I am in my 70's and live alone. My children and grandchildren get together for Christmas after work in the evenings and it is late when I get home. This is the only time everyone can be there. I have been going also in the past but this year, my gut instinct is telling me I should stay home. The reason is, I have complex partial seizures that make me fall sometimes when I get up in the morning. I am on medication for my seizures but this still happens sometimes. I have started waking up at 4 a.m. every morning regardless of how late I am awake the night before. Loss of sleep and stress are my main triggers. It makes me so nervous just thinking of being up so late which this event will cause. Last year, I was so nervous about it that it made me stay awake worrying about having a seizure. Plus, it takes me a while to relax after an event like this so I can go to sleep. If I didn't wake up so early it wouldn't matter but because I do and I can't find a fix for it and live alone, my gut instinct is telling me to not go this year. I would love to go and see everyone but this puts a damper on it. Should I go and risk having a falling seizure the next morning or play it safe and stay home? I just need an opinion from someone that has epilepsy. What would you do?
What would do you?
- Thread starter KathyJJ
- Start date
- Messages
- 17,354
- Reaction score
- 752
- Points
- 263
I would follow your instinct and stay home. Can you do a Christmas Zoom so you can visit with them that way?
And then maybe your can fins a day and time that will work better for you in the future. You can always have Christmas in July.
And then maybe your can fins a day and time that will work better for you in the future. You can always have Christmas in July.
I don't know if we can do zoom or not but that is a good idea to check into. I was also thinking I should trust my "gut instinct" and stay home. I just thought I would get an opinion from others that have seizures and would understand. I should suggest that we should do "Christmas in July" just to see how they reacted. But, they wouldn't be surprised considering who is suggesting it. They think I'm a nut anyway.I would follow your instinct and stay home. Can you do a Christmas Zoom so you can visit with them that way?
And then maybe your can fins a day and time that will work better for you in the future. You can always have Christmas in July.
Thank you for your suggestions.Hi KathyJJ,
I understand where you are coming from just like you, I have complex partial and absence seizures I used to stay home
from family gatherings but I told myself no more and now I make sure that I get together with family and friends and I've
told them all about my seizures so they don't think that much of it if I do have a seizure. What made me change my mind
is realizing that a lot of people don't understand epilepsy and when I got a job working in public school 35 yrs. ago I was
very open telling students and staff about my seizures and they were very understanding. Don't let your epilepsy stop you
from enjoying life and time with others!
What you may want to consider doing is having a sleep study along with an e.e.g. done. I had this done a few yrs. ago
and my Epileptologist found out that I was having seizures in my sleep do to having sleep apnea which I didn't realize
I had. Then I was put on vimpat and told to use CBD oil and since then that form of seizure has stopped and my seizures
are the lowest they have ever been in my life. I wish you only the best of luck and May God Bless You!
Sue
I understand where you are coming from just like you, I have complex partial and absence seizures I used to stay home
from family gatherings but I told myself no more and now I make sure that I get together with family and friends and I've
told them all about my seizures so they don't think that much of it if I do have a seizure. What made me change my mind
is realizing that a lot of people don't understand epilepsy and when I got a job working in public school 35 yrs. ago I was
very open telling students and staff about my seizures and they were very understanding. Don't let your epilepsy stop you
from enjoying life and time with others!
What you may want to consider doing is having a sleep study along with an e.e.g. done. I had this done a few yrs. ago
and my Epileptologist found out that I was having seizures in my sleep do to having sleep apnea which I didn't realize
I had. Then I was put on vimpat and told to use CBD oil and since then that form of seizure has stopped and my seizures
are the lowest they have ever been in my life. I wish you only the best of luck and May God Bless You!
Sue
Thank you for your reply. I researched waking up so early each morning and found that so many people are doing this also. I have a sister-in-law that says that it doesn't matter how late she is awake at night, she still wakes up the same time, which is very early, every morning and she doesn't have seizures. Thanks again!
Ultimately in the end, it's up to you and what you feel is best.
It's not uncommon to fear sleep because of seizures. Been there, done that. It's hard to sleep when you're afraid of having another seizure. It's nice to be awake and think, "I feel okay right now. I don't feel like I'm going to have a seizure." With sleep, that can change sometimes.
