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| | From:  SoulWings (Original Message) | Sent: 4/30/2008 5:32 PM |
Hi all. i have my next neuro appt on thursday. My last seizure was almost two weeks ago. I had the experience of someone actualy watching my behavior either just before or after the seizure. He did not see me bite my tongue bit told me I got up a few times and was gone for a bit. He came to see if I was alright and I didn't verbally respond to him but did get back in bed. Apparently I did this twice but have no memory of this. My seizures happen in my sleep but the past few I find my 'after effects' in other rooms..dropped dishes, lamps, papers etc. I wonder if I start to feel them and think I can 'walk it off' or what causes me to get out of bed. Also, Im sure some of you bite your tongue and lips and inner cheeks. the tongue is very painful. I have used cloraseptic, a mild spray generally used for the throat if it is sore. Also alot of ice water with my tongue hanging in the glass. does anyone know of an over the counter or RX item that helps with the tongue? I generally am very tired for a few days. this time I am getting up on my feet faster and being more active. My daughter was off from her student teaching and took me walking every day, something i usually cannot master for a few weeks after. the vertigo and the stomach flips are still happening. these sometimes happen before a seizure and are slight for a few days afterward. Its been two weeks now and Im still having the vertigo spells. Is this normal for you guys? Again I will talk to my neuro tomorrow. Stay well everyone. You are all in my prayers. Lori |
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On my tongue I usually use the novocaine from tooth gel - any brand. It works but makes me talk silly - sounds like I'm drunk because my tongue's numb and I tend to drool if I'm not careful.
As far as the walking - I'd be so dizzy and in so much pain I never really noticed anything else. By the time that let up, I'd be fine. Or else I'd have another one....
Milinda
From: [email protected]
To: [email protected]
Subject: tongue biting, sleep walking?, vertigo
Date: Wed, 30 Apr 2008 09:32:14 -0700
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tongue biting, sleep walking?, vertigo
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| From: SoulWings |
Hi all. i have my next neuro appt on thursday. My last seizure was almost two weeks ago. I had the experience of someone actualy watching my behavior either just before or after the seizure. He did not see me bite my tongue bit told me I got up a few times and was gone for a bit. He came to see if I was alright and I didn't verbally respond to him but did get back in bed. Apparently I did this twice but have no memory of this. My seizures happen in my sleep but the past few I find my 'after effects' in other rooms..dropped dishes, lamps, papers etc. I wonder if I start to feel them and think I can 'walk it off' or what causes me to get out of bed.
Also, Im sure some of you bite your tongue and lips and inner cheeks. the tongue is very painful. I have used cloraseptic, a mild spray generally used for the throat if it is sore. Also alot of ice water with my tongue hanging in the glass. does anyone know of an over the counter or RX item that helps with the tongue?
I generally am very tired for a few days. this time I am getting up on my feet faster and being more active. My daughter was off from her student teaching and took me walking every day, something i usually cannot master for a few weeks after. the vertigo and the stomach flips are still happening. these sometimes happen before a seizure and are slight for a few days afterward. Its been two weeks now and Im still having the vertigo spells. Is this normal for you guys? Again I will talk to my neuro tomorrow. Stay well everyone. You are all in my prayers. Lori | |
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HI Soul Wings,
I don't know what to do for the tongue. Have you thought about getting one of those dogs that are trained for seizures? It's just a thought for when you are alone. Anyways, Dom tends to wander at night. Sometimes it's hard for me to tell if it's a seizure or night terror or just sleep walking. They all look alike to me. HIs seizures are different and hard to tell. I just put him back to bed. What you are doing is just automatic motions. There is no thought or control for what you do when you are having a seizure, which is why you have no memory of it. I think the dog might help you to stay in a safe place if you want one or can get one. Just an idea.
Sam I am |
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Hi Cherokee. that novacaine toothpaste sounds like a good idea. The cloraseptic also numbs the area but for just a few minutes. Is this item an over the counter toothpaste or do I need a RX for it? My appt. is this afternoon at 4:30. I'll tell you guys what he says. thanks so much for your comforting letters. Lori |
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Hi Sam. I would love a seizure response dog. I used to have a lab for years and I would feel so safe when she was with me. One of my biggest fears is letting myself go to sleep just after one. I didnt think I was sleep walking but obviously I am doing something. Problem is I cannot have a dog in my building. I do have a great cat that senses when I do not feel well but she cannot dial the phone. Maybe my next place will allow one. I do not go outside my apartment ever so I thought perhaps I was just trying to 'walk it off' but have no memory. I saw the neuro yeaterday and he rwas very concerned abut me looking so tired and a bit pale. I still have some vertigo and he told me I had to get some sleep or I was going to have another one..how relaing for me! He is very good natured and just told me to get some rest. He told me the cloraseptic spray was good enough for my tongue and didnt seem to know of anything else. some of you guys said something about a toothpaste with novacaine. I have not seen any of these. the clorasepric spray is used for people with sore throats and has that numming effect and I can just put it on the bit mark. this particular one is difficult because it keeps geting caught on my tooth. Thanks for all your ideas guys. I got a good chunk of sleep in last night and today. Take care all. Lori |
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No, I didn't mean toothpaste with novocaine, just the novocaine type stuff like OraGel, that you put on your tooth when it's aching. It works, but you can't feel your tongue very much so you dribble like a little kid, lol.
