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