teaching-nurses docs how to react to sz's

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

B

Belinda5000

Account Closed
Inactive
Messages
2,241
Reaction score
0
Points
0
I've been told I have a great idea, i don't have college degree just a life degree is all and I see my neuro on the 12th of this month and he has a lot of pull in one hospital I want to talk at.I'm a patient I'm having so many different type of sz's now it's not funny. Both nurses and doc's I've talked to think it is a great idea.It's talking to them.The EFA I don't know about I think it would should better coming from someone who has epilepsy.They see the nurses and doc's freak out.The first thing they looked for at one hospital was ID and they went through my wallet.

I had one sz at another hospital were a nurse held me down than denied it.
I don't care get hurt by someone who doesn't know what there doing.:twocents:
 
I agree -- it's a GREAT idea Belinda! You have so much direct experience and insight to offer. You would be helping yourself and others. I hope you and your neuro can make it happen.
 
Nakamova said:
I agree -- it's a GREAT idea Belinda! You have so much direct experience and insight to offer. You would be helping yourself and others. I hope you and your neuro can make it happen.
Click to expand...
Nak,

I see my neuro the 12th and at one hospital it would really help if I had his backing;I don't don't expect him to talk not at all I know how busy he is.I don't really want EFA involved in it either.I want it more personal. So could anyone tell me things that have happened to them because of nurses or docs that weren't sure what to do?
I'd appreciate it.
 
I think that's a great idea!

I would see my neuro's physicians assistant instead of my actual neuro every few visits and I don't know if she'd ever seen a seizure happen and didn't seem to know much about epilepsy in general.

When I'd tell her about things that happened during a seizure or were happening in general - the number of seizures I was having or if I was having problems that I thought could have been due to my meds she just didn't seem to believe me or even know what I was talking about. Her answer to everything was that I wasn't taking my meds, or not taking them on time, and if I did then these this would all stop.

Needless to say I don't see her anymore, only my neuro, and he really seems to know what I'm talking about and can even give an answer to a question before I ask it.
 
There is one thing that almost everyone says to me and it is "Did you take your meds"

When I told one doc I was refractory he said refractory what?I had to spell it out for him and say epilepsy now he as a homer Simpson duh .
 
One thing the nurses & doctors need to realize is there's "more than one kind of seizure". IE: The last time I was in the EMU before my surgery I experienced those duh moments from nurses. I was having a CPS, a family member who was with me pushed the alert button for me because I wasn't able to. The nurse(s) came in to check me. Since I wasn't having a tonic clonic they were puzzled. They asked me the standard questions, after a few minutes I came around.
 
I agreed with Bigman. That is one of the biggest misconceptions about epilepsy, that all seizures look like the Hollywood depiction of flopping around on the floor and frothing at the mouth.

Another thing I don't think non-E peeps realize is that the person having the seizure may be perfectly capable of hearing you even if they are not able to respond at the moment. That means that saying things like, "You are going to be fine, we will take good care of you" is not a waste of time. Also hospital personnel should refrain from saying stupid things like, "OMG, WTF is happening?" The patient can often hear you and that does not instill confidence or calm.
 
When I see my neuro tomorrow I will talk with him and ask what he thinks.
I will explain I don't expect him to be there with me to explain thereare many types of seizure. Just with me Focal, CP,SP and generalized.,Tonic clonic not everyone will have a tonic clonic seizure when they have a seizure.We have to watch out when we complain I lost the PCP I had once because I complained on how I was treated.
 
I believe there is around 40 different types of seizures.
http://www.epilepsy.com/connect/for...inks/over-40-different-types-seizures-revised

The doctors & nurses don't need to know the specifics of everyone of them by heart. They just need to be aware of differences. The CDC & Mayo Clinic has even broken them down into groups for everyone to understand them better.

http://www.cdc.gov/epilepsy/basics/types-of-seizures.htm
http://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/dxc-20117207

If all a nurse or doctor has been trained to handle is tonic clonic seizures, how will they know how to handle CPS? This is why I was happy that during my last EMU testing they captured me having a CPS. I would hope that the staff there would use that video to teach the doctors & nurses what a CPS could look like, and how to respond.
 
I talked with my neuro about what I had planned and he thinks it is a great idea ; and he says he'd even write me a letter and all I need to do is call administration now.

My neuro is moving to were I can't get to him all; my dh said he would take off from work to take to the doctor.
 
AlohaBird said:
I agreed with Bigman. That is one of the biggest misconceptions about epilepsy, that all seizures look like the Hollywood depiction of flopping around on the floor and frothing at the mouth.

Another thing I don't think non-E peeps realize is that the person having the seizure may be perfectly capable of hearing you even if they are not able to respond at the moment. That means that saying things like, "You are going to be fine, we will take good care of you" is not a waste of time. Also hospital personnel should refrain from saying stupid things like, "OMG, WTF is happening?" The patient can often hear you and that does not instill confidence or calm.
Click to expand...
I once told my sister I heard what was going on after a seizure; and she said "I'm glad I didn't cuss you out than"
 
Belinda, I think it's terrific that you'll be doing this. :)
 
You could really do a lot to give people a practical education.
 
Tomorrow I am going to one of the hospitals and I am talking to someone who was there when my purse was went through.I am going to try to make an appointment to see the person in charge or who ever I need to talk to..
I will go about 8:30.


Belinda
 
Let us know how it goes Belinda.
 
You must log in or register to reply here.
Back
Top Bottom