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Seizures and Restraints

Can someone help me out here? This past weekend, I wound up at the hands of the EMTs of my area. My ride to the ER was a literal nightmare.My question is: Is it just this area of NJ or is it nationwide that EMTs believe that it's acceptable to use restraints on the patient of a seizure call? ALMOST EVERY SINGLE TIME they respond they seem to think that it's not only okay, but required, even when told not to by family or friends. At least in this instance, they didn't use the police officers' handcuffs! Usually were it not for the restraints, the aches and pains would be ending by now. My back feels like it was used for a trampoline, my shoulders feel as if they were dislocated and replaced and I have bruises that cannot be explained by any stretch of the imagination as resulting from a seizure.Any suggestions on enlightening them?

Comments

RE: Seizures and Restraints

I don't have any suggestions on elightening people, I wish that I did! I live in CA, and I had a few seizures in the hospital after having a baby. The nurse tried to put something in my mouth to hold my tongue down during my seizure, and afterwards, they tied me to the bed! I know that they aren't supposed to do stuff like that, so I would think that healthcare professionals know it too!I'm pregnant again, and am afraid of repeating what happened with my daughter. I plan on talking to everyone I can to make sure that if (God forbid) I do have seizures, I'm cared for properly.Do you have a local Epilepsy Foundation? If so, maybe you should contact them to ask if they have suggestions. They're pretty big on support and education... Best of luck to you!Heather

RE: Seizures and Restraints

Heather,First and foremost, Congratulations!Thanks for the reply. I guess what I'm up to here is trying to get a sampling of experiences from around the country. A sort of unofficial poll. There is an office of the Epilepsy foundation in the area, but I hope to have a few numbers to back myself up with. It's high time that the restraints were stopped. I must have looked like a crazed addict in withdrawl when they took me out of here. I'm further angered by the fact that my mother informs me that she told the "EMT's" not to restrain me when they were discussing it. How these people became certified as Emergency Medical Technicians worries me. I'm beginning to wonder if all they need to know is CPR.I have a feeling that I'll be needing to educate with a loud voice. I'm usually a very easy going guy, but, I'm angry and ready to take a stand on this one.I wish you luck in educating those you need to educate. There's no excuse for tying down a seizure patient. That belongs back in the 16th century. I can almost ALMOST forgive an attempt fo put something in someone's mouth, because so many people still are misinformed. If I had a dollar for everyone I've told not to do this....sheesh!!! But there's no excuse when done by a healthcare professional. Good luck with the new baby!wewillow@aol.com

RE: Seizures and Restraints

It does seem as though a lot of people who should know better have misconceptions about how to handle seizures. I agree that the Epilepsy Foundation is probably a good place to start. They may be able to do an educational program for some of these folks.I suppose it may be standard practice for the EMTs to secure everybody who is being put in the ambulance, so they don't fall off the stretcher when it goes around a corner. You can hardly blame them for that. But it sounds as if they need better procedures for how and when to do it.You might also ask your neurologist about how your seizures should be handled. Many times the EMTs may not be needed. Perhaps your mother can use something like Diastat to stop long seizures or clusters. (Info on Diastat will be available on epilepsy.com any day now.) Make sure everyone you know has read the "First Aid" section of epilepsy.com, complete with animations!

RE: Seizures and Restraints

I had never thought about being hauled off in an ambulance, so the thought shocked and disturbed me. But then I thought about a severe seizure, in the back of an ambulance and thought "well maybe there is a reason for the restraints." I can only think with all the equipment and the close quarters what a disaster it would be if one happened. But I am not advocating something if it is not necessary. One of us must know an EMT that can shed a little light on the subject. I am sorry for the wide awake nightmare and hope it doesn't happen again.

RE: Seizures and Restraints

Mersix, I have to disagree. I thank you for your opinion, but I also thought about that. The overriding concern, must be for the welfare of the patient. As much as you might hear that dislocations don't happen, I'm living proof that they do. If you're tied down. My right shoulder was dislocated when I was a teenager due to just this thing. I had surgery to repair it. All was fine until it happened again. I'm scared to think of the damage that has been done to my back from me struggling, let alone from seizeing. I would like to see these people trained. But more than that, a little common sense goes a long way. There is never a reason to restrain a seizure patient. Belt me in, fine. Everyone gets belted in. Unless I've been arrested, keep the restraints away from me. If I remember MY training, we use restraints on people who are being arrested or detained....

