Epilepsy Talk
Seizures won’t wait — even during COVID-19 | November 20, 2020
COVID-19 seems to be knocking on everybody’s door. Along with the peril and the terror.
And the possibility of seeing your doctor during these dangerous times seems risky, at best.
So, you can’t see the doctor and they can’t see you.
Because they’re just not available. Except perhaps in a hospital setting, critical care, or maybe in a clinic.
That could means more exposure. More jeopardy. Is it really worth the exposure?
Then, looking forward to a world without COVID-19, there’s still the dilemma of not driving.
Or consider that you live in a remote area. Having to drive hours just for a 15 minute visit.
But the seizures won’t wait. And you can’t wait for however long it will take to make an appointment.
Enter Telemedicine…
Telemedicine offers the opportunity to help resolve some of the problems inherent in epilepsy care, in a timely manner.
This includes access to specialty care, decreased reliance on transportation to clinic appointments, and the potential for family involvement.
With telemedicine, programs can be designed to enhance patient compliance.
What’s more, Telemedicine can be an important factor in follow-up care, and reducing patient costs!
Basically, as it goes, follow‐up visits consist of a brief overview of past and current seizure and medication profile, along with a focused neurological exam.
You discuss issues such as medication side-effects, plans to stop medication or change it. (For that a Seizure Diary is helpful. More on that, in a minute.)
How Does Telemedicine Work?
The advent of the smart phone has been a boon in the advent of sharing information between you, your family, and your physician.
Instant messaging through WhatsApp, social media (e.g., Instagram, Twitter, or Facebook), or the traditional short message service (SMS) allows you to rapidly and directly contact your physician, ask urgent questions and exchange information.
Although it cannot fully substitute traditional face-to-face visits, video teleconferencing provides the opportunity for maintaining a patient–doctor relationship in spite of distance or a pandemic such as COVID-19..
It can address urgent questions, advise on drug-related adverse effects, and sort out other concerns for optimum remote epilepsy management.
And don’t forget electronic seizure diaries which are useful tools for recording seizures, monitoring or identifying provocative factors or triggers.
My choice is Seizure Tracker.
Developed by parents with a son who has intractable epilepsy, Seizure Tracker has become the world’s largest internet and mobile accessible seizure diary worldwide.
The service is free and easy to use online anywhere in the world. You can easily create a new account at www.SeizureTracker.com.
Plus an electronic seizure diary can remind you to take your anti-seizure medications, keep track of your appointments, and help keep track of your progress, along with countless other things.
Imagine, you can capture an epileptic event — like the ictal stage of a seizure — record it on a smartphone and send it to your doctor (using online communication tools, such as instant messaging (e.g., emails or WhatsApp or remote document sharing/file exchange).
Although we don’t know when COVID-19 will end, we do know that we have a new, exciting option…NOW.
And there’s much, much, much more to come.
It’s a brave new world out there!
While we can’t always see eye to eye or face to face, we can embrace the future.
Not to be too dramatic, but our lives may depend upon it.
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Resources:
https://practicalneurology.com/articles/2019-oct/telemedicine-epilepsy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7225695/
https://www.epilepsy.com/article/2020/5/community-corner-covid-19-epilepsy-and-telehealth-visits
https://n.neurology.org/content/92/15_Supplement/P3.5-031
https://www.sciencedirect.com/science/article/abs/pii/S1525505019308807
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2007.01464.x
Tags: COVID-19, Epilepsy, follow-up care, improved access, neurological assessment, pandemic, saved time and money, seizures, technology, telemedicine
12 Comments »
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Epilepsy Talk 
If your non epilc can you still get covid-19.
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Comment by Michele Metzger — November 28, 2020 @ 2:32 AM
For sure. Almost the entire population of people with COVID-19 don’t have epilepsy or other seizure disorders.
