Seizures, brain Shudders and RSD
 

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

I'm so sorry you have to go through this!

It certainly is great knowing *of* this, but if I were to get seizures I'd do what you did, have everything under the sun and epilepsy excluded by my doctors. I wouldn't automatically presume that it was the RSD and leave it at that. I think that that's the ultimate message, rather than... if you have this then it *is* RSD.

Thanks for sharing!

Good point
 

I think your right Marlene, you really should check it out for yourself- I was just in disbelief RSD could cause this too. thanks for your reply, cz

"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." by CZZ74

Wow, this is really something! My baby sister, Val (48), has been dx with MS and I have CRPS I. We share many of the same symptoms...and really, if you think about it, the "burning" pain is the same pain. We also take a lot of the same medication. Val has infusions every other day and the heat and walking wears her out. She still works a full time job, and makes herself keep moving as the doc told her that one day she would not be able to comb her own hair:(

Val had 5 or 6 grand mal seizures(sounds like the name?) before she had the gasteric by-pass surgery. The weight had to come off or she would have died. Before the surgery, she had a cat scan, MRI's,etc., and it was discovered that she was in early stages of MS. The doctor believes it was caused by the seizures, as there is no family history of MS. Val completed the bypass surgery and lost over 170 lbs, and she went from 30 pills a day to none. All of her medical issues went away with the weight.

1 1/2 yrs passed, and she started having the burning pain, the chronic exhaustion, not being able to use her hands or legs very well because of lack of control. It was then that she was dx with full blown MS. Also, the meds she takes has put 80 lbs back on her small frame.:(

" rsd corrupting my central nervous system", could this be making lesions on the brain, which leads to MS?


I am not trying to scare you with this information. I am so sorry you are having these seizures. Please call upon me should you ever need a friend.:hug:

Thanks for writing this!
I'm going to see Dr Knobler, (Dr Schwartzmann's ex parter, from Jefferson) this Wednesday. And, I'm having such difficulty, trying to describe what's going on with me!
I need him to write a letter (his wife called me a few weeks ago, about some other business, and she caught me during a crying spell. She immediately took the reigns, and wanted to do whatever could be done, so they're going to write a letter to me, to or for, the court. (divorce issues). Anyway, I was supposed to fax or email her something, and I'm just stuck!
I can't come up with the words, to describe what's going on with me!
(Understand, I have RSd, Tos, Tbi, etc.) so the tbi gets in the way of the pain , and v,v.
I probably have six or so letters started on this computer. As soon,
as I try to 'think", I get confused. "Flooding" is horrendous, if any of you know what that means to a tbi person, it's like a computer with not enough RAM. The little clock will spin, until it crashes the computer....
It drives me NUTSO!
I can't even go into it all here, or, I'll wreck my afternoon.
But, I DO know of what you speak!
Dr S. is Correct! I do believe.
Now, I add a TBI to to RSD, and what gives???
AGH!

Best Wishes for being well!

Pete
asb

thanks for the information on MS
 

Dew, wouldnt the mra have shown lesions/ that is what I was expecting to show, it was so hard for me to belivie this is all rsd. But it was perfectly clear. So what do you think? thanks, cz

Good luck to you Pete
 

Pete good luck to you. I hope you are able to finish your letter and that you are given the help you need there. Let us know and take care, cz

I am going to chime as the "view from the other side".

I have epilepsy and RSD, and have had the epilepsy long before the RSD/CRPS.

One of the things you learn very early on in epilepsy/seizures, is that an MRI/CT scan ONLY picks up structural changes in the brain, and most people with epilepsy and seizures have perfectly normal scans. My MRI's and CT's have all been fine. Another thing to remember--- if you've had an EEG, that also came back "normal", is that EEG's usually only show seizures/epilepsy if you are actually having a seizure during the EEG. Some of my EEG's have been normal, some abnormal and I definitely have epilepsy.

Plus, Not all seizures result in loss of consciousness or "convulsing". There are several types (simple partials, atonic, myoclonics) that do not result in loss of consciousness, but rather a "funny feeling", twitching, weird sensations, dizziness, fogginess etc.

My suggestion is to not be so quick in blaming the RSD/CRPS. If you haven't already, please get a referral to see a good NEUROLOGIST (a neuro specializes in the brain, a PM dr treats pain-- I would never let my PM dr touch anything to do with my seizures/ epilepsy). He/She can guide you in the best direction. I would ask for an EEG, sleep deprived EEG and a thorough work up. The last thing you need is to be dealing with seizures--- that could possibly get worse, especially if not properely treated.

On another note, some pain medications and supplements are also known to cause seizures, so, a Neurologist would be able to help figure out if that is what is causing them....

Good Luck, but please don't give up and automatically assume its the RSD/CRPS before investigating more !