RE: Seizures and Restraints

I tend to agree with you, but some one has to play devils advocate sometimes. Medical professionals rarely if ever listen to a patient, I have delt with that frustation many times too. I am still interested in the consequences of and grand mal seizure in an ambulance en route to the hospital if the only restaint is the belt. Now I am simply curious, not advocating restraint. ;-) Mersix

RE: Seizures and Restraints

I appreciate your input and look forward to the info on diastat. However, I may not have been clear on something.My mom has been told to keep clear. She is much smaller than me and in the process of trying to help, she could be hurt. I couldn't forgive myself if that were to happen. She is to let the seizure run it's course. (I jokingly tell her to ignore me and I'll stop.) We've been dealing with this for over 30 years. She saw blood and couldn't tell where the blood was coming from. She called 9-1-1. Would she do it again? I hope so. I was bleeding from the mouth from what she could see (I split my lip in the fall). Another point that I need to mention is that my mom told these people that they were not supposed to restrain me when they started to do it. So if I'm trying to prevent it from happening and she's telling them that it's a no-no, they should have figured it out.You see, due to the history of being restrained, if I hear a siren or see a uniform, I become "agitated" in my postictal state. Until this incident, when she saw it firsthand, my mom thought I was exagerating. I'm fine until that sound. Then, it's time for me to get going. I've got to hide, go for a walk, run. I don't want to push her out of my way because I hear a squad car, fire truck or maybe an ambulance on another call. Another point raised is the length. This was a relatively short seizure. I was already talking when the ambulance arrived. I believe that they restrained me because I didn't want to go to the hospital! I'm 44 years old! I think I've been through this enough times in the past 30 plus years to make that call. In this state, they can't force me if I refuse. I don't want anyone to think that I'm saying that there's never a reason for a seizure patient to go to the ER. I'm sure that most of us have been injured. But, this is a fact of life for us. when our heads clear, we know if it's necessary. Too frequently, our judgement is ignored. In this area of the country at least.

RE: Seizures and Restraints

I want to thank those of you who gave me your input.I think I got my explanation the other day. What was so important that those folks take me to the hospital that they had to put me in restraints?I received a bill in the mail. Under description was the word "ambulance"Amount.....$1,696.00. Bubba

RE: Seizures and Restraints

i was taken to the ER in an ambulance the first (and hopefully only) time about a year ago. i came to right as the paramedics walked in and was told i had to go with them. i felt fine but my b/f at that time and paramedics insisted i go. granted, it was one of my first seizures, but i'd had myoclonus for 4 years already - so i was very familiar w/ my senses. i was stuck with a $1200 bill..but my insurance covered half. thank goodness. i was restrained too...only i was finished seizing. sorry to hear about your experiences. i'm sure that is very uncomfortable and unnerving.i understand *i* was taken b/c my bf had no idea what to do...and was scared out of his mind. but i certainly know to tell everyone now..*when* to call for an ambulance.:)

RE: Seizures and Restraints

It's actually pretty much a nationwide thing. Most EMTs as well as hospitals, including the very doctors that are seen, seem to think it nessecary to use restraints and such for epilepsy patients. My mother has had epilepsy all my life, and two of my brothers. Everytime they've had one the EMTs didn't handle it right. It actually got to the point where my father, my brother and I would just take care of her, because no one else could. Doctors really don't know what they're doing, because it's not in their lives, just their text books.

RE: Seizures and Restraints

Where in NJ are you? We also live in NJ. Did you bring this to anyone's attention? I would be screeming so loud everyone would hear me. the senetor, congressmen I mean everyone including the media. My daughter has seizures and she has only been with the emt's once and that was on the first one. My husband went with her and I'm not aware of anything like this. I was told by the doctors by the time you get to the hospital there usually over, so I always call the doctor no matter what time it is.

RE: Seizures and Restraints

Busymom,Sorry, I didn't mean to ignore you. I just didn't expect any more responses to this so I stopped checking. I addressed it to the company first I wanted to give them a chance to handle it internally. It seems that they did. I've spoken with this EMT since and have been told that it'll never happen again. BTW Central NJ.

RE: Seizures and Restraints

As an EMT, I am going to jump on this one.The restraints are used for both ours and your safety. It is NOT meant to be a viscious act on our part.We restrain patients who are combative, so they don't hurt us inavertantly from their seizure, and to keep you from moving around, so we can get the IV line in and get medication started to get things calmer, and to protect you from getting hurt during yoru seizure. Don't look at it in a negative way.If patients start resisting restraints, and start taking swings at us, then the law will step in, and subdue the situation. Most people let themselves be restrainded, because they are too tired to fight it, and they know it is for their good.I have lived in 4 states, and the protocol for using restraints has not changed.Yes, a seizure can too cause muscle spasms and bruises. I can tell you this for a fact from studying the section in my Advanced Medical Life Support textbook when I was in college, and from getting banged around from my own seizures. I have bruised the entire surface of my hands, so it is one big bruise, bumped my head and had a goose egg, and pulled muscles in my legs, neck, and shoulders.It can be painful after one for a few days.Nancy--NREMT-B

