawn mowers or even from various food mixers can be a cause as in my case .Also in my case bad pains are a big cause of my seisures .there are lots of different things that affect different epileptics and no set pattern .I have had Tonic Clonic Epilepsy for 20 years and umpteen medications sadly none have worked up to now but I try not to let it affect me too much .I mean I have seisures pretty often and never get any  warnings at all but worrying about it just brings on stress which is in my case just another trigger so I try not to think about it.In your case you should stress to your doctor how much it upsets you and how much its messing with your mind and you need more certainty about exactly what type of epilepsy it is .When I had my first seizure 20 years ago it was a big shock as I had no clue why .Iknew absolutely nothing about it and just remember waking up in hospital 2 days after I had been admitted and my face was all scratched and cut in places .My daughters came in to see me and told me all about it .Since then I have had countless seisures as I said .One thing I would say is I would not drive if I was you as it is really dangerous .In my case I am barred from driving because of my long term seisures but even if I wasn't I would not attempt too anyway .I wish you luck and hope whatever is your problem it gets sorted quickly .

Hi mariechi97.So many of your

Submitted by jblfavre on Mon, 2018-10-29 - 18:19
Hi mariechi97.So many of your symptoms sound very much like what I've witnessed with my daughter, Jo, and what she's described.  Your descriptions were very vivid and definitely echo Jo's experiences.  She was finally diagnosed in 2009, but had spent the prior 2 years thinking she was going crazy!  Honestly, as her mum, I just thought "oh sh*t, adolescence is SO much worse than anyone told me"!!!!!  Yeah, she was having sz almost daily, had all the classic symptoms, but I was just too ignorant of sz to understand what I was seeing.Jo experiences a variety of seizures; simple partial, complex partial, Tonic Clonic (Grand Mal) she also has panic attacks, which are often a precursor to a TC sz, but not always, just to add to her fun!  I can totally understand the insane symptoms you're feeling and you have my deepest sympathy and understanding.  It's a monstrous affliction - so much more radical than most people understand (even within the medical community).  I have witnessed my daughter literally pulling her hair out and screaming just seconds after she and I were chatting happily while driving along!  Stuff like that is impossible for most people to grasp - let alone for the person living with the big E. I hope just knowing someone understands what you're experiencing, helps in some small way.  You are actually NOT alone in this madness!  I do encourage you to try to find a support group, preferably in person, but of course online is more likely to be available, depending on where you live.  (we are in San Francisco, for which I am eternally grateful due to such great support and help for my daughter - and good public transport, given that she can't drive.)  Hugs!

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