seeing a nero doc

[Rita]

Hi everyone!!! Just wanted to ask a few questions maybe you guys can help! I have been to see a nero doc at vanderbilt today and he was really nice he is not part of the research department, but because I was having some much trouble with the vertigo/syncope my doc got me in to see him. After spending a week and a half in the bed taking my regular meds along with valum and steroids I am doing better. Oh I almost for got I also had to have a visit to the er and get fluids and some sort of drug to stop vertigo before my week and a half in bed.

On another note what I am wondering is if anyone else ever experience shaking with their syncope events, and what this is from????? The nero doc wants to do a 24 hr eeg along with a sleep deprived eeg. I am not sure if he will actually find anything , however he feels that unless the eeg shows any avtivity I am on the right schedule of diagnosing my condition. I really don't see a week and a half in bed right on schedule.

I do get to back in the research department in September though so I am really happy about this. YIPPPEEEEEE!!!!!!!!!!!!!!! It's just the wait I am afraid of...

Any advice is really appreciated!!!!!!!!!!!!!!!!!

Thanks for any help,

Rita S

[Sunfish]

hi rita-

sorry to hear that you've been having such a rough time of it, but good to hear that your doc was able to get you into the neuro at vandy & that you liked him. (sounds like we may have been hanging out in bed at the same time as i had a big crash after traveling to find a new apartment in cleveland).

as far as the shaking goes, i definitely have this at times when i pass out. to the degree that people often think i am having a seizure. this didn't happen to me when i first started fainting & was diagnosed years ago but rather several years later in the midst of a flare. docs at a major hospital were positive i was having grand mal seizures but my EEGs were always okay afterward. i was even started on meds for epilepsy - incorrectly, mind you, which made things worse - and was admitted to a monitoring unit for 5 days or so which was essentially what you're talking about with the 24 hr EEG and then some. it included a sleep deprived period as well. it was not a good experience for me b/c the doc refused to acknowledge and/or consult that what was going on could be (and was) related to my autonomic problems and thus, when the tests didn't show anything, wrote me off as being nuts. the tests themselves weren't anything bothersome though. once i got back with my autonomic doc he thought the whole ordeal was ridiculous and could hardly believe that they refused to acknowledge my autonomic diagnosis. once we played with treatment for that things started to improve (that was several years ago). and that's the short version:-)

i think there are a few on the board that actually do have "true" seizures, but myself & several others have episodes connected with our fainting that can look like seizures but aren't. the difference is that they are cardiac-initiated rather than neurologically-initiated. in a genuine seizure the problem starts in the brain/nervous system. in what i have, the problem is that enough blood isn't getting to the brain & this then causes the seizure type activity. it's not any less real but just has a different cause & isn't technically a seizure in terms of a medical definition but rather something a bit different.

there are types of seizures & fainting that aren't distinguishable by the naked eye though so it's something many on the board have had checked out. i'm surprised you haven't gotten more responses....

in terms of the research at vandy, are you going back for the OI study? let me know when you'll be there so i can send you some mail!!

hang in there,

:-)melissa

[DancingLight]

hey rita!

i'm a 'shaker'...it's awful. i don't pass out, but instead i get these uncontrollable shakes. i can shake for hours and hours and hours. i think it is my body's way of keeping me conscious, keeping me from going into shock, etc. but i don't know...

i just know that even the nurses in the OR and also the paramedics in the ambulance noticed this reaction in me and were like, um, is this typical for you???? it was kind of funny actually...but i do hate them!

sorry i'm not more help, but i wanted you to know there are several 'shakers' on this board!

emily

[dizzygirl]

hey there rita...

I have had a sleep deprived EEg..it painless really.. they hook you up to about 27-35 wires/leads to your head, and a few on your chest to monitor cadriac.. and depending on where you have it on they may put a few leads on your chin and upper lip, as well as around your eyes.

