I feel like I’m the only one…but I’m hoping that’s not true. I’ve been having my seizures again for 3 days now 2x in the day. It’s hard especially when having a 1yr. Old because I’m so exhausted afterwards or I pass out for a couple of hours immediately after having one. Thank goodness I have my Fiancé, Mother, & Grandmother that help look after my daughter.
However, I don’t have seizures with every flare up, but when I do I feel so defeated & beat myself up because I feel as though I’m missing out on things, especially with my child. I also have fears because of a past flare up ; for 3months I had sezuires 10x a day & I was unable to care for myself & my child. My mother & Grandmother stepped in & solely took care of her.
I’m 21 & I guess I’m just afraid of missing out on things, & frustrated that I can’t be a regular full time mom, companion, daughter, friend etc. with all these flare ups.
This is sad to hear. So sorry you are experiencing this, especially to this degree! I have the occasional seizure. I live in the middle of nowhere, so have to take my chances driving, or else the animals here would starve, along with myself. I seem to only be aware of having the seizures at night tho, so I don't drive at night anymore. Must have something to do with being or getting tired. I am taking a supplement called Taurine by a company named Thorne, and was told by my holistic practitioner that it might help with them. This is one of those things where it isn't possible to tell if it helps or not, unless you could wind back time. You might look into trying it out. You never know.
I had my first seizures back in the late 80’s went on to marry, had my miracle son and now he is 19. The seizures were controlled for many years by medication, every once n awhile I will suffer one although not to the degree that they were. I too felt the same wy that I would not be able to be a good mother, wife etc… I found what was really most important to my son was quality not quantity. I may have had ( and still do including today as I lay here typing while I am on the couch) when I could not be doing things with him but wen I could I gave him my full attention and love. This is what made the difference for we have a wonderful relationship and he is a great boy who does not drink, smoke or do drugs and is going off to university in a few weeks. And guess what ? I even ended up raising him totally alone for the past 8 years as his father is the one who could to step up to the “parenting plate” and he has no chronic illness at all. So you see you an do it…SUCESS IS 90% ATTITUDE . I think my sadness comes in my memory losses that I suffer due to the seizures and neurological problems. I have many blank pages in my life now which include events with my son. When he was younger it really would bother us when we would watch a movie together, read books or go somewhere and i would not remember any of it. This bothers me to no end. He understands better than my own mother and brothers and sisters tho, they don’t get that I have no recollection of certain things. He forgives me. The best thing I can do is be honest with him, “I am sorry honey, Momma’sbrain is tired and I don’t remember it.” As he has gotten older, my honesty has won his respect. A wise psychiatrist told me when he was a few months old at he would grow up with the same attitude about my illness as I relayed to him. So be honest with your daughter , share with her what she can understand at the time. Don’t lie or hide things but also don’t use her as your sounding board. Children will be fearful, they wanted know you are taking the best care you can of yourself. By doing this you will also be setting a wonderful example for her to respect herself and take care of herself . God Bless you and your family… Healing hugs ~Maré
Sandra - first as someone with a movement disorder, fully awake when the seizure type activity happens, know you are not alone, and there is help. My neuro wants to call it myoclonus, but says that only happens on one side of your body, and since my stuff is both sides, am up in the air when it comes to a name for it.
If not already been done, please get referred to a good neurologist whose pet project are patients with seizures. One of those would be the most helpful. You said the seizures are usually during a flare, so I'm guessing you have a lot of stress iin every direction. Coping skills to de-stress are so useful during these times. I use guided meditations, relaxing music, stretching, and breathing exercises to help me (need to do them more).
I hope you seizures come under control soon. How wonderful you have 3 people who love you and your daughter so much and pitch in! warm hugs to you, will try to write more later, rough day here too.
Like so many others, I also have occasional seizures with my flares. I take Depakote on a daily basis and that seems so help immensely. However, like every other symptom, all patients are different and what works for me may not be appropriate for other patients. It is important that you speak with your doctor to see what may work for you. Because they are uncontrollable without proper treatment, it should be addressed to avoid an accident.
Gads, this is the most fun illness, isn't it? NOT! Thanks for the tip, I will check it out next time. I am finding, however, that I am not wanting to drive so far to see my rheumy. It is probably at least 65 miles thru Los Angeles. Scary when you have siezures!
whathappensinvegas said:
Like so many others, I also have occasional seizures with my flares. I take Depakote on a daily basis and that seems so help immensely. However, like every other symptom, all patients are different and what works for me may not be appropriate for other patients. It is important that you speak with your doctor to see what may work for you. Because they are uncontrollable without proper treatment, it should be addressed to avoid an accident.