I'm not certain if 4 a.m. has been the norm for you because of schedule activities, insomnia, or if it's become a schedule that has settled with you. If I went to bed late and got up at 4 a.m. every day, I know I'd be miserable. I try to sleep in when I can and it helps if I can be in bed by at least 11 p.m. or midnight. Although, I could sleep from 11 a.m. to 3 p.m. the next day and still feel tired so insomnia isn't my problem. For whatever reason, I'm always tired and not resting well, even if I feel like I didn't have a seizure in my sleep. It's important to get more sleep when possible.
Is the worry also that the Christmas gathering is late at night and then not getting enough sleep and waking up early? If that's the case, is it possible to move the gathering to a day they may not work? Or scatter it a bit, hang out with children and grandchildren at more decent hours on their days off or when they have a break in the day for a few minutes? If the worry is the late night and waking up early in the morning, the meeting sounds like it'd be late regardless of virtual call or going in person unless you're able to get into bed and sleep in until later.
If the need is rest then perhaps you could explain that you've been having health struggles and you have to get to bed at a decent hour or get enough sleep?
Perhaps you can stay at home in your comfort zone, and have others come to you to visit if possible? Then, if you need to go lie down you can and you can make sure that one of the kids locks the door on the way out and returns the key the next day or something of the sort?
Perhaps there may be a belated way to celebrate this when things might be a bit better?
I've had gut instincts that told me I should or shouldn't go to places. At times, these gut instincts were right and other times, it was wrong and I regretted not being there, but would still try to tell myself, "Maybe I was better off because I was home. Maybe something bad would've happened had I gone?" and of course I could never be sure. I try to get out when I can and go to gatherings. If I feel a little off or weird or like a seizure is coming on, I tell my husband and be careful and usually excuse myself to go home as I'm not feeling well. Sometimes I'm glad I've gone to things either way, even for a time.
It's not uncommon to fear sleep because of seizures. Been there, done that. It's hard to sleep when you're afraid of having another seizure. It's nice to be awake and think, "I feel okay right now. I don't feel like I'm going to have a seizure." With sleep, that can change sometimes.
I'm not certain if 4 a.m. has been the norm for you because of schedule activities, insomnia, or if it's become a schedule that has settled with you. If I went to bed late and got up at 4 a.m. every day, I know I'd be miserable. I try to sleep in when I can and it helps if I can be in bed by at least 11 p.m. or midnight. Although, I could sleep from 11 a.m. to 3 p.m. the next day and still feel tired so insomnia isn't my problem. For whatever reason, I'm always tired and not resting well, even if I feel like I didn't have a seizure in my sleep. It's important to get more sleep when possible.
Is the worry also that the Christmas gathering is late at night and then not getting enough sleep and waking up early? If that's the case, is it possible to move the gathering to a day they may not work? Or scatter it a bit, hang out with children and grandchildren at more decent hours on their days off or when they have a break in the day for a few minutes? If the worry is the late night and waking up early in the morning, the meeting sounds like it'd be late regardless of virtual call or going in person unless you're able to get into bed and sleep in until later.
If the need is rest then perhaps you could explain that you've been having health struggles and you have to get to bed at a decent hour or get enough sleep?
Perhaps you can stay at home in your comfort zone, and have others come to you to visit if possible? Then, if you need to go lie down you can and you can make sure that one of the kids locks the door on the way out and returns the key the next day or something of the sort?
Perhaps there may be a belated way to celebrate this when things might be a bit better?
I've had gut instincts that told me I should or shouldn't go to places. At times, these gut instincts were right and other times, it was wrong and I regretted not being there, but would still try to tell myself, "Maybe I was better off because I was home. Maybe something bad would've happened had I gone?" and of course I could never be sure. I try to get out when I can and go to gatherings. If I feel a little off or weird or like a seizure is coming on, I tell my husband and be careful and usually excuse myself to go home as I'm not feeling well. Sometimes I'm glad I've gone to things either way, even for a time.
4 a.m. didn't use to be my norm. I would go to bed about 10 or 11 and then sleep late the next morning too. But now, if I wait until 10 or 11, I still wake up at 4 and can't go back to sleep. I have been doing this for several years now. There has been times I was still awake at 12 or 1 but I still woke up at 4 and couldn't go back to sleep. The fear of a seizure wasn't what kept me awake last year when we had it at the same time and I went. When I got home, and went to bed, I was so wound up, I couldn't relax. We have had it at this time for years and it hasn't bothered me until I started waking up at 4 regardless of how late I got in bed the night before. This is the only time that we can have it because so many have to work on the weekends. So, we can't change it to another time. It's not the seizure itself that I am afraid of. It's if I fall, I'm afraid I'll have injuries and won't be able to live by myself and I don't want that. Thanks everyone for your suggestions.