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Comment by Phylis Feiner Johnson — November 28, 2020 @ 9:37 AM
Goodevening Phylis and Epilepsy Talk Group 😊🦅❤️. I chuckled and told my husband and children “well I’m already home 24-7 365 days a year already. So now your in training to learn to live with yourselves as well!! 😊🙏🏼🦅😘”. Ya I can only have telephone appointments with my doctors as well now. Thank you for the seizure tracker information I greatly appreciate it 😊🙏🏼🦅❤️. Out of curiosity I’ve been paying attention to all of the “Potential Vaccines” and the drug makers and possible side effects on people with neurological issues or seizures. It’s not often my husband and children will tell me “You are ABSOLUTELY NOT GETTING ANY OF THAT KIND OF VACCINE!!!!!!!”. I never said anything except for “OH PLEASE DON’T TELL ME I CAN’T!!!!!!! Because it only MAKES ME MORE DETERMINED TO DO IT!!!!!!! JUST CAUSE!!”. Lol 😂. But this time around in all honesty I AM NOT SURE EITHER!!!!!!! Between all of us it reminds me of being told one time by my grandma “if all of your friends jumped off the cliff would you?!”. I slowly looked out of the window and then told her “Mom 😬 SOMEONE HAS TO SHOW THEM HOW TOO!!!!!!! And I don’t like being at the back of the line!! 😰😳😘”. On that note does anyone have any thoughts as to whether we get it or not? Thank you and please be well and take care of yourselves 😊🙏🏼🦅❤️😊
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Comment by Kathy S.B — December 1, 2020 @ 9:49 PM
I’m really quite on the fence.
Arthur wants to be the first in line, but like you, without long term results, we just don’t know the consequences.
I don’t know which is worse. The devil you know or the devil you don’t know.
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Comment by Phylis Feiner Johnson — December 2, 2020 @ 9:29 AM
🙏🏼🦅😇❤️😇🦅🙏🏼❤️
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Comment by Kathy S.B — December 4, 2020 @ 5:41 PM
After I called the pharmacy to refill the same medications I’ve been taking for years, all of a sudden the pharmacy tells me I got no more refills left until my Neurologist prescribed the medications again.
Therefore, my neurologist recommends me to visit the hospital to carry out blood test to see the medication level in my blood before continuing to prescribe the same medications for the pharmacy to refill.
Risking the COVID19 pandemic in hospital setting, I managed to go through the hospital laboratory to carry out the blood test.
Receiving my blood test report from the laboratory, my Neurologist went into total panic that my medication TOXIC LEVEL are dangerously too high & I should immidiatly stop taking the medications & visit the hospital emergency room instead.
And yet, my Neurologist sets me up for PHONE APPOINTMENTS ONLY for January 29, 2021, three months after he found out my medication level is DANGEROUSLY TOXIC.
Insisting I can NOT go with out my medications, a very understanding Pharmacist suggests me to visit the EXPRESS CARE section of the hospital & share my ordeal with the attending ER Doctor, risking the infection of COVID19 pandemic in hospital setting again.
The soulful Express Care Doctor & the caring pharmacist sharing my medical records came up with helpful solution, prescribing & refilling my medications with lower dosage to last me for three months, until my “Phone Appointments Only” arrived to the calendar date to simply tell my Neurologist over the phone I can NOT go without the medications & see what my Neurologist is going to come up with.
Going through this difficult circus, may be it’s time to look for a better Neurologist in touch with reality than waiting to hear over the phone from a doctor three months after you run out of medications.
Thanks to the thoughtful Pharmacist & caring ER doctor, I managed to make it this far & share my story with my soulmate on EpilepsyTalk.
Having done with the runtting, I wish you all Happy Holidays!
Gerrie
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Comment by Gerrie — December 2, 2020 @ 2:47 PM
Gerrie, that sure was a lot of COVID-19 you were exposed to.
And a stupid, uncaring doctor.
“I’m so sorry your medication is toxic, come back in 3 months!”
Meanwhile HE doesn’t want to be exposed to COVID-19. HIS time and life are much more important than yours.
I would get a new neuro for AT LEAST a consult before three months go by.
This link may help:
2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
https://epilepsytalk.com/2020/01/08/2020-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
Also, I think you’ll appreciate this article:
Why Your Pharmacist is Your Best Friend
https://epilepsytalk.com/2013/02/20/why-your-pharmacist-is-your-best-friend/
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Comment by Phylis Feiner Johnson — December 2, 2020 @ 3:28 PM
Yes Phylis, All these time, I was much more concerned about having another seizure & end up in the hospital.
