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

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, 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

[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

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

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!

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

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