. New here and adding things to my list of things to deal with!

mouse123

New
Messages
7
Reaction score
0
Points
0
Hello all,
Well not sure I wanted to be here but I need information and you all seem so nice. I guess I'll start by saying that I have several medical issues and then this went POW! The other night I didn't know what hit me. My daughter wanted a pizza so I said that we could go get one but that she would have to drive because I wasn't feeling well. I have multiple system atrophy which is a terminal neuro brain disorder and I was having a bad night and my daugher is only 15 and has a permit so I had to go with her but I didn't want to drive, I don't get around very well anymore. So, she was in her pj's and didn't want to go in so I did, I remember ordering the pizza then the next thing I knew I was being taken out of an ambulance at the hospital then nothing again untill I was in the hospital room I was still quite confused and couldn't find the right words to the questions he was asking. What I was told was I ordered the pizza and then just stood there staring and would not respond to anyone. My arms started jerking and shaking, this went on for a while, they tried to see if I was with someone they noticed my daughter in our car (she looks just like me ) they waved her in. She said she was about to come in because she could see me just standing there and she wondered what was taking so long, she knows that I have a hard time standing that long. When she came in I wouldn't respond to her either. They called 911 and tried to get me to sit but I still wouldn't respond. When EMS got there they moved me to a chair and then to the gurney. She said that they took a while to leave to the hospital. This is all so strange to me I don't remember any of it and I'm so thankful that I wasn't driving, the attending doctor did report it and I now can't drive. They did an EEG, some bloodwork and other test the er doc said I had a seizure as did my neuro doc. My neuro doc ordered a 24 hr EEG in home test so I hope that tells me something. I have been reading about seizures and its hard to figure out what kind I had. My neurologist said it was an absent seizure but when I read about that kind it seem to me that they don't last as long as mine did although in the past I have had time lapes or periods where I lose time and I'm like wow what happened. I will ask my daughter the same question maybe 6 times, I really have no memory of asking it and it happens one right after the other, irritates the crap out of her. I have read some of the things that people have read on here and you all seem to know so much. I hope someone has some information that can help.
Thanks so much.
 

ColmanMac

New
Messages
388
Reaction score
0
Points
0
Hi Mouse--Good 2 meet U- Soz can't respond right away- Have had Sz & feel like s###e!- But will get back asap- in meantime ask me NE-thing U want- if it helps check my history on profile- Speak soon & take care- Col.
 

mouse123

New
Messages
7
Reaction score
0
Points
0
Sorry your not doing well today. If you can look at what I posted when your feeling better and see if you recognize anything or what type of sezure it may have been. Any insight you may have would be so nice and helpful. Take care and hope you feel better soon. Thank you for answering my post.
Mouse
 

Cint

Veteran
Supporter
Messages
5,509
Reaction score
0
Points
191
Hi Mouse,

Sorry to hear of your bad incident you and your daughter had to go through.

It sounds somewhat similar to the type of seizures I have experienced thru the years. Mine are complex partial seizures and sometimes they generalize. People say I just stare at them while they speak to me and I don't answer not do I remember anything that was said. They say the seizure itself only lasts maybe a minute or two, but the ictal phase (after the actual seizure) for me can last for hours, depending on the seizure.

Here is some more info on seizures:
http://www.epilepsy.com/EPILEPSY/TYPES_SEIZURES

I hope you find answers soon.
 

mrstocks

New
Messages
32
Reaction score
0
Points
0
For the memory lose pretty common depending on the people, last sunday i have a seizure well a double one and i ask for a glass of water about 10 times lucky my father was there, even the glass in front of me i really wanted a glass of water. My father a wannabe comedians gave 10 glasses of water. I took me about 6/8hours to remember i just won the price (2nd) with my dog in the norming. I had a CT/EEG in the night... nothing (i have had 3 EEG nothing). Other things im sure i don't remember (and how?).

The type of the seizure, i don't know, there isn't enough info.