And watching the pandemic spread like wildfire & the whole world in panic to avoid of getting infected with the COVID19 virus, I never imagined neither expected myself to be caught in the cross fire of encountering deadly pandemic in the hospital & negligent Neurologist who could careless to prescribe my seizure medications in lower dosage just like the considerate ER Doctor did to resolve my concern for having another seizure.
Thanks to a thoughtful Pharmacist, I managed to avoid having another seizure again, from running out of medication.
My Neurologist failing to come up with alternative options to my concerns has only disqualified himself to fulfill the medical needs to control my seizures therefore may NOT deserve the position I credit him for.
Therefore it’s time to look for better Neurologist I can count on.
Thank you for your helpful information, I’m certain I will find one who could do me good more than what I’ ve been through these difficult times.
Gerrie
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Comment by Gerrie — December 2, 2020 @ 6:13 PM
I’m sorry for all you have had to go through Gerrie!!!!!!! I sure know how that feels In terms of a real BLEEP OF A NEUROLOGIST!!!!!!! Shucks you know I’m not even allowed to go to my doctors appointments right now either (their all on the phone) and thank god/creator my pharmacist actually has my medications dropped off at my house as well!!!!!!! Plus if I happen to be short on any medications he deals directly with the doctor himself to get refills for me ASAP!!!!!!! Doctors and specialists DO NOT DESERVE THE TITLE IF THEY CAN’T LIVE UP TO OR EVEN WORK WITH THEIR PATIENTS TO REMEDY THE SITUATION!!!!!!! Especially IF IT PUTS YOU AND YOUR SAFETY IN ANY FORM OF DANGER!!!!!!! Please take care of yourself and please be well my friend!! 🙏🏼🦅❤️🦅🙏🏼😘😘
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Comment by Kathy S.B — December 8, 2020 @ 2:00 AM
Kathy, Thank you for your deep understanding to what I’ve been through, putting up with the medical oligarchy sworn to “do no harm” setting up phone appointments only, three months after discovering my medication toxic level is extremely high & I should immidiately stop taking my medications & visit the hospital ER nearby, while all along I must avoid the potential risk/exposure to Covid19 pandemic in the process of desperately searching for a way to refill my seizure medications I’ve been prescribed for two decades.
Thanks to this dramatic events, it’s looking like we need to take control of our lives than entrusting our wellbeing to those who’re NOT affected by our medical hardships.
Therefore it’s time to make radical decisions than having to wait for mercy from the same medical oligarchy making our lives more complicated than it’s needs to be.
Good luck to your struggle to fight epilepsy, covid19 & the medical establishment’s bureaucratic nightmare.
Happy Holidays!
Gerrie
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Comment by Gerrie — December 9, 2020 @ 1:15 PM
I completely agree with you Gerrie!!!!! I have made the same argument with my very own family doctor, epitologist and neurologist!! It’s the most frustrating and aggravating feeling in the world!! I’m lucky in the sense that somehow someway I always have someone (be it husband, daughters, friends or family) that will help and assist me when I’m getting to the point of major frustration and no longer have any fight or even talking left in me to help myself either!!!!! I think I referred to it as a “ping pong” or even a “yo-yo” with, and between all doctors!!!!! It helps that I live in a tiny town and everyone know eachother with is why here at home I have a pharmacist (to whom I have had to go head to head with as well in the past) that now knows when I know I’m not in for more medications than I’m already on, but please don’t make me go through rigormortous either!! I wish you had the same luxury as me!!!!! Plus I’m okay and content to be home, but it’s very stressful knowing my husband and children all work critical jobs as essential workers and critical workers as well!!!!!!! So we have no choice but to leave. However we’ve also developed a nice routine when we do come home and even when we first step in our door!!!!!!! I thought and still think even I can be toxic from all the medications too!!!!!!!
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Comment by Kathy S.B — December 15, 2020 @ 8:53 AM
Honestly Gerrie in the most sincere fashion I can think of (because I’ve been through the exact same thing) I COMPLETELY AGREE WITH YOU AND YOUR SITUATION!!!!! Sometimes I wish the EPITOLOGISTS and some neurologist would take the medications we all have to take before they prescribe them to us!!!!!!! And then have to live with the NEGATIVE EFFECTS of having to bring that amount down once we and our bodies are used to them!!!!!!!
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Comment by Kathy S.B — December 13, 2020 @ 8:54 PM