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Old 07-22-2019, 07:09 AM #181
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How are you feeling today?
fondly
bobby
Hi Bobby ~ Good to hear from you today. Day two of the migraine, still some symptoms, but not as bad a headache/nausea as last night. Thank you for asking.

How's the heat in your neck of the woods? It's going up to 100 today again. Yesterday it went up to 114 with 100% humidity and storms in the evening again. I tried sitting outside but it was difficult to breathe. One thing though, the rumbling of distant thunder was somewhat calming to hear.

Did you wake up feeling less depressed this morning, since you increased your medication? How's that anxiety too? Will maintenance be coming to check out your A/C today? Wishing you a much cooler day for you. Will check in with you later on today.

Hugs,

Blue
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Old 07-22-2019, 07:42 AM #182
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I think your neck of the woods is warmer than mine. I can't believe you went outside. I don't think that was a good idea. As usual I had trouble sleeping but I am not depressed. Will talk to the super today. The energy saving didn't turn on so it just ran all the time. I am trying to prepare myself for a 400 dollar electrical bill. My anxiety is better. Have a doctors appt this morning about my cholesterol.
Fondly
Bobby
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Old 07-22-2019, 01:08 PM #183
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Blue

The jerking of the arm, sounds very much like an simple partial or an
ugh, I can't remember the other name of an jerk seizure. The ones
you don't remember things for hours at a time, well those could easily be complex partial. And it would be like the ones Derrick can have, but in his case he would probably go to sleep in the middle and wake up in the middle. He is also known to be able to walk around in them and go places. Like crossing an street. So the fact that you were in a meeting, and someone smiled or talked to you and you don't remember makes sense to me.

It also may be part of the reason, that people are acting funny around you.
It may not be that they don't want to be friends, but that you aren't responding when they try. That was a lot of Derrick's problem. But he had an fantastic
1st and 2nd grade teacher. She pretty much taught the kids how to help him. They took good care of him, and watched out for him.

The zonegran and lamictal he is on right now are the two he has had the best luck with medicine wise. Other than dilantin.

The VNS, works for about 9 to 10 years, with its battery then needs replaced. The battery runs down. This is his third one. And he has been lucky its worked so well.

Donna
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Old 07-22-2019, 06:09 PM #184
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I don't think so. They sound like unhappy toxic people.
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Old 07-23-2019, 10:39 AM #185
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Blue

The jerking of the arm, sounds very much like an simple partial or an
ugh, I can't remember the other name of an jerk seizure. The ones
you don't remember things for hours at a time, well those could easily be complex partial. And it would be like the ones Derrick can have, but in his case he would probably go to sleep in the middle and wake up in the middle. He is also known to be able to walk around in them and go places. Like crossing an street. So the fact that you were in a meeting, and someone smiled or talked to you and you don't remember makes sense to me.

It also may be part of the reason, that people are acting funny around you.
It may not be that they don't want to be friends, but that you aren't responding when they try. That was a lot of Derrick's problem. But he had an fantastic
1st and 2nd grade teacher. She pretty much taught the kids how to help him. They took good care of him, and watched out for him.

The zonegran and lamictal he is on right now are the two he has had the best luck with medicine wise. Other than dilantin.

The VNS, works for about 9 to 10 years, with its battery then needs replaced. The battery runs down. This is his third one. And he has been lucky its worked so well.

Donna
Hi Donna ~ I thought about this too, why people act funny around me. I have absolutely no recollection that I attended that meeting. I had thought of going but I never wrote it down on my calendar, which is another mystery. I did check with a few other people who went and they said they saw me there, but I was sitting off in a corner avoiding everyone which they all thought was odd, unusual behavior, as I am usually very outgoing. The one neighbor that originally brought this up to me I have known for a very long time in other senior homes and she said I hurt her feelings. I had wondered why she had been avoiding me lately. I did apologize but it didn't seem to make a difference with her,she still avoids me.

One other person I got close to for awhile here where I live now, mentioned to me that at times I am suddenly distant, remote and off-putting and she felt it was very difficult to be a close friend as I am never consistently the same, which caused her to feel I was unsafe to be around. Great She now avoids me too.

I wish I could hang out with a close friend who could be watchful and let me know that either I am not there or something else is going on with me. This is why I isolate and keep away from people now. I have to hope that the Lamictal will work for me and hope that it will settle me down.

Your son is soo lucky to have you advocating for him and getting a community of people to watch out for him and help him !! That is soo special, to be able to celebrate the difference he brings to this world. I understand this, as no one celebrated my differences while growing up. I was shunned, ridiculed and avoided my whole childhood. I never understood why I was not like other kids my age, now I am getting a better appreciation.

I remember once I was sent to my aunt's school up in New England, as she is a Special Ed teacher. Then I was sent back home and I overheard her say to my mother that there is nothing she can do to help me as she does not understand what is wrong with me.

I had never thought much about this as being seizure driven until you brought it up. You have been an inspiration for me Donna in your willingness to come forward to help me. I cannot express enough to you how appreciative I am for you. Now I can take this new information to the appropriate doctor for better treatment options.

Blue
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Old 07-23-2019, 10:52 AM #186
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If you go to look up the new book by David Balducci called "One Good Deed", the front of the book picture is exactly what happens to my vision and the colors that I see when in an altered state.

