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Unread 12-27-2012, 11:44 AM   #1
ava
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Default New here, have a question about RSD

Hi,
I am here trying to find some answers/help for my niece who has RSD.

I was wondering if anyone knows of memory loss with this condition.

About four weeks ago my 14 year old niece started having episodes where she would pass out for a few seconds. With each episode, she lost memory.
This happens about twice an hour. She just peacefully goes out for about 45 seconds or so. She now has no memory of her childhood or me, or her parents for that matter.

It's almost like she has two different types of episodes...one where, while she is out she can hear and not feel but remembers where she is when she comes to.
The other episode, she can't hear while she is out and when she comes to, she doesn't know who she is, where she is and so on.

My question is, has anyone else ever experienced this with RSD or can you lead me in the direction where I can talk to someone who has.

This has her doctors completely baffled and mystified....

Thank you so much for taking the time to read my post. Any input would be greatly appreciated.....
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Unread 12-27-2012, 12:57 PM   #2
loretta
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Originally Posted by ava View Post
Hi,
I am here trying to find some answers/help for my niece who has RSD.

I was wondering if anyone knows of memory loss with this condition.

About four weeks ago my 14 year old niece started having episodes where she would pass out for a few seconds. With each episode, she lost memory.
This happens about twice an hour. She just peacefully goes out for about 45 seconds or so. She now has no memory of her childhood or me, or her parents for that matter.

It's almost like she has two different types of episodes...one where, while she is out she can hear and not feel but remembers where she is when she comes to.
The other episode, she can't hear while she is out and when she comes to, she doesn't know who she is, where she is and so on.

My question is, has anyone else ever experienced this with RSD or can you lead me in the direction where I can talk to someone who has.

This has her doctors completely baffled and mystified....

Thank you so much for taking the time to read my post. Any input would be greatly appreciated.....
Hi Ava, I'm so sorry about your niece having RSD. I know the passing out is very scary. It has happened to me many times. I am 64 and had RSD 16 years. Wasn't diagnosed for 5 years. RSD is a disorder of the autonomic nervous system. Which is composed of the sympathetic nervous system, parasympathetic nervous system, vegas nerve. If you look up those words and their functions you will understand the conditions of a body with RSD. With RSD there is no automatic regulation of body temperature-hot or cold- heart rate-fast or slow- blood pressure high or low- it can fluxuate wildly. When the blood pressure drops, too low, we pass out. I own a blood pressure kit I bought at Costco for about $40. It also has a read out on heart rate.
I have 'signs' before passing out- my hearing diminishes,feel hot sweaty,
sometimes nauseous, need to sit down-weak. When I feel this way, I need to immediatly sit down and elevate legs for the blood to get to brain. I'm usually out for a few minutes, but have been out for several hours. The first time this happened to me I was out for several hours and the paramedics
couldn't find a pulse and told my husband I was gone. Was in icu for 4 days/
I actually am on blood pressure medicine for high blood pressure. Also am on medication for too fast heart rate tachycardia. When the heart rate gets too low it's called bradycardia. That can cause passing out.
If you put in these different words in internet and look under wikipedia for definition, it will explain their functions.
I don't know the answers for her not knowing her name etc. I would think she needs to see a neurologist familiar with RSD. I always know my name, where I am etc. I have no memory of the time while out of even how I get from the floor to couch etc. immediatly after coming out of it.
I hope this helps. The most common cause of passing out is the drop in blood pressure. I would be concerned about her not having memory of who she is. When I'm out I have no memory of being out. Hope this helps. There is a medical term for this condition, but I forget what it is. I can't imagine how scary this is for your niece too. Let me know how she is doing and what the Dr. says. I saw my Dr. about 2 weeks ago and told her about my recent spells of passing out and the first question she asked me is '"if I remember who I am and where I am when I wake up" My answer was yes. So her asking me that concerns me about your nieces symptoms. Does that make sense? Take care, loretta
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Unread 12-27-2012, 01:49 PM   #3
ava
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Originally Posted by loretta View Post
Hi Ava, I'm so sorry about your niece having RSD. I know the passing out is very scary. It has happened to me many times. I am 64 and had RSD 16 years. Wasn't diagnosed for 5 years. RSD is a disorder of the autonomic nervous system. Which is composed of the sympathetic nervous system, parasympathetic nervous system, vegas nerve. If you look up those words and their functions you will understand the conditions of a body with RSD. With RSD there is no automatic regulation of body temperature-hot or cold- heart rate-fast or slow- blood pressure high or low- it can fluxuate wildly. When the blood pressure drops, too low, we pass out. I own a blood pressure kit I bought at Costco for about $40. It also has a read out on heart rate.
I have 'signs' before passing out- my hearing diminishes,feel hot sweaty,
sometimes nauseous, need to sit down-weak. When I feel this way, I need to immediatly sit down and elevate legs for the blood to get to brain. I'm usually out for a few minutes, but have been out for several hours. The first time this happened to me I was out for several hours and the paramedics
couldn't find a pulse and told my husband I was gone. Was in icu for 4 days/
I actually am on blood pressure medicine for high blood pressure. Also am on medication for too fast heart rate tachycardia. When the heart rate gets too low it's called bradycardia. That can cause passing out.
If you put in these different words in internet and look under wikipedia for definition, it will explain their functions.
I don't know the answers for her not knowing her name etc. I would think she needs to see a neurologist familiar with RSD. I always know my name, where I am etc. I have no memory of the time while out of even how I get from the floor to couch etc. immediatly after coming out of it.
I hope this helps. The most common cause of passing out is the drop in blood pressure. I would be concerned about her not having memory of who she is. When I'm out I have no memory of being out. Hope this helps. There is a medical term for this condition, but I forget what it is. I can't imagine how scary this is for your niece too. Let me know how she is doing and what the Dr. says. I saw my Dr. about 2 weeks ago and told her about my recent spells of passing out and the first question she asked me is '"if I remember who I am and where I am when I wake up" My answer was yes. So her asking me that concerns me about your nieces symptoms. Does that make sense? Take care, loretta

