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.

Change in Seizures?

Sun, 04/05/2020 - 19:09
Hi, I am 23 years old and I have had epilepsy for 11 years and am on 200mg Lamictal a day. I used to have seizures where I would pass out but now I would normally have seizures where I feel sick, my vision would be distorted sometimes, my lips would go white, my hands and feet would shake (my head would shake the odd time). Lately, my seizures seem to changing, I have had less warning symptoms and those symptoms are different now - I would just have tingling on the back left side of my head and left thigh. I would still feel the usual confusion and disorientation, and fatigue. The past few weeks, I have had recurring severe dizzy spells. I feel like I’m on a boat. Today, I was taking a nice bath. I was about to wash my hair just as this dizzy spell came on, it’s the worst one I’ve had. First, I felt like I was spinning round on a computer chair then I had the severe feeling of being on a rocking boat in rough seas. I shouted to my dad asking if I should wait until my mum gets home so she can wash my hair as I feel dizzy and he said yes and asked if I would be ok. I decided to try and get out of the bath (was scared in case I would faint or take a seizure in the bath) so I got out. Was drying myself and all of a sudden the dizziness got was worse, my legs were shaking worse than ever, I could barely balance myself. I tried straightening my core/diaphragm but I couldn’t. Afterwards, I have been feeling very fatigued, confused and disorientated as I would after a seizure. My legs are also very sore from shaking so much. That is just a brief description. My neurology appointment was meant to be scheduled for Tuesday (7th April) but was cancelled due to Covid-19. As well as my telephone consultation. Here are my questions: Are my seizures changing? Has anybody with epilepsy ever had this before and have their seizures ever changed? If these dizzy spells are not part of my epilepsy then what could they be? Many Thanks

Comments

Hi,Thank you for posting, and

Submitted by Anonymous on Mon, 2020-04-06 - 08:59
Hi,Thank you for posting, and we understand your concerns. Seizures can take on many different forms and affect different people in different ways. For some, symptoms during a seizure usually are stereotypic (occur the same way or similar each time), or episodic (come and go), and may be unpredictable. It’s important that you’re able to recognize that this feels different from your auras and seizures you’ve experienced previously. It’s also important that you’re following up with your healthcare team to review this further and if you continue to experience any changes in symptoms, side effects, behaviors, moods, or seizure types/ frequency, to help determine what individual treatment plan may be best for you. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. If your symptoms continue or get worse, you may want to call your doctor and if you can reschedule a time to talk via phone/other telehealth resources you can utilize to discuss this further, or if they can make any additional recommendations. Documenting how you’re feeling and the episodes you describe experiencing in detail, (like you’ve done in your post) will be very helpful to review with your healthcare team. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . 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, contactus@efa.org. epilepsy.com/helpline  

Also.. I'm a girl and when I

Submitted by Natty28 on Wed, 2020-04-15 - 08:33
Also.. I'm a girl and when I had the contraceptive implant I noticed a massive increase in my seizures (could be linked to hormones or stress). I mentioned it to my GP and he didnt think anything of it but it's something to bare in mind incase anything like that has changed recently (if you're a girl..)All the best! :) 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.