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Discuss caring for and managing seizures and epilepsy.

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—Ivy
Community Manager

Hi Ivy, my name is Deidre just checking in to see if anyone has a similar seizure journey as mine. Which is extremely abnormal like my brain wave and me.

Hi Deidre! My name is Mary. I had seizures from 11 months to 40 years old. I no longer have them and would love to share with you. Im not sure that our seizure types are the same but talking is always good. Be in touch, Mary

Hi Mary! Conversation would be much better than frustration. They having put a name on them because they are so strange but to feel unimportant because it not like any seizure that you’ve seen come into you ER is wrong. By the time I had my third seizure one of the nurse’s walking past said she’s doing it again made me feel like what was happening to me wasn’t important because it wasn’t a petite or grandmal seizure. This one was different from all of the others I had a hard time forming my works and thinking straight. I don’t bother telling anyone about them anymore if I have this buzzing in the back of my head I stay home and cancel any plans. I feel trapped and alone I guess I wouldn’t feel like that if I could drive but at this point both of my sons. Even taking a train into NYC seems stressful. I love art museums. I’m just lost all the time with no way out.

Wow! They sound unusual! What type of seizures have you been diagnosed with?

Im not a doc but that sounds serious and diagnosable!

You are definitely not alone. My sone has grand mall seizures every day and sometimes multiple without Levetiracetam (Keppra). If he misses a dose, he will have a seizure. Neurologist specializes in seizures, but they are just people that might not know current information, so you need to be an advocate for yourself and get a great doctor and demand answers.

This incident happened at the hospital I was on the MRI table I told the tech that my head was hurting she turned the lights down for me hoping that it would help. Not even 5 mins. later I was having a seizure waiting for a nurse to put an IV in. The group of drs went from what seemed like 10, then 4, then none, when I had another seizure a nurse was walking pass and said oh she’s doing it again. No one came to check on me.

My neurologist hasn’t been able to put a name on it because they are so strange. I have an abnormal brainwave, and the seizure looks like a person who has been outside for a long period of time and their teeth are chattering with bad shivering. Only my teeth aren’t chattering!🥴 Oddly enough I was online reading about one of the meds I’m on called Onfi they had descriptions of three examples of causes I fit 2 of the 3. One of them described was for a young child but it was 1 of the symptoms. That prove even more how odd my body is.

Yes, they are in a position to know specifically or generally what is happening because it was seen before and not personal to you. It might seem like they don’t care but it is possible that the don’t like that they cannot help you without more work that will hurt you in a different way with needles, medication and such. Most healthcare workers care a great deal, but get people that do not want help and give them a hard time. They become guarded against helping not knowing how they will be treated by the patient. It is what it is. Stay vigilant in being your own advocate and get good people with the right knowledge to help you. You can do it! I wish you the best.

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Hi Deidre…When I had my seizures I was having grand mal, petite mal , and psychomotor seizures…none of these were anything like what you’re talking about. Have any of the docs given any idea what they might be, are there any triggers? Is the teeth chattering part of these episodes at the end of the episode? How aware are you of whats going on around you? Can you talk when thats happening?
I hope you arent upset with me for asking questions…be in touch as you can! Mary

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Btw, ask healthcare workers for the best doctor and/or nurses for you ailments in your area. They will know and will help guide you in the right direction. Sometimes people are lost because the do not ask - it usually that simple. Best wishes.

Ok I’m aware of what is going on when I’m having a seizure when they took me off the MRI table there were 4 people when I went into the er behind me asked why there were so many people in the room someone responded because I was fat. How professional it that?

Sorry, that is so wrong that it deeply saddens me. Not professional or understanding. They would not want to be treated that way. Still, search for the good people (maybe few) to assist you with your questions. Like I said, people do not have what they need because they do not ask - the reverse is true.