RE: RE: Seizures and Restraints

Nancy-I understand what you are trying to say -- but I have SPS and CPS and I don't fight unless I think I am being hurt which usually is the case. I have been pinched and pounded in the chest to get me to become "aware" or wake up and all it does it cause me to fight more-- I am scared and I panic but I am not out to hurt anyone. Restraints do not have to be used if the EMT would just stay calm and talk in a reasurring voice to most of us and we would be okay. I understand that some of us have severe grand mals and jerk alot but restraints could be used with care and compassion not handcuffs and yelling and screaming and shouting orders as if we were criminals -- I have to disagree with you on that -- if a person is not aggressive and can be handled with care then restraints are not necessary-- I do agree you need to defend yourself and take care of yourself but you could also back away and let the person calm down-- the seizure usually doesn't last that long. Karol

RE: RE: RE: Seizures and Restraints

Back in the 70's (when we were still working on a diagnosis and getting my seizures under control) I occasionally had seizures at work.  I shared an office  with others but they were out in the field more then me so I was most often alone.  I usually came out of a seizure and found myself on the floor or something.  Nobody was called and probably nobody but me ever knew.....When siezures became more frequent and more intense others did begin to notice.  After the second ambulance call the local EMTs knew who I was and what the problem was.  They treated me appropriately.  I then informed all of my co-workers of my problem, what we were doing to get it under control and what they should do if I had another seizure.  I also asked them to call my husband before they called an ambulance.  Provided with some information they were less alarmed and waited a few minutes before making any 911 calls.  By that time everything was usually over and there was no need for an ambulance.  However one day one of the office girls upstairs saw me sitting on the front steps of the building (waiting for my husband to pick me up) and witnessed me go in to a seizure.  She called 911 without asking anyone.  The ambulance arrived at the same time as my husband.  They asked him if he thought I needed to be taken in.  He said no since he could see that the seizure was passing by then.  He had to sign a paper for them refusing the ambulance (a liabilty release).  There was no charge because we did not call for the service.Don't get pissed at the folks who are trying to help you! They are doing the best they know how with the information that they have....and they may not have all the information they need for treating seizures..........We can all can become advocates for each other by using our heads and providing these people (EMT, Fire and LEO) with the information that they need to recongnise and properly deal with people who have had or who are having an epileptic seizure. Go to the local Emergency Service centers and introduce yourself so they know who you are.  Ask to speak at one of their monthly safety meetings and then get information prepared for handout to their staff (Local Epilepsy Center should have plenty).  Give them accurate facts and information.  Let them ask questions and provide ideas for solutions to problems experienced by us when we are treated by them.  Don't forget family and friends either.  They are the ones who feel the most helpless and scared because of their closeness to us.  Teach them and give them instructions.  You can even have the information typed up for them to follow - or for them to provide to emergency personel if they are called.  Carry a copy of those instructions with you too in an easy to find place - like by your ID.It's easier to head it off at the start then to try to control an out of control moment - so get people educated and then thank them for being there to help you and for being willing to hear you and learn more.Later........................Lee   

RE: RE: RE: RE: Seizures and Restraints

 LeeI agree with you and I do carry a card of intructions and I do keep a card on the wall in my home next to my bedroom. I have tried to educate the EMS and the Police but they don't seem to be interested. All I have every gotten was a smile and a pat on the head.  My biggest beef is with the Mental Health community who are so quick to think a seizure is a mental illness and try to load you up with medication and "help". I have talked with my local Epilepsy foundation and they have the same problem in trying to educate people. I am all for education as Education is my lifes work. I just wish that there was more awareness. Thanks for the tips for everyone. I am glad you have been able to do something in your area to educate the people. I travel alot so I am not so easily known. Later . .. . Karol

RE: RE: RE: RE: RE: Seizures and Restraints

My cousin had a grand mal seizure with just his 10 yr old daughter in the house and she called 911 and the cops came and put handcuffs on him and when he came out of the seizure he realized he had the cuffs on and didn't know where he was, became angry and reacted, and this all happened in front of his daughter.  This is a very, very low key guy normally.  His daughter was never the same after that.  All because of the cuffs....they never needed to do that!