:) L2L

Thank you for this 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

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:hug:

Loretta, that is the closest description to what is happening to me,. I am so so sorry this has happened to you. We know how terrifying it is. Was it diagnosed? That is exactly how mine come on. exactly how I loose conscoiousness etc. I hope they diagnosed you. thank yoiu so much for posting this, until it, I was begining to think I was losing it. sincerely , cz

Hi CZ,
Thanks for the reply. How many have you had? My Dr. thinks my waking up stubbling was due to drop in blood pressure. The para sympathetic nervous system causes drop in pressure, which in turn, causes losing consciencousness. The sympathetic nervous system causes high blood pressure, which i take 2 blood pressure meds for. RSD is an autonomic disorder, which means it effects the involuntary organs that cause all these problems. Organs like the heart, lungs, circulation, bladder, kidneys, I think that's why I lost control of bladder and colon. I've had my blood pressure drop since that 'event' but not to the point of passing out. My Dr. told me to be careful of lowering my head when washing my hair, bending down shopping on a low shelf. I've had to have my husband come and get me from doing that shopping, felt like I was going to pass out and didn't trust driving my car home.
I've been off the neurotin 7 months now and still don't have the electric shocks. I did a couple, but the first one was after I called a friend to check on her daughters pregnancy and found out the baby died inutero. Had a electric jolt that night.
Again, do you check you blood pressure often? I do, I can tell when it starts to drop and am cautious. I know how scary it was, I don't remember the trip to the hospital and thought I was going to die. This has been at least 4 years ago and my husband still checks on me every morning. Take care and let me know how you are. Your friend, loretta soft hugs:hug:

so glad i've found someone w/epilepsy AND RSD!! i've had epilepsy - like u - for many yrs before RSD. Had 2 grand mals at the outset, then petite mals, then pretty much controlled until RSD! i take Tegretol XR 200mg 4 times/day, Tegretol XR 100 mg at nite, & 80 mg Phenabarbitol at nite just 4 epilepsy. For 16 mos. i've taken 1500 mg Neurontin, 10 mg Lexapro 4 RSD and Ativan for "impending" seizures. i see a PM dr, psychol., orthoped., OT 4 therapy, & neurolog. 4 seizures. all my drs work together before trying new meds. i'm blessed. :) i agree w/ur entire message!! anyone having seizures needs a good work up by a neurologist. wishing all of u a pain-free night! :wink:

cz -

Sorry to be late here, but yesterday, by coincidence, I had a brain MRI with and without contrast on a Tesla 3 machine, which is supposed to be able to measure the corticol thickness of the/my anterior insula (AI). See, "The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions," Geha PY, Baliki MN, Harden RN, Bauer WR, Parrish TB, Apkarian AV, Neuron 2008; 60: 570-581, full text at http://www.rsds.org/2/library/articl...aliki_etal.pdf.

But why I write is that just as the constrast was being pushed into my arm, I was bombarded with a rapid-fire high-pitched "pinging jackhammer" sound, which was definately a first for me. I later asked what it was, and found out that it's an actual real-time blood perfusion test, previously the province of PET scans and their accompanying isotopes. See, "Chronic Pain with Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assesed by Single Photon Emission Computed Tomography," Fukui S, Shigemori S, Yoshimura A, Nosaka S, Reg Anesth Pain Med. 2002; 27(2): 211-213, full text at http://www.rsds.org/2/library/articl..._Yoshimura.pdf. (And all this at a university hospital where both the facility and the radiologist are providers under just about any insurance coverage.) And just where do we cross over into fMRI territory?

Do you know by any chance if you had a profusion (rCBF) study done? If not, you might want to think about adding it to the list.

Lastly, while it appears that only NYU has a Tesla 7 machine available for clinical use (the rest are all in departmental labs) the University of Illinois at Chicago has been apparently testing a 9.4 machine for a couple of years, that is supposedly going to be able to image brain metabolism at the cellular level. And while there doesn't appear to be independent verification readily avilable for all of the information posted on this site, it makes the thing sound like quite a toy: http://thefutureofthings.com/pod/113...ngest-mri.html

Mike

Ive ben fighting this disease for only 8 months,,but beings that mine started as a result of nerve damage[causagia] thats why its spread like wild fire,,,ive had 4 dr;s think and talk me into saying i have MS,,ive had every test done to rule it out and autoimmune diseases too,[MRI,,CAT scan..blood work Bone scans,,} its terrible,,,i feel for you all,,my God in whom i trust heal us all,,,,,thats another reason why they channged the name from rsd,,to crps[complex],,,,,,,,,,,,,,,,,much love and hope,,,Bobber,,

Dubious -

On further review, I'm not sure some of the press releases about the Tesla 9.4's ("resolving individual cells") are worth their hype. In fact, I'm relieved that I didn't site them as gospel.

