HELP! my poor family....

Status
Not open for further replies.
Messages
12
Reaction score
0
Points
0
I made a post earlier where I gave all the details of my visit to the ER....
Now we're past that.
But I am still having cluster seizures.
The first one of course is the one I originally posted about: Going to school, got a headache, seized, vomited, and repeated it for almost an hour on the way to the hospital.
The hospital group sucked but whatever, I'm over it...

Now I am still having seizures. They put me on klonopin in addiion to my lamictal, but the lamictal was still at 25 grams. Obviously not enough to stop what was happening.

3 days in... I am exaushted. I have slept most of the time, but my family is being subjected to continual seizures.
My husband is scared. He can't handle me alone. We're at my parents house, and everyone has to take turns with me...
Sometimes NOTHING happens, othertimes I still seize.
They changed my meds to Keppra but the doctor warned my parents that it will be a rough 2 days while it gets in my system.
We are now just starting day 2. I'm okay right now. My head hurts again... which may or may not be a sign. In Georgia we have such bad pollen that sometimes it could be my sinuses, or even just a pressure change from the cold front moving in.

I had an attack last night. After vomiting again, I had another small seizure or 2, but went to bed and slept, around 2:30 my husband had stepped out to the car to get something and I guess I had another one. He came in to find me crawling to the door on my hands and knees. It was so hot in our room because the door had closed (we use an attic fan to draw in cool air from open windows, but with the door closed there was no breeze at all. Just hot, wet sticky air) I was trying to get out to have some air... I guess I told them that. I remember something about it....I made it out and onto a soft futon mat that we had proped up, and siezed. My family came out, My husband yelled for them....

The seizures have become slightly less frequent, they have decliened in the intensity.

but my poor family.

What do I do?

They are so busy trying to tell me I'm okay and that they are't scared....
but I can see it.
My husband cried while he held me last night.

My mother downplaying her fear, but I can see it. I have heard her admit that she is scared to others, but says she isn't to me.
She wanted to "talk" to my husband about showing his emotions because it can make things worse, but really and truly I feel worse because they are all walking around hiding their fear.

I'm scared.
I understand why they would be...
How do I fix this?
How do I get them to just talk to me and open up?
I keep telling them that I don't feel it.
They know I don't.
The one and only time I have been awake and been able to feel the tremors it felt like I grabbed the electric fence (something I did only a couple times as a kid) just like a volt shot through me and then it was over.

How Do I get them to be as honest with me?
I keep asking questions.
My mom keeps telling me that no one would notice if I had a seizure in public.
Yet, I know I jerk... and I have bit my lip pretty hard..
 

Birdbomb

VNS Guru
Moderator
Messages
2,398
Reaction score
0
Points
0
Hi Meredith

One night during a meeting at my epilepsy support group, the woman sitting next to me went into a grand mal. I was the only one in the room who knew what to do. I got the men to help lie her on the floor and put her on her side in the recovery position.

The facilitator, who also had epilepsy, was a total basket case! She was shaking out of fear and crying. She grabbed a handful of napkins and dipped then into ice water and began wiping the seizing woman's face.

The seizure was not bad, less than 3 minutes and as the woman was coming around, she was very confused and scared. Had the look of a rabbit caught in the headlights of an oncoming car.

I was angery. No one came to help, I had to "create" volenteers and they all stood around just staring! Then it dawned on me. NOT ONE member had ever seen a grand mal seizure and now they were struck with the realization of what their own loved ones were living and witnessing.

Fear of epilepsy comes from ignorance. Fear come from feeling totally helpless in not being able to DO anything to help. Fear comes because your family loves you.

From my position sitting on the floor with this woman, I could see the fear in their faces too, but the worst one was the facilitator. That woman just freaked out! To make matters worse, she had no idea of what to do and panicked. At the next meeting, she asked me to speak to the group. We discussed seizure safty protocol. I downloaded a bunch of stuff about seizures and what to do from the EFA, printed then up and passed them out to everyone.

Once we got everyone talking, the floodgates opened. These members had never seen a GM and they were scared. I can't blame them, it IS frightening to see the human body make strange movements ad contortions that look horribly painful.

I don't know how long you have had E, but as times goes on and your family becomes more educated, their fears will be replaced with confidence.

Maybe you can get them to open up by visiting sites such as CWE and expressing their own fears to others in the same situation. They may not open up to you but may be more receptive to complete strangers.

It's hard watching someone you love go through seizures.

When I was first diagnosed, I printed up first aid charts and hung then in the most prominant place in my kitchen along with a description of seizure types and as to WHEN to call an ambulance. Did the same thing for my job too. I would initiate conversations about epilepsy and invite questions. But my family was like yours, very "closed" off to communication and mostly in denial. The people at work were terrific, they asked tons of questions.