Last time my seizure lasted 5 or 6mins (without breathing) knocked myself out falling on a stone step (Thus CT) and... well i didn't know i had it pretty scaring fighting with your own brain.
 

Endless

Even Keel
Messages
4,466
Reaction score
0
Points
0
Hi, Mouse,

Welcome to CWE!

I'm so sorry to hear about the multiple system atrophy. It's hard enough to deal with that without anything else on top of it.

From what I've been reading online, seizures can come along with it. If you were standing there but not responding, it most likely would have been either a Complex Partial seizure or an Absence Seizure. Did anyone say how long it lasted? I'm guessing it lasted minutes based on your description. Typically an absence seizure lasts seconds, and a Complex Partial lasts seconds to minutes.

An Absence Seizure is a Generalized Seizure - it involves the whole brain.
A Complex Partial Seizure is a "focal" seizure that only involves one part of the brain.

Here's a link where they talk abou the different kinds of seizures. Click on the seizure types for more information:
http://www.epilepsyfoundation.org/answerplace/medical/seizures/types/

Here's another: http://www.epilepsy.com/epilepsy/types_seizures

Did the emergency room say what they thought was going on?

Be sure to call your neurologist and tell him about this as soon as you can. Sometimes these things can progress over time so he might want to get you on anti-seizure meds.

Big hugs from over here. Know I'm thinking of you.
 

mouse123

New
Messages
7
Reaction score
0
Points
0
Thank you all for answering my post. Clint now that have read more I think your right it seems as though I had a Complex Partial Seizure, although my doctor called it an Absence seizure the one I had last more than a few seconds. In fact it lasted more than a few minutes it lasted much longer than what I have i read most seizures last.
mrstocks the memory loss was the the second scariest part of it all, not knowing where my daughter was was the worst part. The crazy police told her it was ok to drive my car to the hospital with just her permit. GRRRRRRR
Endless having MSA is so hard, I just told my daughter about 3 weeks ago. She knew that I was sick but she didn't know that it was terminal but it was getting to the point that I needed to tell her and then this happened. my luck sucks. I did talk to my neurologist and both he and the ER doc said I had a seizure and the neuro has ordered a 24 hour EEG in home test so I hope that will tell more. I listed the medication that I am on for the seizures on my profile I can't remember the names right now but they are on there if anyone is interested. Thank you all so much for the links and for all the support. Its been a rough few days and then tonight I was going to let my dog in the house and I fell so hard I hit a chair and the couch on the way down almost knocked myself out. I'm chalking this up to not being my week. I'm getting bruises everywhere! Yikes I should be the girl in the plastic bubble.
thanks again,
Mouse
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
Welcome Mouse - sounds like you have been having a rough few days. Sorry to hear that.
My daughter only has had tonic clonic seizures, but more specific, they have been due to a blood sugar imbalance. Making nutritional changes has allowed her to remain seizure free for 7+ months.

I hope you find the information and the support you are searching for here at CWE. You are right when you say we are a "nice" group.
 

huskymom

New
Messages
1,197
Reaction score
0
Points
0
Hi Mouse :hello: Sorry to hear about you having to go to the hospital. My question is....what happened to your pizza? Can you go back and get one on the house :roflmao:

Seriously...I hope that you find the answers that you need and feel better again very soon. Glad to meet ya!
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,500
Reaction score
6
Points
148
Hey Mouse, welcome to CWE!

Sorry to hear about the MSA and recent seizures. Post-seizure it can be tough to keep ahold of details, so it's a good idea to write down questions to ask your doctors, and to write down the answers as well. Information can make coping a little easier. CWE is a great source of info and support, so I hope you feel free to keep asking questions here.

