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Thread: Seizures while in a chair

  1. #21
    Senior Member IsMaisin's Avatar
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    Elarson, I recently got one of these for my living room chair that I spend far too much of my day in. It has proved helpful in alerting anyone in the house that I have a problem. There is a way to mount it on a wheelchair as well. While it is designed to monitor dementia patients, setting it up in a way that I can trigger it myself is easy.


    Since your husband has auras, if it is possible in the limited time he has, a fast acting benzodiazipine like clonazapam can, if not stop, at least reduce the severity of the seizure. Clonazipam is available in a quick desivoling tablet that is best chewed and held in the mouth for the few seconds it takes to absorb directly into the bloodstream. While over use may lead to dependency, there is virtually no risk of a lethal dose. The pills come in .25 mg doses and the lethal dose is over a kilogram. So no worries at all about taking too much. The pills do come in blister packs which are far too much trouble to open quickly. They degrade quickly in the presence of moisture, but are stable for several days in a dry environment. I checked with a Doctor of Pharmacy who recomended that I use the opened pills within 10 days and discard any that show degridation due to moisture.

    I keep a dose in a pill container with a small desiccant cylinder. I keep one on me at all times and have several bottles around the house in strategic locations.

    Primary drugs for seizure control vary in effectiveness with dosage and individual metabolism as well as being somewhat selective in the type of brain activity they target. While almost anyone can be drugged to the point where seizures stop, the patient can have a severe reduction in quality of life with higher doses. A bed-bound zombie is not what you want.

    A significant percentage of epileptics are not able to find a medicine that will stop seizures while still allowing a reasonable quality of life.



    I am still trying to find an effective therapy. Most of the depression compatible AEDs like lamotragine or gabapentin are not as effective as diazepam, but at least I'm not taking one drug that exacerbates another condition. I am not in a location that allows medical use of cannabis, but some people report success with low THC / high canniboid tinctures.

    Have you considered a service dog? Some dogs do develop the very rare ability to detect a seizure aura well before their person can. While this is not something you can ask for, training a dog to, when an alarm sounds, go seek out help or press a emergency call button is certainly within the abilities of most service dogs.
    Played with bombs- No SCI, Brain Damage enough that I require a chair and a caregiver.

  2. #22
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    I am pretty sure the pantoprazole is generic keppra. I know I used to take keppra. I think with insurance got changed to the generic.

    Quote Originally Posted by elarson View Post
    He is on Keppra and Lyrica. He is very good about being consistent about them.

  3. #23
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    My seizures, am pretty sure, all start in head. I get a sense of things starting to get way warmer than normal. I immediately try to stop ALL movement. This works now. But before I had no idea and I think I was a total mess. Whatever you do, make sure you are not or try to get to somewhere or position you are not going to crack you head on anything but the floor if you fall. A few years ago, I was outside on tractor cutting grass, got seizure and ended up in middle of his yard with a big "stripe" I cut in his lawn. Like I said though, my meds and dosage seem to be very good now.

  4. #24
    Senior Member elarson's Avatar
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    Thanks for all of your input IsMaisin.

    For an alarm system, we are looking for something that can be used when he is alone that will connect to mobile phones and emergency services, like the Lifeline with AutoAlert, which also detects falls. With an audio only alarm there would be nobody to hear it.

    Thanks for the info. about the dissolving clonazepam. My husband does have Diazepam (Diastat) for emergency use, but he can not administer it himself if he is alone. We are going to talk to the epileptologist about it, and also Midazolam Nasal Spray, that may be out soon here.

    I hear you about trying to find a solution with AED's, but we are going to give it another try. My husband is currently on about 1/2 the Keppra (levetiracetam) dosage of 1500 mg, and we think it's worth it to try to bump it to 2000 mg, which is still well below the maximum.

    I agree, it's a difficult balance with AED's so you don't end up a zombie. Overall, we found an add-on of a low does of Lyrica (pregabalin, similar to gabapentin) has helped, so increasing that a bit may be an option too, but my husband is more interested in up'ing the Keppra.

    We have tried cannabis, as it's easy to get here in Holland, but also found the consistency not easy to gauge, and some were just way to strong. I'll look into tinctures more. We are also following GW Pharmaceuticals cannabidivarin (CBDV) trials in the UK, that look promising.

    We have looked into service dogs a little. One of our Jack Russell's seems to have some ability at detecting seizures, and he is very good about staying with Rob if a seizure happens. I think an alarm is a better option though, especially because my husband seems to always maintain consciousness now with his current AED's.
    Last edited by elarson; 06-04-2013 at 05:50 PM.
    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).

  5. #25
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    SORRY..I take phenytoin 1000mg 4X/day AND levetiracetam 750mg 2X/day. All taken during day while awake. I do not wake up during night to take any medication.

  6. #26
    Senior Member elarson's Avatar
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    Pantoprazole is an antacid. I've never heard it used an an AED.

    We also got switched to a generic version of Keppra, so maybe you just have the name wrong. Luckily, there were no side effects from the generic version of Keppra, which is something we had with another AED.

    Quote Originally Posted by rlmtrhmiles View Post
    I am pretty sure the pantoprazole is generic keppra. I know I used to take keppra. I think with insurance got changed to the generic.
    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).

