Is a sleeping problem common with epilepsy?? My partner has a really hard time getting and staying asleep. And has more episodes with lack of sleep. We’ve asked his Neuro about it but waiting for a reply seems to take so long. Any thoughts are very welcome.
A more sensitive question to the gents out there. My partner gets a “tingle” down bellow when he has a pre seizure turn/aura but doesn’t always lead to a seizure and when he has a “full on” seizure he’ll quite often get an erection. Dose anyone relate??
Thanks in advance for any thoughts.
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Frost77
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People with epilepsy do have a higher chance of having disturbed sleep than people who don't have epilepsy. And there could be multiple different reasons for this. We have more information about epilepsy and sleep here: epilepsy.org.uk/info/health....
Some people with epilepsy use the word ‘aura’ to describe the feeling they get that warns them they’re about to have a tonic-clonic seizure. The aura is in fact the seizure starting in one side of the brain as a focal aware seizure. The seizure then spreads to affect both sides of the brain. Focal aware seizures can also happen on their own, without developing into another seizure type.
I haven't come across someone who experience's your partners symptoms before. However, the symptoms of focal seizures are extremely varied. This is because the symptoms depend on where in the brain the seizure is happening, and what that part of the brain normally does. For example, if the seizure is happening in an area of the brain that is responsible for sexual arousal, someone may indeed experience a tingling sensation in their genitals and/or an erection.
I hope you hear from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?
Finally, please feel free to contact our helpline team. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5pm and Saturday 10am until 4pm.
I’m 31 and have had epilepsy since I was 15. My sleep through the years has slowly worsened. I struggle with insomnia, and I’m unsure if it’s due to the meds, epilepsy or both. To sleep better I have to work out, and no-phone/tv 2 hours before I go to sleep. I use a sound machine, fan, ear plugs, and black curtains - I’ve become a super light sleeper. Going to bed at the same time everyday is extremely important for me, but I struggle doing it. I also experience more seizures when I don’t sleep well. I hope this helps! It’s about trial and error on what can help your husband sleep more comfortably.
Gina, it sounds like you are doing a great job of caring for yourself and have a wonderful atttitude , so important. I also was diagnosed at age 15 with epilepsy. I do recall light sleeping, now I sleep like a rock. I'm 81 now and had my last seizure at 35 but there have been changes and adjustments with meds along the way. In 2019 after being diagnosed with GCA and put on prednisone, I had to up my meds. I now take 2000mg Keppra, 1 mg clonazepam (since age 15) and primidone, used to be called Mysoline . The prednisone watered down the effectiveness of my maintenance meds, which I had been on for years. Out of the blue, I started having the same auras I had as a teen! I don't mind taking additional meds at all. The Keppra has worked like a charm. Good fortune and health to you!!!💕💕
WoW reading this snippet of your journey with epilepsy is very inspiring as hearing someone has been 46 years since last seizure is a huge ray of hope and sunshine. I know everyone’s story differs but as his seizures have changed from 1 or 2 a week to maybe once a month shows how much better things can be.
I'm so happy to hear that and reach out anytime. I don't know his age..but as I reflect, hormones and changes through the years played a part. That is why I think it is so important to be in the hands of a good neurologist . At one point I had a neurologist who so overmedicated me while I trying to reduce 🙄🙄, I was a mess and wound up at the Mayo Clinic to get straightened out. My heart is with you both...it is a journey indeed, but most of the time the light is there and control comes.💕💕
Thank you! I try. some days are harder than others, but overall I realize how blessed I am, and am grateful for all I can do and the wonderful support I have. Hearing your story makes me happy for you, and only strengthens my hope. I see a new neurologist tomorrow. I’m hoping it goes well and that he is more open minded than my previous neurologist. I’m currently on 1400mg Keppra (2x/day) and 800mg felbatol (2x/day). I’ve been on much more medication than these and was not doing any better. I feel that we just have to go back and try some prescriptions that I have been on before and see how I react. The neurologists think controlled substances is best, and I disagree. Thank you for your well wishes and sharing your story with us 💕 💜
I know it is tough...just the trial and error. You keep listening to your body. I hope the neuro works well with you when you explain what you 'feel'. Now, I feel seizure activity is in good control but had a '20 minute EEG' (ever hear of that?? new neuro) and did 'shoot a few spikes'. I'll be following up with the new doctor but you can imagine I have a few questions and misgivings.
