Hi everyone!
I have recently been having sleep siezures after removal of avm, can anyone give me any advice on how to stay safe during these?
I am terrified to sleep if I am home alone! My partner work shifts were he is out till 2/3 am and I wait up until he comes in. This is not good for me a sleep deprivation can cause siezures.
Even any cognitive thoughts that would help with my anxieties! Would be much appreciated thank you.
Can I just say I am not on the site a lot due to computer screen headaches but I do come on whenever I can. Best wishes to all! thank you
I truly understand your concerns. I had a major one where I ended up urinating on my partner, attempted to push him off the bed so I could change the sheets. all he could do was grab and hold me until I calm down. I remember it vaguely. I have taken to sleeping at ana angle using a husband pillow. It keeps me from rolling over onto my front, helping to avoid the possibilty of sleeping face down.
Lynn, Assuming you're taking anticonvulsants, let your neuro know of your seizures so he or she can make adjustments or changes w/ your anticonvulsants, then hopefully you can get the restful sleep you need.
Best wishes.
hey! I have the post-AVM epilepsy thing too. Though I don't think I've ever had a seizure during my sleep, I just sleep in a bunch of pillows and make sure I put pillows on surfaces or anything that I could hit my head on in my sleep. I also put a bean bag on the floor by my bed so if I rolled off I would fall on that. I usually don't have violent seizures though..Or you could just put a mattress on the floor and sleep on that when you're alone so you don't have to worry about getting injured?? I would talk to your neurologist too and see if you can change anti-seizure meds or go up on your dosage. Every time I have one, we either switch or go up in the dosage....
Hi jamie! I know its not funny but you did make me laugh there! I did the same and wet my partner! Woops! :) thank you for your advice! All the very best to you! X
Hi patti! How are you ? Yes i am on meds, they had me on keppra at first but they were making me unable to move untill late afternoon! Not good for me. I like to try and keep myself busy around the house when i can! They then put me on 200mg of Lamotrigine! I have to see my consultant at the end of may so i just need to be patient i suppose! :/ . My previous siezures have been during the day and 5 months apart so i suppose i have it lucky! Im just finding it that bit harder to get my head around the nocturnal siezures. Thanks patti! :) hope your well!
Hi mdiam1, I am so sorry thats happened to you aswell! :(
Yeah thats what im going to do thanks. Sleeping on a matress on the floor sounds like the right thing to do!
I am frightened also that i dont come out of the fit, its grand mals all the time! 6 month ago this happened and i took 2 seizures one after the other and luckily my partner was here, he called the paramedics who had to sedate me! Thats what my fears are but i suppose i need to just try and think differently because theres not a lot i can do apart from hope they find the correct anti seizure med! Take care of you and thanks for your reply! :)
Sure! Glad to help! & they told me the seizures might go away after a while since the brain might heal enough for it to stop…In the time being all we can do is wait & hope… They told me if they don’t last more than 2 minutes, there isn’t anything to worry about…Also, I’m on trileptol & that seems to be working, if you need to switch again…
My son seizures started one and half year after his second craniotomy. He is been on meds for almost 4 years but the seizures are not controlled. Las year he did a MRI that showed a gliosis on spot he had the bleeding. Also a nideo EEG showed the seizures come from the gliosis. Now he will face his third craniotomy in order to remove the gliosis an try to be free from seizures.
Hello Lynn. I haven't had any seizures in bed but I have had many seizures over the last 18mths! At last, my Neuro has been able to get them under control :) as I was having 3 - 4 per week. The very best thing you can do is see your specialist and he/she will work with you to get them under control. I truly understand how scary seizures are, and I look forward to hearing from you that your seizures ARE under control! All the very best to you!!
thank you