Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Having an issue I could use help with
Fri, 03/30/2018 - 15:25Topic: Corner Booth
Ok, I'm new here. I'm pretty scared right now with something I'm experiencing and am looking for feedback. I'm 40. I've had seizures since I was 16 due to head trauma. I've always sometimes had auras before the seizures. The original auras consisted I'd just an icky, paranoid feeling and I didn't want to be alone. Kinda like that "impending sense of Doom" feeling some people describe. That lasted for a few years, then the auras were just tastes in my mouth. Now just 2 days ago I started having something weird happen. It started out with me feeling like I've stopped breathing and woke up out of breath. I've also been having very unpleasant dreams. And it's not so much the dreams, it's the.....icky feeling after it that lingers. It reminded me of those "impending sense of Doom" feelings I used to get. Just weird and scary. Some people might think I'm crazy. I've read today about a correlation between nightmares and seizures and about some kind of "sleep seizure". I've only had partial complex and absence seizures. But these weird feelings are scaring the heck outta me. My mind goes to things like brain tumors and such. I also have NF since I was about 2. I've only ever had birth marks from it, but a lot of people in support groups said they never got tumors til in their 40s. Now that really bothers me. I've made another appointment. But in the meantime, can you guys give me any feedback about what's going on. I promise I'm not crazy. I don't think so anyway. Thanks
Comments
Hi. First thing I thought of
Submitted by Loren5 on Wed, 2019-04-10 - 11:17
Hi. First thing I thought of when you said Sleep Seizures is Sleep Apnea. Sleep interupted by restricted or poor breathing. My seizures started when I was 40. 47 now. I had sleep apnea due to being overweight and an almost daily binge drinker. The sleep apnea caused my brain to be starved of oxygen at night. Dr said this caused my seizures. No sign of epilepsy. I quit drinking and lost 80 pounds and havent had a seizure since. The weird aura symptoms don't mean you are mentaly ill. They are juat a side effect of a physical illness. My non-Phd opinion. Ask a doctor about Sleep Apnea and ask about a Sleep Study. Yes, those spooky symptoms you mentioned are wierd and scary. Don't be afraid. Let these symptoms help you. They are just warning you. I look at it this way. Some people need to walk with a cane. Some people need to avoid things that trigger a seizure. You CAN learn what these triggers are and eliminate them. Thank you for sharing your story. It feels good for me to discuss this with someone.
Those scary feelings sound a
Submitted by birdman on Sat, 2018-03-31 - 16:45
Those scary feelings sound a lot like the seizures I get which happen in the temporal lobe. I remember as a child I felt really silly telling my doctors about these weird feelings. I wondered what they though of me as I tried to convey what I felt. And then pediatricians often went out of the room to talk with my mother. That didn't help as it left me feeling my sensations must be so odd they didn't want to let me know how crazy I was. But as the years went on I found neurologists who were not too surprised by my descriptions of scary feelings with sour smell and tastes. Good doctors know this is common with temporal lobe epilepsy. You said you made another appointment. What kind of doctor are you seeing? Don't be afraid to share these odd sensations with doc and also ask specifically if he or she thinks these could be seizures.