Thank you for your response.
My niece has no warning of the passing out. It just happens. If she is walking somewhere and one comes on she falls to the floor. They have to watch her all the time.
The other day she was here for Christmas dinner and while she was eating one came on and she fell back in the chair like she is in a peaceful sleep for like a minute or less. Luckily I had wheeled my computer chair to the table for her to sit in. This way she had arms on either side of her and a comfy high back. Poor kid.
I have been searching and searching about RSD and have spent many hours on the computer trying to learn all I can so I can be of some help.
I have yet to find anyone with the same passing out episodes...Many are just like what you described. Some have short term memory loss from lack of sleep.
Do you still have RSD? Are you in remission?
My nieces came on after getting a cerebral angiogram. I can't believe all the stuff I am reading ....it is heartbreaking and yet strangely a comfort to know there are others out there.
My niece has had it for nearly three years.....for the first two and 1/2 years she was told it was in her head. Sad,,,,very sad...I am learning so much..
Thank you for taking the time to respond.
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Unread 12-27-2012, 04:27 PM   #4
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Originally Posted by ava View Post
Thank you for your response.
My niece has no warning of the passing out. It just happens. If she is walking somewhere and one comes on she falls to the floor. They have to watch her all the time.
The other day she was here for Christmas dinner and while she was eating one came on and she fell back in the chair like she is in a peaceful sleep for like a minute or less. Luckily I had wheeled my computer chair to the table for her to sit in. This way she had arms on either side of her and a comfy high back. Poor kid.
I have been searching and searching about RSD and have spent many hours on the computer trying to learn all I can so I can be of some help.
I have yet to find anyone with the same passing out episodes...Many are just like what you described. Some have short term memory loss from lack of sleep.
Do you still have RSD? Are you in remission?
My nieces came on after getting a cerebral angiogram. I can't believe all the stuff I am reading ....it is heartbreaking and yet strangely a comfort to know there are others out there.
My niece has had it for nearly three years.....for the first two and 1/2 years she was told it was in her head. Sad,,,,very sad...I am learning so much..
Thank you for taking the time to respond.
Hi Ava, thank you for your message. Again, I'm so sorry about your niece. I can't imagine having a child with this disorder (or niece) I have heard of ones getting RSD from procedures, even like a blood draw (the needle) so I ask for a butterfly needle which is smaller and less invasive as regular blood draw needle.
Even though I have full body rsd-16 years I still take precautions. even going to the dentist, as you can get it in the mouth. I take anti-biotics before appt. and use 'laughting gas' to relax. My dentist read up on it before treating me.
Mine started following breast surgery(benign tumor) got frozen shoulder (rsd) spread to other shoulder then feet-full body or generalized they call it.
It is tough. I would assume a cerebral angiogram is an invasive procedure.
I'm so sorry. Is it in any of her limbs? the hands and feet are critical to keep mobile- physical therapy has kept me mobile and using limbs, although one hand is permanently partial frozen.
I think the pain, medication, losses of all kinds, many of us deal with depression, so please watch for signs in your niece. Professional counseling helped me tremendously deal with various losses and coping with the pain etc.
The passing out is scary, I take my blood pressure kit everywhere, as that is my cue when it starts dropping, but I have passed out with no warning at all cracking my head on tile floor.
What does the Dr. say? She must have had something going on before rsd to have such a procedure. Her memory issues following events puzzles me. Take care, loretta
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Unread 12-27-2012, 05:19 PM   #5
Rrae
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Smile Hello Ava!

Welcome to NT!

It's good of you to be seeking out support on behalf of your niece. RSD is a terribly frustrating condition. You'll be amazed at how many members here battle it (including moi) .
Please check out the forum specific to RSD discussion. Here's the link to take you there (you'll also find it in the main menu under health conditions):

http://neurotalk.psychcentral.com/fo...aysprune=&f=21

The people here are wonderful and there's alot of good information at the top of the screen when you get to the RSD forum (Called the 'Stickies')

It's so good to have you! Just holler if you have any other questions or need help in finding your way around!

Rae
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Unread 12-28-2012, 01:44 AM   #6
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Ava,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

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Unread 12-28-2012, 09:10 AM   #7
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Thank you so much for all the wonderful warm welcomes.
It is so nice not to feel alone out there.

Today I go with my niece and my twin to get the results of a 72 hour EEG they did a couple of weeks ago. I hope they have some news for us so we know what is going on.

My niece also has an AVM and I wonder if that is making her condition react a little differently then others I have read about RSD.

Like many of you here, she has been through hell and back.

Yes, the pain is in her right leg...it use to be in her stomach and it would come and go. Now it is constant in her leg. Her leg has spasms almost non stop and if anyone touches that leg, it goes nuts. It also turns a blueish color from time to time.
Of course it is always worse at night so she isn't getting sleep, especially the REM sleep. I have read that is so important.

Thank you so much for listening and offering your opinions. It means a lot to me as this is a new journey for all of us in the family.

Her memory loss is just another part of it and we will learn to cope. I can't imagine how confused and scared she must be.

I will be asking lots of questions so please just bare with me as I try to put all the pieces together. Thanks again. It means so much.
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Unread 12-28-2012, 02:26 PM   #8
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Hi Ava and welcome. I see that Rrae has given you the link for our RSD forum...just click on it and you'll be there. http://neurotalk.psychcentral.com/fo...aysprune=&f=21

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