Living with epilepsy - Introduce yourself & meet others
Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let's learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. You're likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Hello @mxyzptlk32,
There is a sleep disorder discussion on Connect. @johnbishop and many others may be able to answer this very interesting question that you pose regarding sleep, CPAP machines and seizures/epilepsy.
"...while treatment with nasal continuous positive airway pressure often improves seizure frequency." NCBI.
I know, I know, I am getting a bit excited but this is a slam dunk for my CPAP supplies and no need for another sleep study unless it is associated with a quest for knowledge.
If your doctor hasn't pursued a sleep study with you show them this article. A CPAP machine doesn't just treat sleep apnea.
Do not open a link from an unknown source...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3608109/#:~:text=Comorbid%20sleep%20disorders%20are%20frequent%20in%20patients%20with,continuous%20positive%20airway%20pressure%20often%20improves%20seizure%20frequency
From the NCBI article referred to in previous post, under the heading Co-morbid Sleep Disorders, 1st paragraph
"Causes of excessive daytime sleepiness (EDS) in patients with epilepsy may include nocturnal seizures, sedative effects of AEDs, poor sleep hygiene, and co-morbid primary sleep disorders.41 Patients with epilepsy that have EDS should be evaluated for a concurrent primary sleep disorder, which may worsen a patient's seizure burden."
From the last line 2nd paragraph, same heading and article,
"Co-morbid primary sleep disorders should be aggressively sought and treated to achieve optimal management in patients with epilepsy and EDS.43–46"
From the last line last paragraph, same heading and article,
"One recent study suggests that the level of benefit toward seizure reduction provided by nasal CPAP treatment in epilepsy patients with co-morbid OSA is comparable to the effect of adding on an adjunctive antiepileptic drug for seizure treatment; approximately 50–60% of patients experienced a 50% or greater seizure reduction.50"
OSA-Obstructive Sleep Apnea
AED-Anti Epileptic Drugs
I had an appointment set up with a sleep doctor and they were going to have her see me by telehealth. I didn't want that. I too was wondering if it had anything to do with my seizures. Would that be for seizures I get any time of day or just those at night. I also have nasal congestion and wondered if that would affect things. I have been told I snore and someone mentioned I stopped breathing temporarily but not sure if that happens on a regular basis. Besides, wouldn't I feel tired during the day with sleep apnea?
@mxyzptlk32, I've had the Mayo Clinic Polysomnography (overnight sleep study) which has the CPAP and EEG together. I didn't think I had any issues sleeping because I could fall asleep in a heart beat but the sleep study results were significant for me as my score was pretty high in the obstructive sleep apnea scale.
Polysomnography (sleep study): https://www.mayoclinic.org/tests-procedures/polysomnography/about/pac-20394877
@jakedduck1 has some really good posts in the following discussion that you might find helpful. I think this might be the discussion @hopeful33250 was thinking about when she tagged me.
Seizures while sleeping with a CPAP machine: https://connect.mayoclinic.org/discussion/seziures/
You mentioned you are in the process of changing CPAP suppliers and was wondering about needing another sleep study. I'm pretty sure all you need is a prescription/diagnosis from your doctor that is current. I went through this when I had to purchase a travel CPAP and needed a copy of the prescription in order to purchase the device.
Are you able to get a copy of your diagnosis or prescription from your sleep medicine doctor?
Hi John,
Thanks, I shouldn't have any problems, my primary care has all the information. For that matter my previous supplier has it too. They can't send it to a new supplier though, I asked. Probably some HIPPA violation. I can't even authorize them to send it. Think about that, it is my information. This whole process is a headscratcher to me. If I was in business to sell something I wouldn't be asking a potential customer to prove he/she needed it.
Have the overnight sleep studies always had an EEG? My sleep study was so long ago I don't remember. I am going to have look through my files to see if I still have it. I would like to compare that EEG to my current one to see what, if anything, has changed.
I hadn't seen that post, thanks. I'll read it and get back to you.
@johnbishop @hopeful33250
At one point I said I had read all the posts on epilepsy. Actually I missed a good portion of them. I have more reading to do.
@heal33
I would hang in there on the sleep study, keep calling. I would do the telehealth. Sometimes to get what I want I have to do what they want.
I don't believe the article specifies so I would take that to mean seizures day and night. My EEG shows seizure activity at all times, sleeping or awake. I noticed the decline in seizure activity after starting CPAP when I was awake. I can only assume the same was happening while sleeping.
I will be interested to hear what you find out. Good luck.
@johnbishop
I need to rethink my outlook on a sleep study. I have assumed I am doing everything I can because I have an auto adjusting CPAP machine but it has been years since I had a study done or seen a sleep doctor. I don't think that meets the "aggressively sought" criteria. I'll run this by my neurologist and see what she thinks.
The NCBI article has a section devoted to "Seizures and Antiepileptic Drug Therapies Fragment Sleep" and says in part,
"Seizures themselves also may interrupt sleep, leading to poorly restorative sleep and EDS."
"Patients having nocturnal seizures show reduced sleep efficiency, increased time to first REM period, and increased drowsiness on the MWT.52"
"Most of the older AEDs reduce REM and slow wave sleep, shorten sleep latency, and increase the percentage of Stage 1 and 2 NREM sleep.53"
The problem with snippets is they are easy to take out of context. I recommend reading the section. It is a couple of paragraphs.