Best,
Nakamova
 

mouse123

New
Messages
7
Reaction score
0
Points
0
HA! No I didn't get the pizza but I guess I kept asking while in the hospital if I paid for it. LOL I don't remember that either. A new development in my new world last night I was going to my family room to let my dog in and Bam! I fell so hard to the floor. I don't think I have ever fallen that hard in my life and believe me I fall tons with MSA that happens a lot. I took out a chair and my arm ended up through the arm of the couch by the time I realized what happened I was on the floor twitching. If I had been a few inches father up my head would have gone through the sliding glass door. OMG's it hurt so bad, thank the lord for large breast they act like air bags! LOL, if I don't laugh I won't stop crying. At first I though well I just fell, but everyone kept saying what happened? Well I don't know what happened and I didn't realize that until I thought about it for a while at first all I could do was try to contain the pain. But, my husband starting asking me questions and I couldn't answer him because i didn't have the answer. I was walking on flat carpet I was looking at the glass door and my best buddy Eddie and wanting to let him in and the next thing I remember is being like 2 inches from the floor and twitching and the Bam! I couldn't get up get up at first my poor son tried to help me but I was unable to move at first. Then he got me up and I tried to act like I was o.k
Well now I'm really scared is this kind of thing going to happen to me all the time. First I freaked my daughter out now my son! This time it was shorter than the last time but still more than a few seconds and I was confused again but the last time I didn't but I wasn't going in a forward motion and I was up against a counter with my hands on it. So what do I do? I called my doctor already and am waiting for a call back. What do you all think? I'm so glad I found all of you I would be lost right now without this place thank you all so much because I'm scared and very sick. I spend 85% of my time alone so I need all the help I can get. Hugs to all of you your angels
 

Cint

Veteran
Supporter
Messages
5,509
Reaction score
0
Points
191
Thankfully you were at home when it happened this time and your husband was there, also. Not that I'm happy it happened again, just that you had loved ones around when it did. Before I had my seizures under control, I was married to a pilot, so he was gone much of the time and I also had two children at home who witnessed many CP and TC (grand mal) seizures, so I do know what it is like to home alone 85% of the time. It can be very scary for the whole family. I think your doctor needs to get you in the hospital for more testing ASAP so you will know what in the world is going on with your body/brain. And for now don't let them leave you by yourself. You could fall and be severely injured. With my 1st TC seizure, I was.
 

Bergoomay

New
Messages
57
Reaction score
0
Points
0
Mouse123, I am sorry you are having such a rough time. I want to welcome you to this AWESOME community that can provide you some ideas, comfort and education around E. I am new to this group as well and they have taught me so much over the past 60 days. Your episodes sound so much like mine except for the twitching. I can be sitting there and feel some funny twitching in my head then I feel like I start to stare off in space. Within a couple minutes it becomes too difficult keep my eyes from rolling into the back of my head. I can hear everything going on around me and can even report what the people are saying. Most times, I can pick up on a conversation where we left off. I do have one question for you; can you hear and recall what people are saying during these episodes?

Welcome and I hope life starts to treat you better in the near future.
Connie
 

mouse123

New
Messages
7
Reaction score
0
Points
0
Hi Clint, I called the doctors office but I only told the front office staff and they aren't the sharpest tools in the shed so maybe I will call back and leave a message on the nurses line. Then if I keep my fingers crossed and say a prayer the doctor may get the message. Was it hard for you being alone all the time? It is for me I hate it sometimes and now that this is happening I really don't like it. I use to not mind my own company, spending time alone never bothered me you see I am the youngest of 11 children and finding any time to yourself when I was growing up was impossible. One other thing I noticed that you are in Littleton Co. My dad was born there and my great-grand father and his brother started the Rocky Mountain News actually my great grandfather built the building and his brother ran the business in the beginning with William Byers My family name is Dailey. Are you aware of a place their in Littleton called the Haven? Well in the late 1800 early 1900 my family owned that and my father was born there. It was my families summer home. There is a park in Denver named after my family and the first school on Cherry Creek was started my my great grand mother Nellie Dailey, I love genealogy. My children are doing a fund raiser so I can come to Colorado and do some research. I have wanted to come for so long but my husband lost his job for 2 year ago because he was spending so much time taking care of me and we had my sons tuition to pay. He just started working again a few months ago. My children understand that my time is limited and really want me to do a few of the things on my bucket list. They kept asking why I won't go do these things and I try to make them understand that their future is far more important to me. So they came up with this idea. My son's fiancé has been on several missions trips and done fund raisers for that so they are quite good at it and they say it makes them feel useful and helpful so they are determined to get me there before it gets to a point where I can no longer travel. Isn't that sweet. If it does happen then I can't wait to get my hands on those archives and on the papers in the western history department of the library woohooo!!!! You lucky to live in such a beautiful place. Just called the doctors office back and left a message on the nurses line so we will see what happens. Hope I can keep upright for the rest of the day! :0
Thanks for listening and for the information.
Mouse
 