Turns out the the voxol (the resolvable element of the 2-D slice being imaged) for a 9.4 Telsa is 0.2mm x 0.3mm x 0.2mm or (0.2 cubic mm) ["A Computational Atlas of the Human Hippocampus from Postmortem 9.4T MRI," PA Yushkevich et al at p. 7] http://picsl.upenn.edu/caph08/papers/slides15.pdf while that of the 1.5 Tesla is approximately 3 cubic mm ["The Basics of MRI," JP Hornak, Chapter 1 (INTRODUCTION) - Tomographic Imaging] http://www.cis.rit.edu/htbooks/mri/inside.htm, differing only by a power of 15 of so.

And a power of 15 is of course nothing to sneeze at. In fact, if you open "A Computational Atlas of the Human Hippocampus from Postmortem 9.4T MRI," which came out of Penn's Department of Radiology last year - basically slides for a PowerPoint presentation - you can see comparisons between images taken with the Tesla T1 and two versions of the T2 on page 3, with another from the 9.4 on page 7. And while the 9.4 is clearly a great improvement, cellular it isn't. That said, just as there were significant differences between two versions of the T1, there may be with the 9.4 as well. But all of this is well above my (former) pay-grade.

Mike

HOT or Cold?
 

Do you and your sister respond the same way to WARM and COLD? or is it opposite?

Thanks
MRPETE

I'm NOT trying to steal the thread, but since I posted (above, previously) in this thread, and it's on the same line, I figured I'd continue here.. Hope that's OK.

I did finally see Dr Knobler (Pronounced without the 'K').

And, had the office, himself and his wife to myself, for private conversation about my situation.
He is such a wonderful, smart neuro! He and his wife have three sons, and they're such a great family! If half the families in this country could be like these folks, we'd be a FAR better country!

After much discussion, and him listening, he didn't say anything about it, or even add any new meds, (I''m sure he realized how "delicate" I am right now, and didn't want to upset me further) but added to my slip of dx's , Something called "Epilepsy, Traumatic", with a diagnoses # that I can't quite read.

I don't really know what this is, but I apparently have it.
It's headaches when I try to think, and "scrambling" of info when I try to think. This happened to me in court, under questioning, I just "bugged out".

So, he will write something for me, if my attorney, if I find one, will need it.

Does anyone here have this, or know about it, I suppose I might need to go back to the TBI section, or another.

I just wanted to let all you wonderful, supportive and loving folks know what happened.

Thank you all, for you kind and loving support!

:)

love,
Pete
asb

http://i37.tinypic.com/dgng1v.jpg

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

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

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!!:D

Dear Cindy, I am so happy I posted this for you too.
 

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

I have these too
 

:confused:[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

Ladybut Ill be in touch. ill pm you.
 

[QUOTE=Ladybug10435;568139]:confused:Ladybug, pm me your email, Ok. look forward to talking with you, cz

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

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 :D I can not tell you how much peace you have given me!!!

May God Bless you with Peace and Pain free sleep

Renee' :grouphug:

I also had a seizure
 

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!

The balance problems and the falls are terrible. Those started for me this year after the RSD spread and when I was having hallucinations and acting all weird on top of the balance problems and the falls that was literally a living hell. I was told by the doctors that I could not be left home alone so my mom came to live with us for a while (that was a whole other sort of hell...lol). I've never had the seizure type thing in conjuction with the falls...but I do know how scary it is to not be in control of yourself. My boyfriend tells me some of the crazy things that I was doing and I have NO memory of them at all.

I still have problems with the balance...takes a lot of concentration to make my feet go where I want them to go. I won't leave the house without my 4 wheel walker...definitely would be far too risky. Even with the walker I sometimes can't control what my feet are doing (especially if the pain starts to get up to that 9-10 level)...but at least I feel less likely to fall and can just sit down on the seat if I don't feel right.

So sorry for everyone who has to deal with these things. It's good to know that I am not alone because when this all first started happening I didn't know if it was the RSD that was causing it because all the doctors were telling me it is not a symptom of RSD...but at the same time I wish that no one had to suffer with these things.

Dear, CZZ74 I have the same systoms you are experiencing and I can;t get any help for my brain shudders.I there any medicaton you are taking?

I am hitting 11 years diagnosed with type ll CRPS, I have been searching for answers myself due to the fact I don't have support with the medical field. It makes me sad and angry. Anyway, I just recently researched Gabapentin and finally talked my Pain Specialist to try me on. I was on LevorDorman for the pass 4 years but due to the copay $1,000 is a month I had to drop cold turkey, not easy and really hard but that actually did make a difference. Now with this new doctor I was thrown at 2 years now he pushes Methadone, which I have been on too for the pass 6 years but he has me on 9 doses a day at 10 mg. I feel like the Gabapentin (not the greatest as the levordorman) but hey it's a start. Now I suffer brain shudders as well since I received 2 Stellate Ganglion blocks. I left unable to speak for 3months and now I have brain shudders unannounced. I can't walk, talk, function. I am bed ridden until they wear off but my loss of speech is the side effect that can last days to months. My thoughts are with you. I hope the Gabapentin help you!