What a am concerned with is the number of seizures you are having now. Is there another medical facility you can go to, besides that [scarasm]lovely, and thought provoking[/scarasm] on you visited last time?
 
Messages
12
Reaction score
0
Points
0
No... No hospital nearby.
My neurologist has been fabulous. He was mad as all hell that the hospital didn't contact him, and my family didn't either. (however, I was the one with the number and I think I gave them the wrong number... they were asking me after I was just coming to.)
He has graciously picked up the pieces left by my novice mistakes in begging not to call the ER. (of course who can blame me after the horrible experience at the last one?)
However, he has made it clear that while the Keppra builds in my system, that this will be a rough 2-3 days.
He instructed my mother and father to take me directly to Piedmont Hospital (which is an hour away...) and NOT to any other hospital.
He said that he wants to make sure that I get to a hospital where a quailfied neurologist is available.
I'm only to go ONLY if I have more than 3 seizures in 15 minutes.

The interesting thing about that is, Hospital #1 claimed that the cluster of seizures I had with the vomiting, etc.... was only 1 seizure, even though my mom felt it was 5-6 in the hour.


So we are working hard on getting the meds in.
The seizures are almost all mild now. Simple blank, or dropping... some I still jerk around... but most are quiet today.
They are far less frequent.
I'm exauhsted.
I'm taking the moments that I am awake to type on here.
I want to make sure that I have someone to touch base with.
I really appreciate this board being here. It makes it much easier to get information. Mom is calling the family to find out if anyone else has anything similar to epilepsy.....
I just wish my parents would get on here! They probably will soon. I hope.
 

brain

Account Closed
Inactive
Messages
3,452
Reaction score
0
Points
0
Meredith:



I can relate in more ways than one! I've had my
share of angry Doctors who were furious that
they weren't contacted or notified whether by
my own family members OR the Hospital when I
was in the ER!

It's downright frustrating and the helplessness
you feel just 'sets' in; to a point of total perplexity!
There had been times when it was critical when
my own 'husband' (now ex) would just ignore and
take off and vanish (where he went - who knows?)
and leaving my little son alone with me who would
not know what to do except curl up and lay down
and sleep beside me. But when he got older he
learned how to use the telephone ~ and he's
saved my life several times.

As for my parents and little sister (unfortunately
to her, I am considered as "Bad Karma" to her
because of this Epilepsy and she's been avoiding
me for years since we've been wee ones).

These are the same family that won't even LEARN
sign language or even obtain a TDD/TTY so they
could communicate with me (I'm now Deaf); and
it took me a very long time for me to talk to them
to the Relay. They never call me, I have to call them!
They won't even dial 711 to use the Relay Service,
instead, they just call, let it ring a couple of times
so it shows up on Caller ID, and hang up and put
all the work on me to call them back.

Unfortunately - there's nothing you can do about
these types of people; even with the Advocacy
and Awareness. A lot of people are still stuck in
their mind-set filled with myths and old wives fables!

Now my elderly mother, she can only take so much
but really doesn't have that genuine interest, only
when she doesn't have anything to do. She makes
it clear "It's YOUR PROBLEM, not mine!"

Some people are just ICY COLD. Whether family
members, outsiders, insiders, by-standers, all-
arounders.

And I think that's downright sad, sad, sad!

But some people are FORTUNATE AND LUCKY!
Like STACY who has a loving and caring husband
like Bernard (I think we should all fight for him?
Huh? :lol:) .... People with that type of attitude
are harder and harder to find.

It's become a very SELFISH GENERATION these
days - and YOU DO NOT NEED TO EVEN BE SICK
TO EVEN EXPERIENCE THIS! MARK MY WORDS
ON THIS!
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,550
Reaction score
14
Points
193
The seizures have become slightly less frequent, they have decliened in the intensity.
I'd take that as a good sign.

BTW, I've seen people report that being hot/overheated was a seizure trigger for them.

but my poor family.

What do I do?

They are so busy trying to tell me I'm okay and that they are't scared....
but I can see it.
My husband cried while he held me last night.
Birdbomb is correct. A lot of fear and anxiety can be mitigated with knowledge. Life is always stressful when seizures are not controlled. Hang in there.

How do I fix this?
How do I get them to just talk to me and open up?
I personally believe that your attitude about things has a strong effect on how others react to it. If you take the attitude that this is just another obstacle in life that you need to deal with and don't dwell on it, I think it goes a long ways to helping others see that they don't need to fret so much. Just deal with seizures when they happen, don't waste time and energy worrying about them when they are not happening.

