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Thread: Seizures while in a chair

  1. #1
    Senior Member IsMaisin's Avatar
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    Seizures while in a chair

    I have epilepsy. I usually run one or two tonic-clonic (thats flop around on the floor type for the terminology challenged) a week and I am very concerned about restraining myself in the chair and not falling out when I seize.

    Does anyone have some experience or advice to pass on?

  2. #2
    Senior Member elarson's Avatar
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    Do you have aura's to know when a seizure is coming? My husband also has tonic-clonic seizures, but they have been helped by AED's, so are very rare now, and mostly just partial seizures. If you do have aura's to warn you, you could consider a chest harness (http://www.bodypoint.com), but you may be more safe getting your self out of the chair to a safe place like a carpeted floor with no dangerous things nearby. He tipped out of his chair a few times sideways, and that was more dangerous than when he slid himself out onto the floor and rode it out. I feel for you, seizures are tough. I'd be interested to hear if you come up with any solutions that work and are safe.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  3. #3
    Senior Member IsMaisin's Avatar
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    I do have auras that can be anywhere from 10-60 seconds. At home, my dog picks up on my Auras about 2-3 minutes out, but she is too excitable to take out with me. We had her tested and she failed the entry exam for the service dog program.

    I can also, if I have enough time to reach in my pocket, reduce the severity of the seizure by popping some quick-disolving clonazipam. It doesn't have time to stop it, but It does significantly reduce the duration and severity (I have actually broken a bone in my foot thrashing)

    Also, by the time an aura starts, I am usually somewhat confused and non-verbal. I wear a red wrist emergency tag, but no one ever looks unless I hand it to them afterwards.

  4. #4
    Do you wear a seat belt or other harness when in your chair? The problem is that it is generally a bad idea to try to restrain someone who is seizing, as the seizures can be strong enough to break bones if limbs, etc. are restrained.

    Are you in contact with anyone at the Epilepsy Foundation? They may be able to provide some suggestions, or put you in touch with a discussion forum for those with seizures who may have come up with solutions for this. They do have some forums on their website.

    (KLD)

  5. #5
    Senior Member elarson's Avatar
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    We also find www.epilepsy.com to be a good resource and they also have forums.

    It's a tough one with seizures in a wheelchair, and we have found no good answers. It sounds like you thrash too much for a restraining harness to be of any benefit, and it would probably cause you more serious injury. If you have only 10-60 seconds notice, I would use that time to take the clonazipam and if possible, get in the recovery position on the ground.

    Our 2 Jack Russell's are great once a seizure has started in alerting me, but it's really hard to train for, and only I know what is happening by their sounds (nobody else does). Even though they are not proper seizure alert dogs (no training), my husband does find that their licking his face and being nearby helps him.

    I am assuming you are on AED's and have tried various AED's over time. If for any reason you have not, I would recommend that route rather than trying to be safe in the chair when they happen.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  6. #6
    Senior Member ~Lin's Avatar
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    Its not possible to train seizure alert since we don't know what a dog is reacting to, its just something that some dogs have the ability to do. In the general population of dogs approx 25% have the ability to seizure alert, and within service dogs this raises to about 50%. So if a seizure response service dog is placed with an individual theres about a 50% chance of them developing alerts.

    Disclaimer: Additionally, since seizure alert itself is not trained, it does not count as a trained task which is one part of the necessary triangle of training for a service dog. Not everyone is as responsible as IsMaisin (and some people just don't know they're breaking the law) and some will bring an untrained dog with the ability to alert in to public as a service dog.

    Lin
    Board Member for Assistance Dog Advocacy Project
    http://www.facebook.com/pages/Assist...06209239409178
    http://animalservices2000.org/content/node/31
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  7. #7
    Senior Member IsMaisin's Avatar
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    Ok, I think I really need to rethink my options based on ya'll's advice.

    I am about to get my first chair (The VA paperwork has been going on since September). I had assumed that the more restraint the better, that I would be secure. But my 200(+ but I don't like to think about that) lbs is easily going to toss a 20lb chair around.

    At home I do try to get on the floor away from things. Sounds like thats my best option in a chair as well.

    BTW, I have broken a bone in my foot while seizing when I fell and it became trapped.

    I haven't had the best luck with drugs so far. The Doc can always medicate me to the point the seizures stop- but I just sit in a corner and drool. I have tried Dialantin, Keppra, and Lamectal, and varied all of them from micro doses to maximum recommended.

    I am in the process of changing neurologists. The doc at the VA seems to be of the opinion that throwing higher doses at me is the answer. I have been seeking recommendations and have the name of a doctor who specializes in TBI induced epilepsy (mine started after a bomb blast)

    Thank you all. Not only have you given me good advice. you have given me advice that will save me money. I had thought that I needed a positioning cushion and a really good belt like the bodypoint hip grip, but now I think I I am better off with a chair I can dismount in a hurry.

    I do think the one option that I may spring for is a surelock hub locking system that I can hit on the way down- I bet if I mount it with unlocked in the vertical up, I can keep the chair from rolling away.

  8. #8
    Senior Member elarson's Avatar
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    Wheelchairs change your center of gravity in a dangerous way while seizing. My husband's seizures start in the legs as spasticity and then move up his body. So his center of gravity goes very far forward, and then very far back. I don't think you will ever find a chair with a restraint that can handle that, unless you want to be really close to the ground.

    Especially at your size, you are going to be fighting gravity every bit of the way. The lighter the better for a chair if you do tip over, because it will cause less damage. That was contrary to my earlier thinking, and I can imagine that you learned that when you fell and became trapped and broke your foot.

    Definitely look into a chair you can dismount in a hurry and safely.We have found that having good armrests really help, and having a longer frame that you can grab onto will also help sliding/falling out of it. We are looking into D's locks and Surelock's and hope they will help also. I'll let you know when we get them.

    We are only 3 years into seizures and AED's (anti-epleptic drugs), but I can tell you that it is completely trial and error in trying to get it right. Don't let them over medicate you just to solve the problem. It's really hard, because of the tapering off and onto new drugs, but do work to find the best solution for you that does not leave you a zombie.

    Also, don't be afraid to mix drugs. My husband has post-stroke epilepsy, which is very similar to TBI, and is having success with Keppra as the core drug with Lyrica as needed as an adjunct (add-on). The Lyrica also helps with neuropathic pain.

    My biggest advice to you is to record everything about your seizures, before during and after, and include videos if you can. It is good you found a neurologist specialised in post-traumatic epilepsy (PTE) caused by traumatic brain injury, because it is different than other causes. If they don't listen to you and don't really look into patterns and work with you on AED's, it's time to find another one.

    I know that epilepsy may be a bit off topic on this forum, but I would be happy to talk with you via PM. I just told my husband about this thread, and he wants me to "say hi to that guy". You are not alone in this, and there are others that find ways to work with it. Best of luck to you.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  9. #9
    Senior Member elarson's Avatar
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    I just saw you post about getting a new chair http://sci.rutgers.edu/forum/showthr...32#post1606232

    Did you get it yet? We are still struggling with bureaucracy in getting a new chair, but your's looks a lot like what we plan to get http://sci.rutgers.edu/forum/showthr...95#post1622995.

    Hope it is all working out well for you.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  10. #10
    Geez, I've had a couple grand mal seizures but never in my chair. I keep a life alert button around my neck when I'm alone in my chair. I've gotten stuck a few times hanging over the side of the chair or falling forward where I just know better than to go without one. I need to be able to move around the bunch in my chair because that's how I do my weight shifts and even if I was in a power chair all the time I don't think I could handle having my chest strapped down.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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