Seizures- what I did not know and how it is a relief to finally understand

General
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Guys and gals, I did not know, like so many others, that there are many types of seizures. We mostly think of those who collapse, jerking and twitching. These types of seizures are commonly known. Most also know about the catatonic type. Victims of these two types are sterotypical to the thoughts of most when you say the word seizure.

There are more!

I found out by looking it up. I have been having some very strange symptoms, ones I would not even share with my doctor. Worried I was going crazy, I kept theses problems to myself. I thought at times it was simply part of the lupus, maybe due to inflammation or vertigo. Who knows?! But after looking into it, I found out that what I am experiencing is one of two symptoms listen on the lupus list that I was so sure I did not have. A symptom of lupus that scared me to no end because of a stereotype in my head. I did not want to worry others by being a victim to seizures. Turns out, I have been having a type of seizure called Patrial Seizures for over two years. I just did not know that it was a seizure.

I can be having a conversation, doing my job, walking, reading, or simply thinking, and then it happens. Others do not notice. Well, for the most part. My mom says that at times I make faces. She honestly thought, for over a year now, that I was cruely making faces at her. She cried when she told me. She had h feelings hurt because all this time she thought me cruel and felt I would simply not admit it. Turns out I even stick my tongue out a bit some times when it happens. Not cool, but at least I am not harming myself.

To be clear, if you are a victim of seizures, it is not something you should be embarrassed over. Yes, it may sting your pride a bit, as it does mine. Ya know what, though? I didn’t request this problem. We did not ask for Lupus or any of it’s friends. So if someone wants to be mean to us or talk nasty becaue we have a issue that we can not control, they are not worth our time! They do not deserve our wonderful, loving, open, and fabulous selves. Remember that!

So,with this new discover comes lots of questions on my end. This is where you guys come in. Tell me about your own seizures, especially those who have the same kind. What treatment, if any, do you take? I want to hear about your symptoms, your auras you get before the seizures, ect.

Thank you, as always, for freely sharing. I am also happy to answer questions for you guys. Please, if you have symptoms, especially scary or embarrassing ones, share them with your doctor. I can’t wait to get to talk to mine about this. It is such a Huge relief to know I am not going crazy.

Love you all,
Mindy

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I can't remember what kind they diagnosed me with,, im thinking it was partial complex. Not 100% sure though. I just black out and stair into space. Looking back i have had them for 2 or more years. My friends would tell me to stop starring or they would ask what are looking at. I never know when im having one unless im doing something like pouring a glass of juice and the next thing its all over the floor. I would have any where between 3-10 "spells" a day. My mom would notice as my speech would get a slow and slurred and then she would see my blank stair. I also have the auras with them. I smell wierd stuff, burnt toast, rubber, or just odd smells i cant even explain. They were only a few seconds long. The scariest thing is i had a spell the summer before being diagnosed while driving. I ran a stop sign and totaled my car. I only remeber waking up with my car door wide open and the car half way on the road and half way on the curb. Dont ever remember seeing the stop sign or the truck that t-boned me. I am know on kepra and gabapentin, they are trying to slowly work me off the kepra and are planning to just try the gabapentin. I notice if i am tired or am late on my morning dose i have my auras. So i have not driven in a yr and have no plan to drive till its in control. Its scary to know i went so long without knowing! My PCP thinks that i have had lupus for years and the stress, mono, and over working just triggered it.

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I can’t even imagine the terrible feeling you had Louters when you came out of the seizure to find your car totaled! I have been tested for seizures when I was a kid because I would do the staring thing and once recently and both times the test was normal. I smell weird smells and sometimes can’t remember complete conversations that my wife and daughter say I’ve had with them. I also have these bouts of times when I can’t speak right. Like if I want a cup of coffee I might say "I can cof a cuppee? Then we all laugh. The first time that happened, I was doing it for a week and we couldn’t figure out why I was doing it then I had problems choking on food and drink. Finally we went to the ER because I was acting slower and couldn’t concentrate. I was having a stroke! Now the left side of my throat and the back of my tongue are paralyzed. I have the talking backwards thing on and off all the time now, only go to the ER if I start the slow thing. So I guess I am having TIAs. I am on Warfarin and Aspirin and yet still have them. It’s scary how close the symptoms are to seizures. I take Neurontin also, but for Neuropathy.

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I have a Lupie friend who has myoclonic seizures. Her arm or leg will just throw itself out like a kick or like hitting someone. When I told her that I have muscle jerks that have caused me to fall and break my ankle, or ones so small that it feels like a bug walking on my hand, she said those are milder myoclonic seizures. I looked into it, and realized that I even have internal seizures that suddenly double me up by making my gut seize up, and my heart and esophagus "spasms" too. I remember a little girl that lived next to us who was diagnosed with internal seizures and she would have instant, unbearable abdominal pain, then after a few minutes, she'd improve, but would go to sleep like after the grand-mal/tonic-clonic seizures..

