Headaches & Seizures / Tracking Absence Seizures

Hi guys! Thanks for listening and letting me rant about my worries and the way I am feeling. I know I was pretty vague about why I …


  1. I am an adult who has epilepsy from a genetic disease called Tuberous Sclerosis. I recently had a video recorded sleep study and EEG January 18th. I had 1-2 staring episodes and later on had a different kind of episode that left me with pain in the front and top part of my head. It lasted a while (not certain of the time) but the following day I had a headache from morning until late afternoon. I'm scheduled for a MRI of the head January 31st. After all of the test results are gathered I will be told what is and isn't going on.

  2. So you all having to go through this. As a mom is think we tend to worry when it comes to our kids. My youngest so was sick and I don't know it. he finished all his medication and I thought all was good. he slipped and fell and cut his children open and almost bit his tongue off. I felt so bad and was so worried about him. praying for you all.

  3. Hi there!  Well, I just had an MRI for a newly diagnosed condition called trigeminal neuralgia, spawned from a very strange headache that I got.   You should not worry about an MRI as it doesn't hurt.  He will be asked to lay very still and if he's clausterphobic, they may choose to give him a relaxant.   I'm awaiting results of my MRI.  As for your son's seizures,  try not to let your worries consume you.  I know as a parent that's hard, but just take care of yourself is all I'm trying to say.  I personally think that your son probably falls in the huge majority category – it sounds like he has typical absence seizures that are idiopathic in nature (unknown cause).  If your son exhibited other types of seizures or health issues, then I wouldn't be telling you to not worry.  Absence seizures do not cause brain damage.  Children may have many per day and that may interfere with their ability to learn, until they remediate the seizure.  There is a lot of false information out there and that's because the authors tend to oversimplify and make the classifications work to their point.  Meds work.  I know some Neurologists actually think of childhood absence seizures as benign and wait for spontaneous remission, or if they progress to other syndromal epilepsies, then treat that.  Clearly Aly is bothered by his seizures based on the footage, so I'm sure your doctor will want to treat it pharmacologically.  It sounds though that your doctor is willing to treat aggressively.  Meds work.  For me there was never a trigger identified, but rather the seizures  just randomly occurred.  Good luck!  Thank you for putting the correct information and raising awareness out there!

  4. When I hear seizures and headaches it makes me worry, too. Getting that MRI ASAP is so important. My daughter, Bethany had a life threatening brain tumor 16 years ago. When she was finally correctly diagnosed with a tumor she was at death's door. Not one doctor thought to check for a brain tumor. She has battled with untreatable seizures and other disabilities ever since. You can buy Charlotte's Web CBD oil from https://www.cwhemp.com/ However, like you said, if your doctor is not on board you do risk a visit from CPS. We tried it for 4 months and it made no difference just as no medication ever has. Bethany has a neuro appt on the 31st and we're going to beg him for a medical cannabis prescription. I hope and pray your little guy's MRI is all clear and you find a treatment that controls his seizures. Hugs!

  5. Hang in there. I know it is so difficult to not let your mind wander to worse things. Hope you can find some answers and peace soon for your little one and your family.

  6. If he can stay perfectly still they may not have to knock him out, I imagine though itd be scary for him since it's a small tube and it's relatively loud. Good luck, everything that needs to happen will fall in to place. It's natural as a mom to worry, alyster will likely be just fine.

  7. I get an mri once a year for my brain.. they don't put anyone to sleep for an mri, they may give a valume for anxiety or panic for the confined space. but he's all good sweetie.. and it's quick and easy, and for a kid kinda fun. like your in a space ship..

  8. Couple things: adults don't go to sleep for an MRI. I honestly don't know if kids do but I doubt it. It's a giant, very specific x-ray. No pain but you do have to be very still which I imagine is very difficult for little kids. Praying for you guys!

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