My mom keeps telling me that no one would notice if I had a seizure in public.
So what if they did? It would not be the end of the world. :twocents:
 

POSITIVEPERSON

Playing With Angels
Messages
379
Reaction score
0
Points
0
Meredith VS : it sounds like your meds are slowly getting into your sysytem and your szs will disappear. As for your family I believe they will adjust as they see you getting better,which you are . Than they can relax and hopefuly start talking to you. Your life is not over because you have epilepsy. Its just a little bit more complicated but it would be that way if you had heart problems, or diabetsis or any other illness.
Thats exactly how my nuero explained it me when I was 11 yrs old . He told me epilepsy was not a excuse . Life goes on , I still had to go to school, work, pay taxes and live my life to the fullest.
Wishing you a sz free life
Riva
 
Messages
12
Reaction score
0
Points
0
Thanks to everyone. I appreciate the words of encouragement.
My parents and my husband have been wonderful.
At first my husband wasn't around. He stayed at our house for awhile.... My mom was driving me to school, and then afterschool he was supposed to pick me up. He was bringing me my books (which I left in his car) when I had the seizure. Then he got los on the way to the hospital and ended up going back at our house, 40 miles from the hospital. He did come back down though, he just waited for traffic to die down. This realllllllly upset my parents. He didn't understand that I was having intense seizures. He had only seen me having trance-like ones, and only part of the complex partial that I had at the EEG when he heard them calling for help he ran too. So when he heard that I was on the way to the ER, he almost felt like it was an over reaction.
My parents understand this now.... I think.
My husband cried last night telling me he was so sorry for not coming quickly and then spending the night seizure free, and then leaving again all day.
After seeing what my parents had to watch in his absence I think he felt overwhelmed with guilt.
Personally, I feel bad because everyone is so OVER caring in my family. It makes me feel like I am scaring them too much.
However, I'm glad its now getting better.
Brain... I am so sorry to hear that your family is so disconnected and cruel. Its awful! I believe firmly that karma is a very real thing, and to do that to another soul will certainly bite them eventually.
My grandmother was mostly deaf... I cannot possibly imagine not being there for her. Same as I know she would not possibly imagine not being here for me if she were still alive.
Sometimes the best family is one's friends.
This seems to be the most important well of information for me to draw from.
Its not like just science (even though by nature I am a scientist and I want to understand everything about what is happening in its medical form) can give you the piece of mind that another person/people in the same situation or who may have lived through the same.
I am still very new to this.
Parts of me are angry that I have it at all. I have already had so much BIG things in my health already, that at 25 I feel as though this should be enough.
a major eye defect, cancer and now epilepsy?
But its that which makes us different that makes us stronger.
 

POSITIVEPERSON

Playing With Angels
Messages
379
Reaction score
0
Points
0
Not just stronger!!

Compassionate, understanding and loving!!!!!!!!!!!

Because we understand !!!!!!!!!

Riva
 
Last edited:

Bernard

Your Host
Administrator
Benefactor
Messages
6,550
Reaction score
14
Points
193
FWIW, you come across as well grounded and strong (in spirit) Meredith. :cheers:
 

Zoe

Alternative Research Encyclopedia
Moderator
Messages
664
Reaction score
0
Points
0
Meredith,
Keep hanging on and tell your family to do the same. The MRI may help determine what is causing your symptoms.
I can empathize with what you are going through, too. I had my first stroke from a rare vascular disease that was considered the cause of my seizures. At the ripe old age of 31, my left side was paralyzed from a major stroke and I lost the memory of most of my adult life. There were years and years of brain surgeries [2] uncontrolled seizures, overcoming the paralysis, then a spinal cord injury from a car wreck(!), from which I'm still recovering.
But life really does go on, it isn't "over" just because we get hit with obstacles. Just keep climbing over them and doing what ever is in your heart to do. Maybe you can think of what you've already been through as practice for what you must confront now.
What you are dealing with is BIG and may overwhelm you at times, but you can keep moving along, taking things in stride, dealing with them as best possible and continue living a good and meaningful life. Do take time to greive, to freak out, to vent, and let yourself get back on track when you are done.
If you can do any relaxation exercises, even just practicing breathing slowly, it may help you keep your fears in check and help your poor body handle the trauma from the seizures and vomitting.
You have your husband and your family with you. Letting them know how much it means may help them overcome their fears. If you feel up to it, you may want to ask them to talk about their fears so you can all handle it together. It can be all the more frightening when you have no clear diagnosis. Keep your faith in yourself, and in your ability to learn and deal with whatever this turns out to be.
 

Zoe

Alternative Research Encyclopedia
Moderator
Messages
664
Reaction score
0
Points
0
p.s. A typo in the first sentence- my first documented stroke was at age 21.
 