  7. #27
    Senior Member elarson's Avatar
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    Oops, we were typing at the same time. This makes much more sense that you meant phenytoin (Dilantin).
    Quote Originally Posted by rlmtrhmiles View Post
    SORRY..I take phenytoin 1000mg 4X/day AND levetiracetam 750mg 2X/day.
    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).

  8. #28
    Senior Member elarson's Avatar
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    Glad to hear that your seizures are under control.

    We are really hoping that up'ing the Keppra just a bit will work.

    My husbands seizures are often triggered by stress, and I think the stress of being alone make them worse.

    Our whole problem is how to get him somewhere safe when he is alone, because he can't transfer to the floor (or vice-versa).

    It's hard to find information about seizures for people using a wheelchair full-time. We *really* don't want to do restraints, because we think they will cause more harm than good, and most studies show that.

    Quote Originally Posted by rlmtrhmiles View Post
    My seizures, am pretty sure, all start in head. I get a sense of things starting to get way warmer than normal. I immediately try to stop ALL movement. This works now. But before I had no idea and I think I was a total mess. Whatever you do, make sure you are not or try to get to somewhere or position you are not going to crack you head on anything but the floor if you fall. A few years ago, I was outside on tractor cutting grass, got seizure and ended up in middle of his yard with a big "stripe" I cut in his lawn. Like I said though, my meds and dosage seem to be very good now.
    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. #29
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    Quote Originally Posted by elarson View Post
    I’ve looked into various epilepsy sites and forums for information about handling seizures while in a chair, but have not found a lot of useful information, and thought I would add on to this thread.

    My husband had bad seizures last week while he was sitting in his chair. He usually has about 1 partial seizure per month, but does not have strong multiple seizures like this, because they are quite well controlled by his anti-epeleptic drugs (AED's) and he has been able to remain in his chair.

    He felt an aura about having a seizure, but thought that he could ride it out in his chair like usual. During the seizure he really banged his ribs hard against the armrests and broke a rib, which caused a stronger seizure. As the seizure progressed, he tipped out sideways from the chair and hit his head very hard on the floor. That caused more seizures and he was on the floor alone and hurt for 2 ½ hours.

    I was away for work, and had been repeatedly trying to reach him on his mobile phone. We had arranged on-call help, but unfortunately his mobile phone was on the desk rather than on his person and it took some time before help could arrive. When help did arrive, it was a very difficult transfer from the floor back into the wheelchair.

    I'm in the process of figuring out a new plan for managing situations when he is alone and has bad seizures. Here are the action items I’m looking into:

    1) Discuss with neurologist about increasing AED’s to try to prevent all seizures (this is highly unlikely after 4 years of trying).

    2) A push button personal alarm system that can automatically detect a fall and has GPS location services to alert me and on-call helpers and emergency services.

    3) More on-call helpers to respond to alarm and check on him, planned in advance.

    4) Formal on-call plan including training and communication protocols for on-call helpers and emergency services.

    5) A lift for floor to chair transfers to be able to get him back into the wheelchair. Either a portable hydraulic manual or battery powered lift from Invacare or Hoyer, an Elk Emergency Lifting Cushion, a bath lift that can be used on the floor. As this would only be used occasionally, we would prefer something that does not always need to be charged.

    6) Physical therapist training to work with him for getting out of the wheelchair onto the ground safely and best ways to use a portable lift.

    7) Seeing if there is anything that can be done to make the ZRA2 chair more stable. Possibly adding the ZX1 power add-on when he his alone will keep it from tipping to the side.

    8) Seeing if there is anything that can be done to make the arm rests on the ZRA2 chair more padded so he does not get as banged up.

    9) Padding the floor in the area that he is usually at by his PC.

    I would be interested in hearing any input and advice about how we can make sure he is as safe as possible when he is alone. We of course try to limit the time he is alone, but it just is not always possible to have someone with him all of the time. Any input would be much appreciated.

    I am so sorry he had such a slew of seizures landing him on the floor. Head injury is a major concern as you know and it can, as you said, trigger more seizures. One option I looked at for a while before I got my service dog, who by the way is a HUGE help, was a soft helmet. At least if I had a drop attack, my head would be cushioned. Of course you look silly, but I figured safety first. Padding the floor as you mentioned is another good option I think. I know you can purchase padded arm protectors and you can also get padding for the whole chair, though I've never tried these myself.

    Since he felt the aura, maybe making a plan to have him work on a way to get to the floor to wait it out before it hits would work. That would take time, of course. Could he get himself to a designated area where you could have extra padding or even a crash pad down in the event he falls?

    I'm interested to see what other ideas surface. I know cannabis helped me, but it is too expensive and I needed a specific strain or it was no good. Please let us know what happens with the trial. It looks interesting.

    Finally, perhaps he could make sure he always has his phone accessible on the chair? I had a bad seizure in my chair where I lost consciousness and bit my tongue. My service dog alerted me, but it progressed faster than usual and I didn't have my phone. Luckily I didn't fall, but just barely. Ever since then, I always bring my phone with me, even from room to room inside. It was a pain at first, but it's saved me too. I hope you find a good solution. Good luck.

  10. #30
    Senior Member elarson's Avatar
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    Thanks for your input Lemur Wheelz. We have made a little progress, but not a lot, and he has since had more falls. When I get a moment I'll update this with more information.
    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).

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