When the gal who did the EEG said we are done, I was floored. She told me that if the 20 minute 'special' showed anything they would schedule me for an 'all night EEG' another thing I'd never heard of. So, the jury is out on this new fellow. I've had many years of testing and this was news to me. I once asked my rheumatologist for the name of a good neuro in my area of Indiana and he directly said, 'there are none'. So we shall see.
Have you tried listening to books, a book you would really be interested in, when you go to bed. Because of my sight, or lack of, I listen to them and always fall asleep when I really don't want to. If it is a good book...you'll look forward to bed~!!!
There is always hope, always....I worked with the Epilepsy Foundation in Indiana years ago and control of seizures is the rule...not the exception.💕💕
Sorry for the super late response! I’ve been dealing with a lot of health stuff unrelated to epilepsy. I like the new neurologist so far.
I’m scheduled for an MRI and after that, I’ll be scheduled for an EMU stay (EEG over night/s). I’ve had this done before but everything has always looked normal. They’re doing these studies in hopes of surgery, I just want to see what they find. I’ve never been pro-surgery for my brain, for myself. There’s a lot of interesting stuff out there for seizure control. I have VNS therapy, I’m not sure if you’ve heard of it. It’s an implant in my chest that is connected to my vagus nerve. When I have a aura, I use a magnet to “scan” over my chest, which then sends signals to the nerves in my brain. This helps me come out of seizures 9/10 times or lessens the severity of a seizure. It’s awesome, except I was not aware of the importance of our vagus nerve when I was talked into getting it. There’s other stuff out there, I should be learning all about it soon. I’ll be happy to share.
I really enjoy audiobooks, and haven’t made time to listen to any lately. I really should make time because it is helpful when trying to go to sleep. Thank you for your suggestion.
So good to hear from you....well, this old dog can always learn new tricks. I was surprised, and encouraged, when you told me about the overnight EEG. I'll not only withhold judgment on this new neuro but am encouraged. I think I am a bit behind the times!! I have heard of the VNS therapy and happy to hear you get such a good measure of control.
Just a little side story....some years back I was purchasing a CPAP machine and in talking with the gentleman told him I had epilepsy. I do that a lot...because everyone knows someone with epilepsy and I think it is good for some folks to see...we have our stuff together. I digress...this man, around 45 told me he had epilepsy and used to have multiple seizures per week in college. He had surgery, I believe an implant of some sort, and had been seizure-free since. Honestly, I don't recall the details and I know I asked all about it.
You have my best wishes with your other health issues...sometimes we are a regular buffet of challenges, but I know you can meet them!💕💕
I've always had problems with sleep, I have Juvenile myoclonic epilepsy, usually had seizures in the morning, since 14, 400+ of the buggers, now nearly 66! Had auras before the event, like an electric shock to the system, whole body goes tense, about 20-30 seconds before, but sleep has always been bad, although certain epilepsy medication could also make sleep almost non-existent? I have been given a final warning, my next seizure, my last! I try to get at least 8 hours a night, but that routine is hard to achieve, I live on my own, disabled for a LONG time, with retirement just around the corner, now blood pressure down, have not had a seizure for three years, pressure, anxiety, stress are my triggers, now a distinct improvement right across the board, including sleep, even my GP and neurologists giving me a 👍! In all the years I've had epilepsy I NEVER checked to see if I had an erection whilst an aura, a bit late now!🙄
Sleep, pressure, stress and anxiety are all HUGE triggers for us. My partner had his first seizure whilst having a cuppa at a friends house when he was 28, 9 years ago now. His is “Temporal lobe Epilepsy” on the left side (I don’t know if that makes any difference). The Neurologist he see’s now has said the damage would have almost definitely happened during childhood but he’s been lucky that his seizures didn’t start happening as a teen. They don’t know why, it just is.