Zoe

Alternative Research Encyclopedia
Moderator
Messages
664
Reaction score
0
Points
0
My Neuro used to tell me I had to learn to live with my seizures. Seemed I often had them o the city bus in Denver, later in Seattle. I just told him if I had to live with seizures so did the rest of the world. I made up a little card explaining that I had seizures and what to do if I had one on the bus. I gave them to the bus drivers and they were usually very nice and helpful if I had one of my partials and got disoriented.
 
Messages
12
Reaction score
0
Points
0
all by myself!!

I've been in such a fog. My life has felt like I have lost all independence int he past few days.
The new meds are startring to take effect and lessen the seizures, but they have made me tired and somewhat "high" if you could call it that. They also make me sick.
My coordination is off...
But I am TIRED of people doing EVERYTHING for me.
SO I decided to cook dinner. (supervised of course)
I made home made dinner rolls, soaked in butter and fresh minced garlic and baked salmon with lime and rosmary garlic.
the dinner is a hit, and I feel so good beause its me who did it, with minimal help.
Thats a HUGE accomplishment for me, right/. It feels like one.
I just needed SOMETHING that made me feel like an adult again.
I am ready for this to be over. Is not yet, but I can feel that we are at the last of the hard part.

I've dropped twice today... 2 seizures. None other than that.
Lucky me! Thats much better than than yesterday and far better than the last few days.

We're working steadily on an improvement.
I'm getting there.
 
Messages
12
Reaction score
0
Points
0
to the hospital

I woke up this morning perfectly happy and fine.
My father and my mother on the otherhand must have gotten straight up and psycho dialed the doctor.
I have to go to the ER.
The seizures are far less frequent I slept all through the night. I've gone 13 hours without even a small one.... and before that I only had small ones.
GRRRRRRRRRRRRRR.
I don't wanna go.
Tell me there is a place that my parents can go talk to other people who live with kids or family members with epilepsy so they can quit freaking out over ever little thing?
where do I find a place like that.
I'm still taking my Keppra and that has made me sleepy.... So I just sleep all day now.
And now I'm expected to go sleep at a hospital!
I'm indignant... can you tell?
Thanks for letting me vent.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,550
Reaction score
14
Points
193
This is that place. Your parents are welcome.

It wasn't clear from your post. Why are you going to the ER if you haven't had any seizures?
 

Birdbomb

VNS Guru
Moderator
Messages
2,398
Reaction score
0
Points
0
Meridith, most of the AED meds make you sleepy, groggy, mentally foggy until your system gets used to them.

Parents will ALWAYS be parents, even when they are old and gray and you are the one changing their diapers. Distance is the only thing that removes the suffication. But distance may not be the solution.

I think the family needs to be in touch with others in the same situation and see how they cope. Your family is just scared. In time they will adjust
.

 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
Hey... I am a parent and I am here. It is keeping me sane, because if the only people I had to talk to were the doctors, I would be in the nut house.
 
Messages
99
Reaction score
0
Points
0
Robin,
I'm with you. My friends are supportive of my son and our family. However, they've never seen him have a seizue. My husband is wonderful and so supportive of our son. However, when our son has a seizure my husband becomes very depressed. He'd give the world to have the role reversed and he'd take the seizures on. I am the primary caretaker when it comes to our son. I seem to become the strong one and focus one. Amazing how the roles switch. My mother in law cries everytime she hears he's had another seizure. She tells our son how it breaks her heart. Well of course it does, but i tell her to not put that guilt of her feelings on him. He has enough on his plate to deal with. Plus he has no control or idea when he's having a seizure. It amazes me to hear how everyone one way or another is experiencing the same things in their homes as we are.
Meredith...you are truly fortunate to have a family who loves and cares for you. Family members can feel so helpless because they can't "fix" the problem. I've learned that in time all good things happen. Getting the seizures under control will happen all in good time. Stay focused and patient.
Marian
 
Messages
12
Reaction score
0
Points
0
I got stuck at the hospital for 3 days. Ugh.

I got put on a longterm eeg monitering system.
I'm glad its over.
It wasn't so bad except I got realllllly bored.
Mom had called my neuro. and told him that I was still having seizures while adjusting to the meds... she exaggerated a bit (not on purpose but she sometimes thinks things are worse than they are) so I had to go get hooked up.
Things are fine once again.
*phew*
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,550
Reaction score
14
Points
193
she exaggerated a bit (not on purpose but she sometimes thinks things are worse than they are)
I think my mother is the same way, but she has turned out to be right on a few occassions where there was a serious problem. Better safe than sorry I guess.
 
Status
Not open for further replies.
Top