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.

New to the community/questions

Thu, 05/14/2020 - 02:17
Hello everyone! I'm new here and am super thankful for this resource. I 'm 24 and I had my first episode about 3 months ago, and I've had one each month since then. The first one was the strangest thing and I just want to know if anyone has had a similar experience. They always happen at night right as I'm falling asleep or if I wake up in te middle of the night. I get a tingling feeling in my tongue and my heart starts racing, and then it's as if I lose control over my body (but I'm still aware of what's going on). At that point I just feel my eyes fluttering and my face spasming with my arms tensing up. I spoke with my doctors and they said they suspect I'm having seizures, but I haven't been able to get in for an examination because of recent events (which has been a little stressful). With that in mind, did any of you start out with episodes at night, that then started showing up in the day? I'm the most concerned about this I suppose. Thank you and stay safe!


I was HBV (hepatitis B virus)

Submitted by SAMUIK on Thu, 2020-05-14 - 04:13
I was HBV (hepatitis B virus) carrier by birth, I even took Sebivo for 3 years when the stage became acute. I stopped taking the medicine because of the rust of my skin. This year virus is back again at the highest state. So far now I just safeguard my liver by taking honey, and HP Pro. By having enough rest, doing light exercise and avoid alcohol to boost body immunity. April My parents purchased six bottles of HBV herbal formula from (BHHC) BEST HEALTH HERBAL CENTRE for the whole family. I used 2 bottles for 6 weeks just like my parents, now we are completely free from Hepatitis B virus. My family is now enjoying the benefit of healthy life. For more information about BHHC check in their webpage besthealthherbalcentre. c om

Hi,Thank you for posting and

Submitted by Anonymous on Thu, 2020-05-14 - 09:46
Hi,Thank you for posting and we understand your concerns.  Seizures can take on many different forms and affect different people in different ways. To learn more about commonly reported symptoms before, after and during a seizure, visit: . We cannot determine if you’ve been experiencing seizures or not. It’s important that you’re following- up with your healthcare team to explore this further and learn more about seizure safety at while sleeping, here: . Many clinics and offices are now offering telemedicine options for non-emergencies if you’re unable to see your doctor in person currently. Ask your doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you all can utilize, or if they can make any additional recommendations for you. You may want to consider keeping a journal or a diary, to document how your feeling in detail (like you’ve done in your post) and track these episodes you’ve experienced, which will be very helpful to review with your healthcare team. .Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, 

HI and Welcome,I've had

Submitted by birdman on Thu, 2020-05-14 - 21:16
HI and Welcome,I've had epilepsy all my life (>50 yrs).  By the time I was in kinder garden I had the "funny feelings" with a sour smell and taste, a tickle in the stomach, and often a feeling like I'd been in the same place before.  These were all while I was awake.  Before I was out of elementary school I had seizures which left me staring, unaware, and confused.  It wasn't until I was in my mid teens that I started to have seizures in my sleep.  I had no memory of any seizures but I would just wake up with the wet towel on my side.  It was that wet towel that let me know I stirred my family up at night because of a seizure.  So it was during those mid and late teen years that I experienced the "nocturnal seizures".  Since the late teens or early twenties as far as I know most of my seizures have occurred while awake.  Like the person at ConnectHelp suggested keep a diary of the seizures.  Doctors get useful information from EEG's, but probably the most useful information is the history and experience shared by the patient and/ or caregiver.

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