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Mindy, I was in awe that I didn’t know there were so many different types of seizures. I looked them up too.

Cam

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I have lots of them where I feel like bugs are crawling on me in one area or all over. Then other times when it is a feeling of my nerve endings spamming in various places or just on my head. It drives me crazy. Just now I had one in which my finger kept twitching for over a minute. Then it stops.
Obviously I have much to discuss with my doctor. Time to tell her the other stuff and get a sour look from her. Lol. I am sure I will be sent with tail between legs to a neurologist.

I will look into the myoclonic ones too. Thank you!


Sheila W. said:

I have a Lupie friend who has myoclonic seizures. Her arm or leg will just throw itself out like a kick or like hitting someone. When I told her that I have muscle jerks that have caused me to fall and break my ankle, or ones so small that it feels like a bug walking on my hand, she said those are milder myoclonic seizures. I looked into it, and realized that I even have internal seizures that suddenly double me up by making my gut seize up, and my heart and esophagus "spasms" too. I remember a little girl that lived next to us who was diagnosed with internal seizures and she would have instant, unbearable abdominal pain, then after a few minutes, she'd improve, but would go to sleep like after the grand-mal/tonic-clonic seizures..

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Mindy, I didn't know there were so many types of seizures....I had all types of seizures also. I was on high does of Keppra and Vimpat and something else I can't remember. I couldn't do a lot of things because I was afraid..... I remember one time after I was coming home from a massage, and called the girl, and asked her if I was acting funny....I have no memory of driving home. I get those staring kinds also....One time I was in the ER because we weren't sure if I was having some sort of 'different' type of seizure or a stroke.. Sometimes I remember what's happening during them and sometimes I don't. This time I was somewhat aware of what was going on. I wasn't thrashing around and the ER doc said I wasn't have a seizure, and my husband "yes she is" so the head nurse asked if I had the starring kind he said "yes", and ran and got some meds to put in my IV....they did a CT scan, and I had a seizure and TIA....It was scarry to me that the ER doc didn't know what was going on. I was lucky that my husband was with me, and knew me well. My Nuero dr. sent me to USF working school hospital near where we live, I was there for a week, hooked up to all kinds of monitors, and they adjusted my meds, and am doing much better now, I'm happy to say. One time I had a out-patient EEG at home...I had my head all wrapped up like a mummy, so since I had to video tape myself 24/7...I put a fake red rose on my 'turbin' and waved to the camera all the time. I figure if you have to be in hell, you might as have a little fun along the way. I hope all of us that have seizures have people around us that can see us, and help us when we can't help ourselves. Good luck to all of us. Feel better

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My sisters has had small seizures for years. She does not have an autoimmune problem, like I do. She has slight hand tremors sometimes, blanks out sometimes, and her face draws sometimes, she doesn't drive but they are managed by medication. She has it happen in some form a couple times a month. Her neurologist suggested a new laser surgery for her just today, that has been completely successful in all cases so far.

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Hi Mindy,I donot have that type of seizure I have the one where I chew on my tongue loose my bowels and all control of my body I was born with a spot on my brain , My mom was told I had seixures they say it is not passed on but my dead rest his soul had the same.I have to watch my stress level and now with lupus more then ever ,I am a vocal person I speak what is on my mind when others are being cruel or ugly I let them have it in a polite way,My father always said it is not what you say it is how you say it.Saying whats on my mind helps alot because I donot let things or people get to me because I know it will change my mood,blood pressure and stress level it has worked for me,I havenot had a seizure in over 20years I take my meds and I donot drink.I thought after my divorce I would have one it was so stresful but I took it to God and all was good,Been taking care mu mother for over 20 years,I have a dog he is 14 and 2 cats.Now dignosed with Lupus 2012 car accident 2011 and layed off my job 2014 and my mom had back surgery 2013 and all was really on me,Still Know seizure,I am happy you find out cause not knowing what is wrong is the worst feeling of them all,Take care I am exhausted looking for a job is a job.

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Thank you so much for the links! My next big scare is that the doctor will want me on medication (as if we don’t take enough pills every day for Lupus?!). Doing things naturally by means of diet sounds great. I had to give up gluten years ago. If I can do that, I can do anything! (2 Sam 22:29-33)

Thank you to all of you for being so open, honest, and giving. It makes my heart rejoyce to see so many others sharing. It absolutely makes me feel better to know that I am not alone. I know it is a small comfort to us, but it is comfort. (Rev 21:3,4)

Right now, I am dealing with some back lash from my mom for not having been more open with her all this time. It’s hard to explain how embarrassing these things can be. After all, if you think you may be going crazy, you are not likely to discuss it with your mother. Lol

Love to you all.