I understand if you don’t want to say or explain why, but, you’ve said your Neuro said your next seizure would be your last, firstly I’m really saddened to hear that but also why is that?? I realise that 400+ seizures is going to take its toll on the brain so I might have just answered my own question.
I wish you all the very best friend and I pray for you to have a stress and anxiety free environment and a good 8 hours a night. 💙
Thanks Frost77 I was affected by severe reactions to AZ vaccine last year, whilst MRI of my skull, 'diagnosed' that a double seizure in 2018 had caused, besides a broken skull, irreputable damage, I have balance issues, another seizure would 'tip the balance', as you say "400+ seizures is going to take its toll on the brain" seemingly if I had another seizure I would not recover!BUT retirement will certainly help getting "to have a stress and anxiety free environment and a good 8 hours a night"
Why would a doctor say your next seizure would be your last? I am 81, experienced control and lack of, but have never heard that. I certainly hope not...for you, me and anyone else.💕
I have epilepsy for 52 years, JME, had over 400 grand mal seizures, broken every rib in my body at one time or other, broken my skull in numerous places, a double seizure in Jan. 2018, whereby a large scar on the right side of my skull became apparent where the skull had broken, the house doctor in the hospital I had been admitted to because of strange reactions, in June/July 2021, later diagnosed as being reactions to AZ vaccine. They took a MRI of my skull and then he told me that the next seizure would probably be my last, in other words the next seizure I had I would not recover from. My balance issues are indirectly caused because of this, shaky hands [essential tremors], pressure on the brain, [turmeric has helped relieve this] Recently last Friday I had an aura which is a warning of a seizure, apparently I had been too active , trying to paint above my head, but just pure experience I was able to calm myself! I have numerous other medical conditions, so in reality, not really surprised at the doctor's diagnosis last July, taken a while but fully come to terms with it.
Dear Aldon, The thought of you thinking that a seizure will be the end of your time on this earth, just saddens me....that your hope and future has this cloud.
I know we are all different and I read your biography. At 81 yoa, I'm on my 74th year with seizures, petit mal and grand mal, enough to mean I had to repeat my senior year in high school, but I made it. Just to give you heart--- I have also had two closed head injuries, brain bleed, concussion, 5 skin cancers, one serious cancer, asthma, essential tremors, bling in one eye, giant cell arteritis, hip replacement, hip revision, four surgeries on right leg, bone graft, rod in right leg, neuropathy, myopathy, inner ear and balance problems.....and I have ridden the roller coaster of seizure free on maintenance meds to so many meds it caused a drug-induced lupus for 8 years and only 3 years ago had to add 2000 mg Keppra because I was experiencing auras.
I neglected to throw in a miscarriage, four female surgeries before a final hysterectomy. Epilepsy and hormones need to be brought into harmony. I do have two grown sons, 53 and 61.
This is no contest and laundry list of illnesses....but I'm just trying to give you hope, hope that you have a wonderful opportunity to live your retirement....and if you 'have an electrical overload', take a nap and breathe deeply, rest. I wish you well💕
Thanks Grammy80 I see you are something similar to myself, one of my specialists has noticed how upbeat I have become in the light of my impending retirement, in a couple of weeks, hopefully a lightening of my load of stress and anxiety, a change would definitely do me good, living on my own for so long, a claustrophobic, vulnerably disabled, in isolation, a release from that will be very welcome in itself. I have been living in an area I abhor, dampening my whole outlook on life, my GP aware of this, always tries to help me in this plight, I could go on, but NEW alternatives are now beginning to blossom after all these years. 👍
I'm so glad, Adlaon. We are limited in what we can control...but unlimited in how we handle it, tough as it is sometimes, when we strive to be positive there are benefits to our health. Ah! retirement is such an opportunity to carve out your own schedule by how you feel. Sending good thoughts to you and hopes for those new alternatives. You are amazing...💕
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