RE: RE: RE: RE: RE: RE: Seizures and Restraints

This is the kind of thing that makes it so hard for people - especially the children. There is no need to do things like that. I have found that the people who are suppose to be helpful are the ones who out of ignorance (not knowing) do more harm than good. My children are victums of this sort of "abuse". They are grown and have families of their own and they still are having trouble coming to grips with episodes like this. It makes them not trust those they should have their utmost trust in. I do not trust the police nor the EMS people and God forbid the people in the ER's. And I used to work for the FBI. The neurologist I had in Texas told me to stay away from the ER because he told me they would kill me there. That is sad! Really sad! So I try to stay away from them all.

RE: Seizures and Restraints

Your story sounds EXACTLY like mine. It is nationwide-- I have lived in many states and places and I will tell you I have not met anyone yet in the EMS or the FIRST ALERT service like the police that have any idea what is happening to me!! It is a nightmare. They have to learn that restraining only brings on trouble with a person having a seizure. IT is the last thing they need to do!!  Restraining only causes damage to the victum-- Us-- I have had bruises and almost had my colarbone broken. The last time I had EMS come I hurt so bad in my back for about a week I needed a chiropractor-- I have even had them dislocate my hip.  EDUCATION is the only cure for this BUT I do not know how to educate them unless you go yourself with information -- but will they be interested enough to listen? or even pay attention?  I really dont' think they care -- or even want to be bothered>  BUt they sure like the $1500 they get for the horror trip to the ER which also can be another nightmare in itself.  Sorry I sound so negative-- I am just tired of the abuse -- may be if we started to sue them for malpractice-- I do not know -- it is really sad to me Karol from Minnesota

Re: Seizures and Restraints

My name is Jennifer and I just found this site. My boyfriend of 5yrs has had epilepsy since he was 12(he's 39 now), and a couple of weeks ago I witnessed one of his seizures for the first time. I will admit it was scary because i never saw one before. Anyway I called 911 and when the cops got there he was sitting on the couch still in a dazed state but calm. See after he has his grandmal he goes into a post-ictal state. The cops asked him if he was ok and he didn't respond,(naturally). Next thing I knew he was face first in the couch being handcuffed and had a cops knee in his back. I told them not to do this and they didn't listen.When the paramedics got there they even asked as to why he was in handcuffs. His air was cut off and he started to panic. When he finally came to he was in the ambulance and complained of a hurt shoulder. He has torn ligaments. I find this to be very unnerving. You are calling 911 for help and they end up hurting the person more. We have talked to the Police Chief and pretty much the blame is being put on my boyfriend. FOR WHAT? HAVING A SEIZURE!!! This is just crazy. I agree that the first responders need to have more training on this subject. My boyfriend is just a wreck after this ordeal. He can't sleep because he just relives the whole incident. JenniferNJ

Re: Seizures and Restraints

its funny coz my uncle and i have seizures and when he has one we are told to keep clear but to make sure he cant hurt him sellf first. even the ambuleance crew when they arive the give him oxygen and then take one arm to do there test but the stay as far away as possible as you have to let his body deal with the seizure and restraining him would make it worse. and thats what i tell people to do if i have one because thats what the emergency people said to do with him and i just asume its the same for me.
i think its weard that they restrain you. have you tried asking someone that was with you why they inseasted on restraining you?
hope it gets a bit better in future siturations!

Im from NJ and they

Im from NJ and they restrained me too when I had a grand mal. I HATED IT. I think it made things worse for me, I remember becoming more violent, and I discovered bruises on my arm too later on, but I dont know if it was from the EMTs or what. NJ is a stupid state. What area do you live in? I live in Middlesex County

Heres a suggestion... punch them.

Re: Im from NJ and they

I just thought I'd add a comment from a UK perspective. I can't believe that people with epilepsy are restrained in the way you are talking - are you guys in the dark ages over there. My husband has been taken (free - on the NHS) to hospital 3 times after his seizures. He does not get violent when coming out of a seizure but is active and wants to walk away/run away and would push and shove to get past. The first time it happpened we had no idea what was going on so tried to make him sit still and stay in one place. As soon as the paramedics arrived they told us to let him go where he wanted (as long as he was safe) and the literally talked him into sitting down on the bed and lying back. They then took him to hospital - belted in of course but in no way was he restrained. I can't believe it is still allowed in the US. They said it was far worse to try and restrain someone having a seizure and that all you should try and do is make sure they were not in danger. Seems more sensible to me!

Re: Re: Im from NJ and they

Wow that way sounds so much better. I hope your husband is fine now....

Re: Re: Re: Im from NJ and they

Touch wood, yes thanks. He is on the maximum does of Epilim and hasn't had a seizure for 18 months. He still has 'odd' things happen at night some time but they are not proper seizures - if I hear a repetitive scratching noise sometimes and wake him up he seems fine but sometimes will have a bad headache in the morning! How are you?

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