mouse123

New
Messages
7
Reaction score
0
Points
0
No I have no memory of what is going on, I don't even realize that anything has happened no warning nothing. If I were to be left in that spot and then become aware again I would never know something happened. Well, I was very confused, but I was in a totally different place than I was when it started and I didn't know where my 15 year old daughter was and she drove me to the pizza place and I knew she only had a permit. I was very worried about her when they were taking me out of the ambulance. I want the man to shut up with the questions and tell me where my daughter was. I know that sounds mean but remember I had know idea what was going on or where I was or that anything had happened. The last thing that I remember was asking for a pizza. I couldn't hear the people talking to me at the pizza place at the time that they said that I was unresponsive so had I come around in the pizza place I very may have kept right on ordering, I don't know. The one last night, I was in the middle of walking, you know my body was propelling in a forward motion so I don't know if that is why I nearly bashed my face in. If I had just been standing there would I have fallen? I don't know? This is all so very confusing. But I do know that I lose time, that I don't remember what has happened during these episodes and that I don't talk at least I didn't during the big one that happen the other night according to what everyone including the EMS workers said. I agree with you about this group they are wonderful everyone has been responding and been so helpful and really right here with me. It is a God send for me. Thank you all again its making me not so afraid.
Mouse
 

Cint

Veteran
Supporter
Messages
5,509
Reaction score
0
Points
191
Hi Clint, I called the doctors office but I only told the front office staff and they aren't the sharpest tools in the shed so maybe I will call back and leave a message on the nurses line. Then if I keep my fingers crossed and say a prayer the doctor may get the message. Was it hard for you being alone all the time? It is for me I hate it sometimes and now that this is happening I really don't like it. I use to not mind my own company, spending time alone never bothered me you see I am the youngest of 11 children and finding any time to yourself when I was growing up was impossible. One other thing I noticed that you are in Littleton Co. My dad was born there and my great-grand father and his brother started the Rocky Mountain News actually my great grandfather built the building and his brother ran the business in the beginning with William Byers My family name is Dailey. Are you aware of a place their in Littleton called the Haven? Well in the late 1800 early 1900 my family owned that and my father was born there. It was my families summer home. There is a park in Denver named after my family and the first school on Cherry Creek was started my my great grand mother Nellie Dailey, I love genealogy. My children are doing a fund raiser so I can come to Colorado and do some research. I have wanted to come for so long but my husband lost his job for 2 year ago because he was spending so much time taking care of me and we had my sons tuition to pay. He just started working again a few months ago. My children understand that my time is limited and really want me to do a few of the things on my bucket list. They kept asking why I won't go do these things and I try to make them understand that their future is far more important to me. So they came up with this idea. My son's fiancé has been on several missions trips and done fund raisers for that so they are quite good at it and they say it makes them feel useful and helpful so they are determined to get me there before it gets to a point where I can no longer travel. Isn't that sweet. If it does happen then I can't wait to get my hands on those archives and on the papers in the western history department of the library woohooo!!!! You lucky to live in such a beautiful place. Just called the doctors office back and left a message on the nurses line so we will see what happens. Hope I can keep upright for the rest of the day! :0
Thanks for listening and for the information.
Mouse
Yes, it was hard being alone most of the time, especially when the kids were young, I couldn't drive, no family around, and my husband traveled-- a lot of it was overseas. I had a small circle of friends who would help when they could and we lived in a wonderful neighborhood, so the neighbors helped. And they witnessed some bad seizures, too. At the time I was living in a suburb of Memphis, TN, so not a happy camper. And yes, I am lucky to be back to such a beautiful place. I'll never make the mistake of leaving the Rocky Mountains again.

