Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-22-2009, 02:03 PM #21
AintSoBad AintSoBad is offline
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Originally Posted by Dew58 View Post


Waiting to see what response is from Doc, cz. Please let us know what happens.
Are you still have the mini seizures?
love,
Dew
DEW,
I hope you're not responding to me. Or, if you are, it may be mistaken.
I have no tests to do, or anything else further, except my next appt. with Dr Knobler.
If you are asking someone else. I apologize!

Love to you!
Pete
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Old 08-22-2009, 02:09 PM #22
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DEW,
I hope you're not responding to me. Or, if you are, it may be mistaken.
I have no tests to do, or anything else further, except my next appt. with Dr Knobler.
If you are asking someone else. I apologize!

Love to you!
Pete
Sorry DEW!
Maybe you are speaking to me.
If so,
I've finally got my answer!

I used to be a "professional witness" for many things in my profession.

Now, I cannot help but get "tripped up" in testimony!
Ask me many questions, rapid fire, and my brains just "spins out"!

Now, Dr Knobler has me covered for that, Understand, he hasn't "covered me" for the sake of "covering me".
He has the facts, to know,
that I
actually just
"screw up" under hard examination! (questioning).

I'd never, in my wildest dreams, think that there was an explanation!
But, back in the 80's, I remember thinking, there is "No Way" these doctors can Dx my burning pain!
If you need the "Best Care",
You must be able to cover the "Best Doctor's" Fee's.
I see my doctor's fees,
as being as important as food, light, rent, etc.....

He is a Good, God Fearing man,
and I respect him,
with all of my heart!


LORDWOOD!
Are you here?
Are you listening?
I so hope you can get to see, Dr. Knobler!


Love to all,
Pete
asb
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Old 08-22-2009, 08:19 PM #23
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Oh my goodness! I am sooo glad this has been posted. I haven't said anything to my neuro or my GP and PM drs. about brain shivers (shudders) I didn't know what they were and now I do!! I have them the most when I am flaring and yesterday was a really bad day. Now, I can express what is happening to me and my kids and husband can't blame it on the meds.

They tell me to "take a pill" when I am grouchy and yesterday the brain shudders drove me so crazy that even the dogs were tip-toeing around the house for fear of setting me off. Today is much better. I haven't been able to afford the meds that I need as I don't have full insurance coverage until next week and I thought it was that, but I have them whether I have my meds or not.

So, once again someone has confirmed that I am not going crazy and I thank you so much!!
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Old 08-23-2009, 06:33 AM #24
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Default Dear Cindy, I am so happy I posted this for you too.

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Originally Posted by cindi1965 View Post
Oh my goodness! I am sooo glad this has been posted. I haven't said anything to my neuro or my GP and PM drs. about brain shivers (shudders) I didn't know what they were and now I do!! I have them the most when I am flaring and yesterday was a really bad day. Now, I can express what is happening to me and my kids and husband can't blame it on the meds.

They tell me to "take a pill" when I am grouchy and yesterday the brain shudders drove me so crazy that even the dogs were tip-toeing around the house for fear of setting me off. Today is much better. I haven't been able to afford the meds that I need as I don't have full insurance coverage until next week and I thought it was that, but I have them whether I have my meds or not.

So, once again someone has confirmed that I am not going crazy and I thank you so much!!

Cindi, this makes me so happy I posted this,as the reaction of my husband was exactly the same as your family's like it was my fault. It has noting to do with your meds( in all honesty at first I thought, did I take something out of ordre by accident, or something twice) but it just kept happening way too often. I am so happy I can give you some relief and hopefully help you on the road to some answers too. I am dilegently looking for my post to dr. schwartzman so that I may share with everyone what he said they are exactly, I will post as soon as I can. It was very hurtful to me to be unconscious on the kitchen floor, bruised and frightened and have my husband Mad at me. It was the last type of treatment I needed. I hate RSD. this is why I want to live alone. Im tired of others being tried OF MY PAIN! Again glad this post could help Cindi. Although Im sure your family was nicer than my husband! Sincerely, CZ

Last edited by CZZ74; 08-23-2009 at 06:34 AM. Reason: spelling of Cindi!
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Old 09-19-2009, 12:00 AM #25
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Confused I have these too

[QUOTE=CZZ74;553059]thank you for this post, as I know somethingis wrong, I had another bad one yesterday, my husband found me on the kitchen floor unconscious, so either i am having seizures or something is suddenly dreadfully wrong with myy meds. Im frightned, frustrated and trying to hang in there, I remember being like a ping pong ball banging around the kitchen trying to hang on to consciousness and then blacking out at the stove and falling. I remember the begining. See why it is hard for me to belivie im not having seizures of some kind. actually it was more like a ball in a pin ball machine, I could have been seriously hurt instead of just some bad bruises and a couple of bumbs on my head. We cant seem to find out what is happening. But I have not had any of the tests you recommended. Im trying to hang in there, thank you again. cz[/QU



