Hi Lynn-- welcome to our group.
Hi. I am Millie. I've had EP for over 50 years. You didn't say that you pass out.
You sound like you have what used to be called grand mal szs. I just got up
and I can't remember what they are called now. When I did a lot of the things
you mentioned-- I wood make a weird sound and then pass out-- then shake, etc.
I was over 30 and pregnant when I had my first sz.
I had those at first but now they are more like complex partials. With those I
don't pass out but my brain becomes scrambled for a day or so. Although
about a month ago I forgot to take my meds for about 2 1/2 or 3 /1/2 days.
I fell and couldn't get up[.
I live in a retirement center and I didn't go to a couple things that I always went
to so one of my friends reported it to the office. They came to check on me Wed
morning and I said I was fine. The secretary went back to the office and said
that I said I was fine but she wasn't buying it. I was to work in the dining room Thurs
so the secretary came to my door and asked if I was working in the dining room.
I said, "Yes I'll be there." The only thing was I was on the floor and probably had
been most of the night. I didn't tell her I needed help -- so she went back to the office.
When I didn't come to work in the dining room 2 ladies came to check on me. They
called 911, I was in ER and my Dr decided I should stay in the hospital for 24 hours.
It was his day off so his substitute came to see me Thursday nite and my Dr. came
Fri morning. I had not stood or walked when he saw me so he had Physical Therapy
and Occupational Therapy check me out plus a bunch of x-ryes and other tests before
I came home Fri pm.
I'm telling you this because everybody's szs are different. There are about 25 different
kinds of szs and about 25 different kinds of meds. I had been sz free for over 5 years.
But not taking my meds-- sure did a number so me. I have no idea why I didn't take them.
Nor do I know how long I was on the floor.
How many meds have you been on? I was and am taking 3 Dilantin Mon, Wed and Fri and
4 the other days plus 4 -30 gr. phenabarb a day. I am seeing my Dr. on Monday again.
We are a friendly group. I am interested in what kind of sz the others think you had.
My 2 daughters who live in town have been a big help to me.
Millie
----- Original Message -----
From: armyde31@ymail.com
To: epilepsy@yahoogroups.com
Sent: Friday, October 05, 2012 1:52 AM
Subject: [epilepsy] Hello, new group member-seizure questions
Hello my name is Lynn and I have been suffering from seizures over the past four years. My seizures have yet to be controlled and sadly I fall into the 30% patient group that medications failed to control my seizures. I have recently been dealing with a bout of reoccuring viral meningitis that has taken my seizures to a whole different level. I have had two seizures in less than a week that have been the most violent. I usually have auras or some sort of warning before the seizures come on but the past few times I have had 30 seconds, long enough to pick my cell phone or yell to my spouse who was at the other end of the house.
I am wondering if the virus can cause additional permanent damage making my seizures crank up to this new level and without much, if any warning? I was told that I need to see my Neurologist again since my seizures are far worse than what they used to be however I haven't responsed to normal seizure medications and have had zero luck when taking meds for them to work. I also suffer from Idiopathic Gastroparesis which in itself has caused vagus nerve and other nerve damage through out my body. It seems with my GP progressing and getting worse so is my seizures.
During my seizures from what I remember but more importantly what my spouse witnesse are the following:
aggressive shaking, tremors, arms-legs, head bobbing, drooling, sluring words that come out as mumbling, nausea, head pressure, fullness, tightness in throat, hands lock up, takes me a bit to be able to walk around again without assistance, frequent need to urinate-post seizure, feels like I ran a marathon and over all exhausted into the next few days. I have also noticed after the seizures its hard to make words out I want to say, I have to pause a lot when talking.
What type of seizure does this now sound like I am experiencing? I was told I have complex seizures but now my other specialists feels they have certainly changed and not for the better.
Sorry for the long winded email. I am very glad to have found this group and appreciate any words of encouragement or advice.
PS: I have zero family support. My Husband is my prime caregiver and source of support. My parents just say, "Oh they will go away, its just the virus however I have been diagnosed with seizure disorder for the past four+ years.
Lynn :)
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