Your family history sounds very interesting. I'm not familiar with The Haven in Littleton, but I do know of the Dailey Park in Denver. My daughter lives not far from there. And of course, I knew of the Rocky Mountain News. Unfortunately, it went out of business several years ago. Now we just have The Denver Post. I hope you and your family will be able to find a way to make it back here some day soon. Look me up when you do.

Let us know what the dr. has to say.
 

Endless

Even Keel
Messages
4,466
Reaction score
0
Points
0
Mouse,

I'm alone most of the time, too. I've come to prefer it. I like the quiet, the lack of sensory input, not being embarrassed or have to explain when I have a seizure. It's just easier for me. I really need the quiet. Too much noise, activity, and some kinds of visual input around me exhausts me, and is sometimes a seizure trigger.

I suspect I'm still having complex partials, but because I'm by myself I really don't know. I mean, it's normal to end up in the kitchen and not know how you got there. It happens to my friends all the time, and it's not a seizure for them. Just old age. lol.... So if I'm suddenly in another room I don't know if it was a seizure or not.

Your seizure definitely sounds like a complex partial. You are lucky you had it around other people, so you know about it and get the right treatment. It was a really long one. How many minutes? Mine are usually under 5 minutes or so.

My doc's office was not terribly responsive, either. I mentioned it to the doctor. After that things changed and now I get calls back pretty quick.
 

ColmanMac

New
Messages
388
Reaction score
0
Points
0
Hi Mouse. I just wanted to assure you that I haven't forgotten about you. Unfortunately, work-wise, it's been one of those days & the snow hasn't helped up here in the frozen North! This is the first time I've ever had to dig out the wheelie-bin to be collected by the refuse men!

Also, my work has a habit of taking a carefully sheduled diary & simply chucking it out of the window whilst I've been trying to describe, over the phone to one of the secretaries, what I needed.
(Can you type & take dictation? If so d'ya wanna job with me?!).

Col.
 

Cint

Veteran
Supporter
Messages
5,509
Reaction score
0
Points
191
I mean, it's normal to end up in the kitchen and not know how you got there. It happens to my friends all the time, and it's not a seizure for them. Just old age. lol.... So if I'm suddenly in another room I don't know if it was a seizure or not.
Really? You call that normal? Have your friends had their head's examined? There are different types of memory and TLE does effect one's memory. You may want to consider reading this:
http://www.epilepsy.com/epilepsy/thinking_memory_epilepsy
 

Endless

Even Keel
Messages
4,466
Reaction score
0
Points
0
Really? You call that normal? Have your friends had their head's examined?

Well, you have a point, there! Yes, my friends heads DO need to be examined! One of them could use a year or two of analysis. He's a 52-year-old man and he just bought a screaming red corvette with glove-leather seats, and some serious modifications (like racing suspension, duel exhaust, turbo-charge, etc). His wife is fit to be tied. I think if a cop even sees that car going down the street it'll make him want to write a ticket.

My epi says my memory can't possibly be effected because my seizures aren't big enough, and I haven't had them long enough. I say "bull" to that.

I know my medications had a huge impact, too. Especially trileptal, which made me into the biggest goofball alive. I made huge mistakes on a regular basis, some of which scared me (like mixing up my medications and accidentally taking three lamictal pills instead of one. (triple my dosage) I was afraid that my bad memory & judgement would make me do something that was even worse, so I went off the trileptal faster than my doc told me to. Which was kind of a mistake, but that's another topic.
 
Top