Anyone with nocturnal only seizures?

Hi @baa Good Morning
I have sent you a private message.
With Covid, my sessions with my neuropsychologist have become virtual and we keep it this way (I do not drive anymore and going to her office took me about 90 minutes with the traffic over here in this big city). I have adapted well to it. This could be perhaps an alternative to you?
I have just seen a documentary called Resignify that addresses much anxiety and depression. Unfortunately, it is not available in the States yet. As this documentary has shown, based on scientific research, exercising and a Mediterranean diet can be very helpful in treating depression and anxiety. In one group, it was given an anti-depressive and in the other one, they would exercise (fast walking for 30 minutes 3 x a week), having both groups the same results in treating depression.
But I do understand that for you to get out of this depression it is necessary to change medication, as I do understand that Vimpat (Lacosamide) does collaborate much to this situation. When I stopped taking Vimpat, the depression did not go away. What helped me much at this time were my sessions with my neuropsychologist, yoga, exercise, and TMS (transcranial magnetic stimulation) treatment. I was so bad that I did not have the mood to participate in support groups. Do get help, please!!!
"Meditation, in addition to psychologists and psychiatrists, helped me get out of depression. It helped me calm down, center myself, and recognize my pain. With meditation, I began to observe what each pain felt like. Meditation helps bring out the emotional garbage that you have been living with for many years and hiding under the rug. But there comes a time when you can't hide it anymore. – Fernando Scherer (Brazilian Olympic Swimming Medalist) - Extract from the Documentary Resignify
Chris (Santosha)

Baa
It's pretty easy to slip into depression and feel helpless and hopeless when you're not armed with medical information. I am assume you live alone and no one can verify the type and length of your night seizure? Your doctor needs to know the seizure frequency, duration, do you sit up, or only lie down, do you turn your head to one particular direction? Start with a good sleep study, invest in a digital health fitness watch that will monitor your activity, blood pressure, heart rate, and particular your sleep. Most of these watches graph out your sleep cycle by color code for the night into deep, light and awake periods throughout the night. If the watch shows awake periods in the middle of the night and your heart rate graph shows increased heat rate during those same periods, most like you just had a seizure and never knew it it. Most of these health watches upload your daily data to an app on your phone, so you can print it out, and share it with your doctor/s. Let's be honest, no one is going to solve every problem you have UNLESS, you are totally engaged and armed with facts. You can be passive or your own activist, the choice is yours. During the last 25 years of being my son's caregiver, activist and sometimes protestor , I've noticed doctors that help the most are the ones that sense your engagement. Take the advice off an old man, don't be a helpless victim, be strong, be engaged, go kick butt.
Depending on your resources, there is a wearable device called called "Empatica Watch". It is specifically designed to monitor seizures in real time and email someone that your having a seizure. I think we paid about $500 for my son's. Start first with the fitness watch and build your bank of data.
Knowledge is empowering, do this and better this week happen in your life, I promise!

Always after my nocturnal seizures I wake up very tired and weak. Within 36 hours every muscle in my body aches. My seizures occur between one to three years apart. I decided years ago to stop the meds, because of the side effects and deal with the sore muscles.

@kkendrick5
I’m curious if your seizures have increased in frequency or severity or have changed in any way. Any daytime or focal seizures?
Jake

I only have nocturnal ones as well but I can only go for max of 2/3 mo thx before one comes on. I will never understand why

Thank you so much for your information and inspiration.
I read most of your writings because I am here for My lovely young beautiful sharp daughter who I think is loosing a battle and becoming addicted to alcohol as a short term fix. She is a party animal. A great dancer. She is always there for everyone and wants to look strong and is always giving, but never talks about her own struggles and feelings. She graduated from the university to become a teacher and travelled all the way from Canada to Bangkok to teach and gain knowledge. Very curious and loving creature. Adventurous .
Seizures always happen in am or during sleep.
Our only neurologist in the city is overbooked and is not focuses on epilepsy. Occasionally this kiddo takes CBD but doesn’t have a routine. I know for a fact that alcohol, sleep deprivation, stress, , THC and various energy drinks are a trigger.
Also, when she’s got her Mirena IUD during Covid times, seizures skyrocketed and GP refused to grant a blood test, but after insisting for a test- - it showed lower level of Lamotrigine in blood, so the dose had to go up.
My heart goes out to everyone who battles this or whose family member experiences it.
I have been dreaming of all cool things like her having a clean and maybe a little less exciting life. She is young. It’s her life and she is the captain of her own ship. How can I help?

Hi @alla1967alla
I am very sorry for the experience you are going through with your daughter.
I have tried Mirena IUD in the past, before knowing I had epilepsy. I had constant bleeding and my gynecologist said it did not work for me and took it out. For women who have not had children, like me and your daughter I understand, Mirena might not work. So, to reduce my seizures triggered by my period, my gynecologist has prescribed a birth control pill with pausing 2/3 times a year. I take the pill without pausing for 4 to 5 months. It has been helpful to reduce my seizures from my periods.
Does your daughter have the support of a psychologist or neuropsychologist? This can be of great help and support in those times she is facing.
You said that the neurologist in your city is overbooked and not specialized in epilepsy. Nowadays, it has become much easier to consult a doctor online. The Epilepsy Foundation 24/7 line could help you with that, giving recommendations to doctors and neuropsychiatrists who work online and who are specialized in epilepsy. Give it a try! Here is the link: https://www.epilepsy.com/247-helpline
Wishing you both more colorful days!
Chris (Santosha)

Dear Chris
Thank you for sharing your knowledge and kindness.
Yes- I will call that number- I appreciate it.
Wish you happy holidays!
Alla

Dear Alla,
My pleasure!!!
As a Brazilian writer once wrote:
“I didn't win every time I fought, but I lost every time when I stopped fighting” – Cecília Meireles
Have a great end of the year!
Chris (Santosha)