I have aproblem to with the shakes.. i typically will get them before, during and after a passout spell. sometimes i get them when i feel syncopal.. or have tachycardia.. where my whole body just feels like it is shaking from the inside out.. that can last for several hours...

my doc said that i have seizure like symptoms, but not actuall seizures... that it is my body'a way of reacting to the stress or distress thtat it is under with.. syncope and tachycardia..

i wish you luck with your eeg's and hope that all is well

good luck

dizzygirl

[dream02]

Hi,

This falls right into what I'm dealing with right now.  I'm having episodes that are called seizures but a clean eeg.  These are different from passing out due to low bp...with these my bp is fine but hr is elevated.  Now the docs think all my problems are due to the cysts on my spine.  Who know...we'll see.  I do have the shakes with low bp as well.  Good luck to you.

Denise

hi rita-

sorry to hear that you've been having such a rough time of it, but good to hear that your doc was able to get you into the neuro at vandy & that you liked him.  (sounds like we may have been hanging out in bed at the same time as i had a big crash after traveling to find a new apartment in cleveland).

as far as the shaking goes, i definitely have this at times when i pass out.  to the degree that people often think i am having a seizure.  this didn't happen to me when i first started fainting & was diagnosed years ago but rather several years later in the midst of a flare.  docs at a major hospital were positive i was having grand mal seizures but my EEGs were always okay afterward.  i was even started on meds for epilepsy - incorrectly, mind you, which made things worse - and was admitted to a monitoring unit for 5 days or so which was essentially what you're talking about with the 24 hr EEG and then some.  it included a sleep deprived period as well.  it was not a good experience for me b/c the doc refused to acknowledge and/or consult that what was going on could be (and was) related to my autonomic problems and thus, when the tests didn't show anything, wrote me off as being nuts.  the tests themselves weren't anything bothersome though.  once i got back with my autonomic doc he thought the whole ordeal was ridiculous and could hardly believe that they refused to acknowledge my autonomic diagnosis.  once we played with treatment for that things started to improve (that was several years ago).  and that's the short version:-)

i think there are a few on the board that actually do have "true" seizures, but myself & several others have episodes connected with our fainting that can look like seizures but aren't.  the difference is that they are cardiac-initiated rather than neurologically-initiated.  in a genuine seizure the problem starts in the brain/nervous system.  in what i have, the problem is that enough blood isn't getting to the brain & this then causes the seizure type activity.  it's not any less real but just has a different cause & isn't technically a seizure in terms of a medical definition but rather something a bit different.

there are types of seizures & fainting that aren't distinguishable by the naked eye though so it's something many on the board have had checked out. i'm surprised you haven't gotten more responses....

in terms of the research at vandy, are you going back for the OI study?  let me know when you'll be there so i can send you some mail!!

hang in there,

:-)melissa

<{POST_SNAPBACK}>

[Eillyre]

Hi Rita!

Glad to hear about the good news for September! I hope it will be a really enlightening visit for you.

As regards the shaking, I'm a passer-outer not a shaker. I was diagnosed with a seizure disorder (never caught on moniters, but all the epilepsy specialists I saw said they were willing to stake their careers on a diagnosis of partial-complex seizures), which resulted in a longstanding relationship with EEGs. Regular, sleep-deprived, 5-day, etc. -- I even had to trot home looking like a Queen Nefertiti-inspired horror movie monster for a 48 hour take home EEG!

I just had one done again last month to make sure I can safely stay off of the epilepsy meds, and I was very impressed that technology has certainly made them easier. My mom used to have to scrub my scalp with nail polish remover for an hour and a half afterwards and still I'd have dried chunks of glue stuck in my hair. Now the adhesive gel they use washes right out with warm water, so it's an easy, pain-free test!

That's a bit of a rambly way to wish you the best of luck with the EEG testing -- time for bed, I think! I'm happy to hear that the doctors are keeping an open mind!

Angela