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I’ve doing my research on the matter everything that’s wrong with me I know about except this. Every surgery that I’ve needed I’ve read about it and watch it being done on YouTube even when I had to the tumor removed from my pituitary gland in 2014. Doctors at me strangely when they ask if I had any questions then tell them exactly what’s going to be done they only thing I didn’t see in any of that last surgery was the halo that had to be placed on my so my head wouldn’t move. 2015 and 2016 I had total knee and I shoulder replacements done on the way out of recovery. When I woke up my head was wrapped up like a mummy I had no idea when the wrapped my head up apparently I pass out right after that. I was only supposed to be in the hospital 24 hrs which turned into 3 days. My surgeon was like what happened I heard that you were acting up you not suppose to have seizure after my surgery. The second time it happened he just stood next to my bed and shuck his head I don’t know what to do with you. I think that it’s a combination of things that trigger them stress and being over tired. 2014 was the worst year ever many of my loved ones past that year starting with my grandmother in January I didn’t really grieve until a month later I was so angry about thing that had gone on, a friend, my aunt, brother-in-law, mother-in-law, 2 months after that the love of my life died a month and 3 days after his mother. I had my surgery in September he pasted in October we were together 22 years prior to that our son was getting into trouble who had just turned 20 that July. I stopped eating and only drinking water so by time the funeral took place I had lost almost 25 lbs. Then in November our boiler quit we didn’t have heat for almost 2 weeks in the middle of the winter. The snowball started January and kept on going. I still haven’t really come to terms with all that went on his birthday is coming up on the 20th it’s like opening a wound all over again. I think that if I were still working 5 year olds can make you smile whether you want to or not. I’m suppose to be getting a dog on Saturday so hopefully he’ll help me I’m alone most of the time even though my sons live downstairs but they have lives of there own but will come up to check on me. Maybe with Shadow around I won’t think about them so much and maybe learn to smile again.

When I’m over stressed or tired I’ll have a seizure but there has to be other things too I had 4 seizures last week. Sometimes I can go 4 or 5 days with out sleeping because of pain. I have a constant pain I my head the cradle section of my skull the closes steadily from birth and that pain gets worse when I get a migraine I’ve had those since I was 9. When I had the surgery I was migraine free for 2 years it was heaven. When they started they they would sometime last for 2 weeks, light, smell, motion, and sound. As I got older they change but sometimes I have tension headaches with them it’s so much fun. So my never ending search continues. Having pain all day everyday then drop a seizure on top of that. I’m tired all the time sometimes a seizure will wake me up at night that what made my neurologist give me that 48 hr EEG that you have to carry around with you. When I went my results he said i had 6 seizures in one night and got in and out of the bed in slow motion he even showed it to me. He had no answers for me about that he was perplexed a out it himself, he said that he had never seem anything like it before.

Sorry, you definitely have my sympathy and hope your new dog brings joy to your life. I too have been through more than anyone should have to endure. For example, losing my highschool sweetheart/wife to breast cancer in 2013 after 25 years of marriage…and so on. We are survivors. Things happen and we endure. Currently, I’m am being forced to move because of new landlords renovating the units and am home sick with the flue (not sure which type) during this move. Luckily, I have 3 boys that are helping.

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Sadly the dog didn’t work out my sons ex has a 7 yr old that dog went straight for the boy to bite him. I man insisted that the dog loved children. We tried twice to see if the dog just was wired from the ride to our home or just had a problem. He was pushing too hard to get rid of that dog so something had to happen that involved that dog. He said that he was having surgery and wouldn’t be able to care for him since he has 4 kids and is treated like one of them. If this 7 yr old triggered him there was something else going on. He’s teen age son was standing right next to him he look as if he were capable of caring for him he was larger than the father. Then he wanted to charge me $50 for us to me the dog are you kidding me, he said the dog was current with all of his shots and bring food for him until we went to get some. That man brought us a dog bowl, dog treats not food, and no papers. So this wasn’t the first time he pulled this. You have a blessed and be safe.

I pray that you are feeling better and the situation with the renovations and moving works out. Being sick and in pain along with packing and moving are not a good match we did it in November last year. With 2 injured sons and me you can imagine how hard that was.