I tried to copy it here but unable to.

Anyway, this is what my world looks like from time to time, the altered colors and building that are odd shaped and sway. I remember one day when I saw the buildings having odd shapes and swaying that we were having a earthquake, then I saw black as things changed and then everything looked normal. It only lasted a few seconds. I was out walking in my neighborhood and I tried to make it home quickly, but the landscape under my feet kept changing, so I had to stand still to wait until either something changed or I could get help.

This all happens randomly.

Blue
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Old 07-23-2019, 03:51 PM #187
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Blue

I'm going to suggest you specifically sit down the two people you talked
about that were friends. Explain to them what is going on. Let them
know its just starting to dawn on you that they could be seizures.

Let them know that its scary for you too. And you would really appreciate
it if they would help you keep a diary of what they see, maybe even
give them each a book to keep. Ask them to please be your friends
who are your eyes when you can't be.

Also I went and put the words alice in wonderland syndrome in the search.
It brought up, a area for the epilepsy foundation. It was were I had
been reading the stories of children. You might want to go read
through that. It also has some in Neurology Now, which I've read too.

And when it comes to Derrick, I have always been his champion. But
I really believe the reason his classmates were his too. Was the teacher that set the plan in place so he wasn't isolated in childhood. See she was both his 1st and 2nd grade teacher. And then the plan was carried through grade school.

Donna
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Old 07-23-2019, 04:47 PM #188
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Quote:
Originally Posted by Dmom3005 View Post
Blue

I'm going to suggest you specifically sit down the two people you talked
about that were friends. Explain to them what is going on. Let them
know its just starting to dawn on you that they could be seizures.

Let them know that its scary for you too. And you would really appreciate
it if they would help you keep a diary of what they see, maybe even
give them each a book to keep. Ask them to please be your friends
who are your eyes when you can't be.

Also I went and put the words alice in wonderland syndrome in the search.
It brought up, a area for the epilepsy foundation. It was were I had
been reading the stories of children. You might want to go read
through that. It also has some in Neurology Now, which I've read too.

And when it comes to Derrick, I have always been his champion. But
I really believe the reason his classmates were his too. Was the teacher that set the plan in place so he wasn't isolated in childhood. See she was both his 1st and 2nd grade teacher. And then the plan was carried through grade school.

Donna
Thanks Donna ~ WOW, I like that teacher that helped Derrick in 1st and 2nd grade. I remember my third grade teacher, in front of the whole class, said she wished she could break open my head and pour some common sense and knowledge into me. I was called stupid by my classmates as my teacher set the example, put in the back of the classroom and never called upon to answer any questions. I got F's and almost failed 3rd grade until I told the Principal what happened. Mrs. Cook, was her name. I remember exactly the scene, how she sat, what she looked like and what she said and how the students responded. But that was back in the early 50's.

I will think about what you suggested. One of my closest friends, whom I helped daily with her mobility issues and care of her cats for two years, found out I was taking an anti-psychotic and told me she never wanted me near her again, in her home, etc. She said she had never seen any evidence I was psychotic but it scared her. I tried to explain to her that it was being used off-label and not for psychosis, but it didn't matter, the damage was already done. So, I am a little leery of informing anything else about myself. I will just hope that, with time, the Lamictal will help me in that respect. I will continue to stay away from the residents that live here for the time being.However, if the subject ever comes up again, I might talk about it, will see.

This is not a caring group of women I live with and I have seen what they will do to those less fortunate here. The gossip is cruel. The two friends that are avoiding me are in their late 80's, so will leave it be for now and see what happens. It was a helpful suggestion, Donna, if I lived in a more caring group of tenants, it might work. In two years after my bankruptcy discharge, I will be leaving here for a fresh start in another county far from here.

Blue
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Old 07-23-2019, 05:23 PM #189
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sending hugs
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Old 07-23-2019, 05:44 PM #190
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Quote:
Originally Posted by Dmom3005 View Post
Blue

I'm going to suggest you specifically sit down the two people you talked
about that were friends. Explain to them what is going on. Let them
know its just starting to dawn on you that they could be seizures.

Let them know that its scary for you too. And you would really appreciate
it if they would help you keep a diary of what they see, maybe even
give them each a book to keep. Ask them to please be your friends
who are your eyes when you can't be.

Also I went and put the words alice in wonderland syndrome in the search.
It brought up, a area for the epilepsy foundation. It was were I had
been reading the stories of children. You might want to go read
through that. It also has some in Neurology Now, which I've read too.

And when it comes to Derrick, I have always been his champion. But
I really believe the reason his classmates were his too. Was the teacher that set the plan in place so he wasn't isolated in childhood. See she was both his 1st and 2nd grade teacher. And then the plan was carried through grade school.

Donna
Donna ~ Thank you for looking up the Alice and Wonderland syndrome in the Epilepsy Foundation and Neurology Now. I'll go and read, especially the children stories. Thank you for looking on my behalf *smiles*

I know Louis Carroll who wrote Alice and Wonderland was thought to suffer from either Epilepsy or Migraine.

This is how my life has shaped over the years.

Hugs,

Blue
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