Hello, I have been re-searching (Seizures) I am so sorry you have these, but I am also glad I found someone else, having this same thing as I do.
I can be in the kitchen and I will fall, & my husband has came in & helped me up. I have had about 10 of these *THINGS* The last one I had was off & on for 5 days....This scarred me so much....I have fell off my toilet & hit my head on my glass shower door... The last time I had this happen, I lost a whole day,I don't remember anything of that 1 day.
And I move things, Vitamins etc & the next day I have to hunt to find the things I moved.
I have read alot about Narcolepsy & Catapletic and it does sound like these *SPELLS* that I am having. You might want to look at Brain Talk for it.
I have noticed that if I miss alot of sleep,& don't take a nap, I have one of these, *SPELLS*
I have made an appointment to see my GP Doctor, she treats me for my RSD
its in my left foot, from a fall, but has spread to my right foot also, they are
red,swollen,warm to the touch & painfull.
I sure would like to talk with you, I will try & set up my P. Message here.
Hope to hear back from you. Take Care, Ladybug10435
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Old 09-19-2009, 08:04 AM #26
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Default Ladybut Ill be in touch. ill pm you.

[QUOTE=Ladybug10435;568139]
Quote:
Originally Posted by CZZ74 View Post
thank you for this post, as I know somethingis wrong, I had another bad one yesterday, my husband found me on the kitchen floor unconscious, so either i am having seizures or something is suddenly dreadfully wrong with myy meds. Im frightned, frustrated and trying to hang in there, I remember being like a ping pong ball banging around the kitchen trying to hang on to consciousness and then blacking out at the stove and falling. I remember the begining. See why it is hard for me to belivie im not having seizures of some kind. actually it was more like a ball in a pin ball machine, I could have been seriously hurt instead of just some bad bruises and a couple of bumbs on my head. We cant seem to find out what is happening. But I have not had any of the tests you recommended. Im trying to hang in there, thank you again. cz[/QU



Hello, I have been re-searching (Seizures) I am so sorry you have these, but I am also glad I found someone else, having this same thing as I do.
I can be in the kitchen and I will fall, & my husband has came in & helped me up. I have had about 10 of these *THINGS* The last one I had was off & on for 5 days....This scarred me so much....I have fell off my toilet & hit my head on my glass shower door... The last time I had this happen, I lost a whole day,I don't remember anything of that 1 day.
And I move things, Vitamins etc & the next day I have to hunt to find the things I moved.
I have read alot about Narcolepsy & Catapletic and it does sound like these *SPELLS* that I am having. You might want to look at Brain Talk for it.
I have noticed that if I miss alot of sleep,& don't take a nap, I have one of these, *SPELLS*
I have made an appointment to see my GP Doctor, she treats me for my RSD
its in my left foot, from a fall, but has spread to my right foot also, they are
red,swollen,warm to the touch & painfull.
I sure would like to talk with you, I will try & set up my P. Message here.
Hope to hear back from you. Take Care, Ladybug10435
Ladybug, pm me your email, Ok. look forward to talking with you, cz
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Old 11-16-2010, 04:45 PM #27
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Confused Brain Shudders