Milinda
From: [email protected]
To: [email protected]
Subject: Re: tongue biting, sleep walking?, vertigo
Date: Fri, 2 May 2008 20:21:10 -0700
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tongue biting, sleep walking?, vertigo
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|
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| From: SoulWings |
Hi Sam. I would love a seizure response dog. I used to have a lab for years and I would feel so safe when she was with me. One of my biggest fears is letting myself go to sleep just after one. I didnt think I was sleep walking but obviously I am doing something. Problem is I cannot have a dog in my building. I do have a great cat that senses when I do not feel well but she cannot dial the phone. Maybe my next place will allow one. I do not go outside my apartment ever so I thought perhaps I was just trying to 'walk it off' but have no memory. I saw the neuro yeaterday and he rwas very concerned abut me looking so tired and a bit pale. I still have some vertigo and he told me I had to get some sleep or I was going to have another one..how relaing for me! He is very good natured and just told me to get some rest. He told me the cloraseptic spray was good enough for my tongue and didnt seem to know of anything else. some of you guys said something about a toothpaste with novacaine. I have not seen any of these. the clorasepric spray is used for people with sore throats and has that numming effect and I can just put it on the bit mark. this particular one is difficult because it keeps geting caught on my tooth. Thanks for all your ideas guys. I got a good chunk of sleep in last night and today. Take care all. Lori | |
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| No one can deny U the right to have a seizure response dog in your apartment. It is the law. Go to IAADP.org and they have all info U need on this issue. Sadly, people are still having access rights even to have their guide dogs with them. But, yes U have rights to have that service dog with U at all times. No excuses. I know this for I have a seizure response dog and she is the best thing that ever happened to me and has taught me more about my epilepsy than any doc who received their degree out of a book. |
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It's a working dog, not a pet. That dog is to help you, not a pet. That's different. Get one. You need it hun. Once you get it, let your apt. manager/owner know but also research the laws so you can give them a copy. They cannot evict you because you have a dog to help save your life. Give me some time and I'll research the laws for you. I think the ADA is one: American with Disabilities Act. They may have changed the name. They are always changing laws. Think about it for a minute. If a blind person lives in the apt. and uses a dog to help get around, they cannot refuse them from having one. Right? I think the dog would help you tremendously. I'll also look for some organizations to help. What state are you in?
Sam I am |
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Hi Sam. I live in New York, Putnam county. I remember last year reading over my lease and believe there is some clause about no dogs unless you require one for health reasons. I will start to look into this. for blind people there is a guiding eyes training center near here. Where would I look for a dog? Are they all large dogs or are some small? thanks for bringing this to light for me. I don't think I would have thought this is something I need for myself but my daughter starts grad school in the fall and I don't want to rely on her, even now. she helps me alot but I dont want to be a burden on her. Im excited about his now and will google some info later in the day. Its nice now and my daughter is taking me out for groceries. Love, Lori
From: [email protected]
To: [email protected]
Subject: Re: tongue biting, sleep walking?, vertigo
Date: Sat, 3 May 2008 11:04:51 -0700
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tongue biting, sleep walking?, vertigo
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| From: SamIam1084 |
It's a working dog, not a pet. That dog is to help you, not a pet. That's different. Get one. You need it hun. Once you get it, let your apt. manager/owner know but also research the laws so you can give them a copy. They cannot evict you because you have a dog to help save your life. Give me some time and I'll research the laws for you. I think the ADA is one: American with Disabilities Act. They may have changed the name. They are always changing laws. Think about it for a minute. If a blind person lives in the apt. and uses a dog to help get around, they cannot refuse them from having one. Right? I think the dog would help you tremendously. I'll also look for some organizations to help. What state are you in?
Sam I am | |
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Hello. I use a seizure response dog. I also belong to a very helpful org. called, International Association of Dog Partners. IAADP.org. If you go to the website you can find all the info you need. There is a book that can be obtained that has the ADA(Americans With Disabilities Act) law in it, plus every state law. A must have book I would say if you use a service dog. There is still alot of ignorance when it comes to service animals and not a day goes by that I don't educate someone on them. The blind are still having access problems with their dogs and it is a nationwide problem sad to say. I was told for yrs that I couldn't get on the city transit with mine even though I told them and went to the city manager with still no compliance. I had to have a class and teach them myself even though that should have been done by them. I have no enforcement behind this but have not had any problems boarding. Now just harrassment. But the whole point is I want to be independent and having my dog with me allows that for she carries the weight of epilepsy for me. It's just societies ignorance that sets me back. Good luck! |
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