Hi everyone! I promised myself I would take a break during vacation and cut off the blogging but I'm wide awake at 1:41am and it's raining very, very hard outside. My vacation has been going great! I will definitely post a blog with pictures from my trip to South Padre Island, Texas. So far my family and I have spent many hours enjoying the ocean and the sunshine. The weatherman claimed the weather would be horrible from hurricane (or tropical storm) Alex, but it was quite the contrary. In spite of all the great things to do on the island, we saw Eclipse and I absolutely LOVED it. If you don't know what Eclipse is, it is the third movie about the Twilight series. It's about vampires, which is what turns off so many people. I definitely think everyone should give it a chance, though. And be sure to watch the three movies in order!
I do have an update (a semi-exciting one) on my seizures. I was taking a small nap on the couch today since it was cloudy outside. I had a horrible headache and I felt exhausted. My brother was on the other end of the couch facing me and he claims that I had what seems to be a petite-mal or simple-partial seizure in my sleep. My arms moved back and forth across my upper abdomen/chest area over and over along with the head turning over and over. He claims he tried to wake me, which is funny because I sort of remember. I felt as if I could not wake up because I had no control.
Lately, at night I have been experiencing these mini-seizures. I don't exactly know what they are called but I have researched them for you all. Basically I have them upon awakening (I think). Some people mistake them for "Night Paralysis" which is a strange phenomenon that almost every person experiences at least once in their lives. When you experience Night Paralysis you get a sudden feeling of being held down or crushed and you feel as if you are being suffocated. You also lose the ability to "wake up" or move in most cases until someone touches you or you hear a sound. And, of course, when the phenomenon itself wears off. The length of these cases vary from seconds to minutes to almost an hour.
The difference between the two are hard to find, but can be shown using an EEG monitoring by your neurologist. When I was monitored several times, my EEG showed that I had an abundance of seizures during my sleep. People argue if you can tell you are having a seizure in your sleep, and I am on the side of the argumeent that says you can most definitely tell sometimes. I can tell because the seizure itself seems to wake me from my dreams. I wish I had better words to describe this. I feel the distress and when I wake my mouth is bleeding from the chunks of skin I bite off my cheeks and tongue. I recall even feeling the jerks in my sleep.
All seizures are of course, scary... But I prefer these seizures only because I have less of a risk of falling down and hurting myself too bad. The downside is that I can't always alert a family member. The only way they would know is if they happened to walk in to check on me. It is very important to check on a person with Epilepsy at night because there is always a possibility of a seizure attack during sleep. It is very common because when the brain is in it's state of REM sleep, it sort of "lets it's guard down" making it very easy for a seizure to happen.
A few good things you can do is to buy a big bed for yourself such as a queen size or bigger. This reduces chance of falling off and hurting yourself. You should also practice sleeping on your back or on your side if that is not uncomfortable for you. This reduces chances of suffocation during the seizure. One must never sleep on their stomach because during a seizure your face will press into the pillow causing you to lose air. Some people even use a baby monitor. This may make you feel literally "like a baby," but it's a really good safety tool.
Many people make sounds of distress that they don't even know of... Such as rustling of bed sheets, screams, monotone laughter, etc. Last, but not least, a safety call button. You may have seen these on TV with their famous punch line "I've fallen and I an't get up!". They were made for the elderly, but they an be purchased for anyone from many ompanies. For people who have auras or can sense a seizure coming, this is really something that you might actually need.
I recommend looking into using some of these safety precautions because they really
could save you or a loved one. At first, using these tools may make you feel helpless or old, but you will find that they help get your independence back. I will definitely research more about seizures during sleep and write a good article about it for you all! Seizures, as horrible as they are, are very interesting to learn about, so please inform yourselves as much as possible!
I hope you are all having a blessed day and thanks for following my blog. Please check out my last two blogs and try some of those great products. My next blog will be about my family and our vacation because I got a ton of votes for that blog topic. I might even start doing some Vlogs or Video Blogs on YouTube so get ready for some new things!
Lastly, I want to thank Serene Low for featuring me in her blog called "Serene's Epilepsy Legacy" which you might have already seen. (If you have not already seen her blog, please click the link featured below). Be sure to check out her other blog entries because she has tons of great information about Epilepsy. I am honored to be in your blog, Serene. You are an inspiration to me!
Click here to read Serene's article about me!
Thanks for the update and some very practical advice - hope you have had a great vacation!
ReplyDeleteMandy - I just came upon your blog tonight and have been reading it from your first post. You are a very brave and articulate girl, and you describe many things I know my son must feel sometimes. My 20 year old son has epilepsy, and his seizures occur mostly at night. Needless to say, he is very sleep deprived and tired all the time. He is in the process of "brain mapping" this summer to locate the source of his seizure activity and find out if he is a candidate for surgery. Keep up the good work - you are an encourager to so many!
ReplyDeleteTami,
ReplyDeleteI am very happy to hear that you have enjoyed my blog. The older posts weren't the best but they show a lot of what I was going through and I like to sit and re-read them from time to time.
I am sorry to hear about your son, but the brain mapping will help very much. Once they know where the seizures originate, doctors can pick a better treatment (or even surgery) for him. If he does not qualify for surgery, at least ask if you can give the VNS a try. It took a while to see the effects but it has given me a lot of my life back. I have Grand Mals only once in a while now, which is great because all the other seizures are manageable. If only I didn't have so many of the smaller seizures!
God bless and you will be in my prayers!