I am new to Neurotalk and I have a fairly recent diagnosis of CPRS/RSD. I want to thank you for this discussion. I am on so many meds is rediculous, so I am not discounting the fact that it could be one of the many.
Yesterday toward late afternoon, I had several episodes of a wierd sensation in my head. I had a sense of presure on the lt/rt of my head at the temples, then I would ear a popping and sizzling sound, then the room would spin. It got so bad I sat on the floor. I got really sick at my stomach. I really thought I was going to pass out. Just as I was feeling better, my husband came home and took me to urgent care, they knew nothing about RSD. Today I have a funny head ache and I feel just a little topsy. Does this sound familiar to any one? Thank you, Yukiko
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Old 12-11-2010, 12:49 PM #28
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Originally Posted by loretta View Post
Hi CZ,
I'm 14 years into RSD,now generalized or full body. I had been having on a regular basis, the electric jolts, shocks, jerks go thru my body and brain. It would be while sound asleep or going to sleep or relaxing in front of TV. My neurologist put me up to 3200 mg. neurotin to get them under control.
One morning, when I woke up and got up, I started stumbling-ran in the wall, door, and got to bathroom and passed out. I remember hitting the floor. My husband was upstairs-when I woke up I couldn't get up, but army crawled to door and banged on it. He said I'd been out an hour to hour and half. lost bladder and colon. He got a robe on me before the paramedics got there. One couldn't find a pulse, I was going in and out. said he thought I was dead. Tried the other side and blood pressure was 60/40. Spent 4 days in semi ICU. Lots of tests RSD . My neurologist said you usually have more. A friend of mine has had 4. I haven't had any more. And I just went off the neurotin january this year. I hated the way it made me feel and the weight gain. Lost 30 lbs and now working on my last 30. It wasn't a gran mal seizure.
I haven't had any more spells.--well a couple small spasms.
Hope this has helped. Take care, loretta
Loretta, I am 4 - 5 years into RSD. I spent the ENTIRE summer of 2009 in a hospital due to "seizures & fainting". I would get shock feelings in my face, lips, brain and arms down my hands and then seize. My husband took me to the ER. They did ALL kinds of tests and even an EEG (which showed nothing). My doctor said that it was in my head due to my pain. I was diagnosed with Conversion Disorder (a mental disorder) by my PCP. They sent me to a therapist (which in the long run has been a good thing). My therapist, to this day, has not agreed with the diagnosis of Conversion Disorder. I have always wondered if these "seizures" were complications of RSD. I am so greatful to hear that I am not alone and NOT crazy!!! And at the same time, so very sorry to hear that others have to go thru the same thing.

My docs did put me on 2 different types of seizure meds that stopped the "seizures". I am planning on talking to the Dr's at Mayo Clinic when I go on the 28th. Thank you ALL for this info I can not tell you how much peace you have given me!!!

May God Bless you with Peace and Pain free sleep

Renee'
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Old 01-09-2012, 12:33 AM #29
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Default I also had a seizure

  • I had a seizure when I first having very I'll and sickness . It was 3 years ago on Christmas. The doctors said it was from stopping Xanax and my body went in withdrawl I guess cause it fit the situation. But I knew it wasn't withdrawl I used it for a week cause I was in such agony when I was awake. Thanks to reviewing your post I now know it was rsd. I also see dr Swartz Ann for full body rsd. I didn't tell him I had a seizure 3 years ago. Good luck and thanks for that information. I wishi new about this site years ago and also that I knew it was rsd. Didn't find out what I had for over 3 years & 15 drs. Dr Swartzmann knew I had it as soon as he looked at me and asked one question. Good lock and I love all of my rsd family
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Y
Quote:
Originally Posted by CZZ74 View Post
Hi I wanted to share this incase it helps someone else and saves you some time. I am in years 6 of my rsd, full body have had every treatment in the world literally including coma in Germany. Last year I began having seizures. Terrible ones. they mimic petite grand mal. The brain shudders are terrible and painful. The seizures continue, I am conscious through them , they most happen at night and in am just as I am waking. I have had one during day. I wrote dr. Schwartzman he said they are not seizures in the traditional fashion it is the rsd corrupting my central nervous system causing these events. If I could find the email i would quote him exactly. They have become so frequent and severe that over the past 6 months i have managed to get all the way from Cat scan of the brain- results nothing- to mri of the brain- nothing to the ulitmate test MRA of the brain with contrast- results perfectly normal. So Dr. Schwartzman was right. I was sure he was wrong and i had developed epildepsy from the coma- alot went wrong. I thought this might be helpful to anyone else suffering these seizures and brain shudders. It is alwasy the rsd. very depressing in a way as nothing can be done. Please post if you have these too and what meds you are taking and if it is working thank you cz
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Old 01-09-2012, 06:49 PM #30
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Okay,
After reading all the posts on this point I feel compelled to tell my little story.
Lately I'm losing my balance more and more due to degenerative cerebral atrophy and whenever I "go down" it's like my legs give out and for a short time I feel as if my brain becomes unplugged or like a pause button gets pushed.
I fell getting out of the car the other day and my wife said she never saw such a blank look on face. It always scares the gagibbers out of me when it happens.
I think having something happen to me with such lack of control is what scares me the most...
Jimbo,

Of all of the symptoms I have endured the balance and falls are right up on there on the misery scale. Sometimes I would walk through a room and duck my head because I thought the ceiling was going to hit me. Part and parcel was not being able to judge where something was when I reached for it. It was clear to me that proprioception issues were worsening as my CRPS progressed. I now have a service dog who alerts me to falls before I even know they are coming. The thing that greatly improved my balance, however, and has reduced my falls is tDCS. Prior to tDCS I was keeling over sometimes several times a week. I feared that it was only a matter of time before one of those falls either ignited a new source of CRPS, or caused severe injury. Although I still fall I have not fallen in two weeks.

Hope this helps!
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