Hi Kathy, I'm 71, and have the same type of seizures. I don't live alone, my wife and I just had our 49th anniversary this week, but I don't drive so I depend on her for that. If I were alone (she's a breast cancer survivor) 
and if I had your circumstances, I would go by gut feel and stay put/stay safe, you will always have other opportunities to see them. I'm sure they love you as much as you do them, and they certainly would understand you wanting to be safe, so don't feel sad or guilty by not going if you don't go. Seems to me there is more risk/possible negative outcome than risk/reward as you have spelled it out.
and if I had your circumstances, I would go by gut feel and stay put/stay safe, you will always have other opportunities to see them. I'm sure they love you as much as you do them, and they certainly would understand you wanting to be safe, so don't feel sad or guilty by not going if you don't go. Seems to me there is more risk/possible negative outcome than risk/reward as you have spelled it out.Thank you everyone! You have made me feel so much better with your support and understanding. It helps so much to talk with people that I know will understand. I learned this when my husband passed away. I had some friends that their spouses had passed away a few years earlier. They told me if I wanted or needed to talk, to call them and I did. That helped a lot too because I knew they understood and you are the same way because you have epilepsy, you understand. I will play it safe and stay home! Thanks again everyone!
I also have simple & complex partials--the complex partials began a little over 20 years ago. I haven't had any tonic-clonic seizures since 1987. They occur w/o any aura & many have put me in dangerous situations. Family & friends know about them & what to do when they see me have one. I live at home with my husband and younger son. Our older son has finished his BS & lives/works in California.
- Messages
- 509
- Reaction score
- 73
- Points
- 133
This is the exact same reason that I don't attend funerals. My Family understands, they send me the little funereal cards and sign for me. When it's an event that others are supposed to be the center of attention, *I* am always concerned that I'll have an episode and become the center of attention instead, so I don't go. I'm with the others. Hope your christmas and new year's day went well. And relatively uneventful.Hi Kathy, I'm 71, and have the same type of seizures. I don't live alone, my wife and I just had our 49th anniversary this week, but I don't drive so I depend on her for that. If I were alone (she's a breast cancer survivor)
Yeah, I 'spoze I'll have to go to my own some day, and like other serious situations that I can't get out of, I may take an extra pill or two if I know the time and day in advance just to avoid any complex partials that may cause someone to become flummoxed... I would make sure of eternity first
- Messages
- 509
- Reaction score
- 73
- Points
- 133
No idea what that means, but I'll drop the topic. Sorry to change the thread.
elizzza811
Stalwart
- Messages
- 604
- Reaction score
- 2
- Points
- 88
Do you wake up at 4:00am from sleep seizures, sort of stumble and stagger? Mine usually occur around 4:00am, too.
- Messages
- 509
- Reaction score
- 73
- Points
- 133
(raising paw) That's about the same for me. IF I have a GM seizure event, it's usually at night, and it's usually because I came to on the floor hurting all over (8-inch-drop so no damage from the fall), head pounding and dizzy, feeling like someone took a baseball bat to me and just had at me all over... that I know I've had one at all, and it's VERY often around that time. Interesting, I wonder why we three have that in common. Coincidence? I'd read somewhere on the Foundation's website that we most often have these seizures around the 18th of any given month and the 27th I think. Hard to recall details for me, but it seems to me that it's around the end of the first week and the beginning of the last week of every month, are the most common times for most of us.
elizza811, I'm sorry it took so long to respond to your question. No, I just wake up and can't go back to sleep. I don't have seizures when this happens and if I get up, I can walk just fine. It's like I have an internal alarm clock that wakes me up each morning at 4 a.m.
Also, I didn't go and I explained it to them just like I did here and they were very understanding about it. Thanks again everyone!
My wake-sleep cycle is very set, too. I generally sleep a little after 10, & I'm up at 4am. The MAX I can sleep is 6.5 hours. Even on the trip we rook for the wedding, despite HAVING to stay at the functions until 12 & 2am, I was awake within 6 hours. After the first one, I was up at 7--barely 6 hours after climbing into bed. The next morning, I was awake just past 8am. I've noticed that if I'm VERY tired, I may actually fall into such a deep sleep that I sleep less than 6 hours!!
Do you think it's because of our seizures or maybe our medications? It makes me wonder and as usual, curious.