Seizures And Dysautonomia

[tinkerbella]

The New Doctor thinks I'm having seizures. So you know how we research everything. Really wanted to watch a TV series today ~

Autonomic Symptoms

http://www.ehow.com/info_8085525_seizure-activity-symptoms.html

Interesting what they say about them , even if it's just a little blurb.

BellaMia ~

[hilbiligrl]

Hey bella!

I've not been tested yet.... but i suspect and so did vanderbilt, that I could be having seizures. Hopefully i'll be tested i the upcoming weeks/mths to see if i do. I have 'attacks' that seem to be only described as seizures..... I know that doesnt help, but it is highly suspected for me......

hugs!!!!

tennille

[tinkerbella]

YOU'RE a sweet heart ~ I hope you get a good doc and find out answers you are l@@king for also. I love your posts here also. Now pack your bags and move up here. LOL!!!! I need more local potsie friends. What are your seizures like, do you remember?

BellaMia ~

[hilbiligrl]

Bella!

Well, im quiet partial to east tennessee, what state are you in??

My 'seizures' go like this: they come on almost suddenly, and when it hits, i literally fall into a paralyzed state from head to toe.... i have to lay in one certain posistion, usually on my left side.....i cant move, speak, communicate...nothing. Cant even barely open my eyes.....cant barely breath (as if my diaphram no long works or is too weak to work or not getting proper signal to work as it should).... not only am i paralyzed from head to toe for hours and sometimes days, or in and out of that state for months, but I also get a feeling of 'death' and 'utter, sheer suffering of some type of sick feeling that i seem to be able to feel in the very cells and tissues of my body inside and out. I also feel pass outish, as if im going to black out at any moment. I never get scared, never.... but these attacks, oh my.... talking about sheer terror and horrific. Usually the tears are flowing and i am mentally aware of everything, but it's as if im a prisoner in a shell of a body with no way of communicating....... i can get numbing, tingling, burning yet icy feeling in my arms and hands..... sometimes my hands draw in..... sometimes i shake uncontrollably.

The thing is.... my doc says get to the er so we can check to see if it is seizures....... but im scared and have been made fun of by emt's and nurses and docs.... and i get this everytime 'get up, we need you to sit up and talk to us!'... that's what docs and nurses say when i go..... well, if i could get up and talk and hold my head up THEN I WOULDNT BE IN HERE WOULD I?????? I have been treated so horrible by emts, docs and nurses for so long, that i just am too scared to go to the er anymore...... the last time i went, a male nurse kept getting mad at me because i couldnt move or communicate, so he started yelling...... if i wasnt stuck in a paralyzed and an unreal exhaustive state, i woulda sat up like he asked and punched him in the face for being so cold and rash......

I had another bad 'attack' last week.... maybe 3 actually.... but still yet, im too scared to go to the er cuz i get treated very badly every time i go.

lol, i wrote a novel..... sorry bout that

tennille

[tinkerbella]

Great novel.. That is horrible, but I kind of know what you mean. They say the same thing to me press my lifeline button around my neck. I don't even know it is there! Those sound very scarey, they sound a little like when I go into sleep paralysis only I can't move at all I try to talk. I think I've be abducted by aliens or someone is in the room holding me down. Do you ever have that happen to you? Do you wake and have one side of your tongue bitten or sore? My tongue hurts so bad this today. I read that is a good way to know that you are having seizure activity. I live in the Boston, MA area. I have headaches and will feel irritable, forgot things, laugh at things that are not funny, feel like my head is in a double brain fog after and will be sore where I hit my head.. My visiting nurse caught on and said that is what happens after a seizure. Must be the dead brain cells acting inappropriately. You should copy that and take it to the doctors when you go next time. Have you had any studies done? And if not, how come????? I dislike ER's so much ~

BellaMia ~

[hilbiligrl]

Well, my old doc of 8 years.... she just wouldnt do anything anymore.... ive had mri's, cat scans, bloodwork, this and that over and over and always nothing shows up. I finally fired her in nov.... and submitted my case to a rare case doc on our area and he finally accepted me in late dec.... started seeing him in jan.... we havent yet done any more tests, except for vanderbilt, who done 2 autonomic tests poorly in my humble opinion. Mostly my doc and i figure one thing at a time, cuz for one, hubby had open heart surgery in feb and well, he's in late stages of heart failure, so these past 5 months have been **** on earth with so many doc appts for me and him and all the stress.

I do copy stuff on here and take to my doc and he always looks into it and we discuss everything.... he's really good and it seems he believes in me and i believe in him...... he's an integrative doc.... i really like him and although things are going slowly, he listens and i can see it in his eyes that he really wants to 'fix me'.

In the upcoming months we will be getting into some tests and work ups, mostly from what i find out on here and a few of his own suggestions too. I think my new doc wanted to 'get to know me' before he started some mega testing going on... so, im just patiently waiting and trying new meds to see what works and what doesnt. But yea, hopefully we can start a battery of tests soon!!! Does that make sense??? As my brain fog is horrible too.... ugh, dont you just hate that?? Last week i couldnt speak words and sentences.... it was aweful trying to talk to anyone!!!! lol....

Oh, and the sense of humor... oh my, i live solely on humor and laughter and sarcasm!!! That's my best medicine..... or else i go to that dark place that i don't wanna be in....

tennille

[toddm1960]

Tell me again why you're partial that area......

[Friedbrain]

Wow, that sounds awful, Hillbiligrl! I've only had *one* episode like that, and it *was* scary, so I can sympathize. Can you tell what brings them on/triggers the different kinds of episodes? My first episode was like that. I wish I could remember the exact sequence, but it was 9 ys ago, on Tgiving night. I'd had a lot of pie that evening (and at the time, I was aware that I was, to some degree, sugar sensitive as I was on a low-carb diet even back then), and stayed up late after. Went to lay down in bed, things happened, one of them being I was suddenly frozen on my back, staring at the ceiling, and couldn't move. It only lasted probably 30 seconds, though. (after that, the same night, my eye started ripping into the back of my head in 30 sec spasms, and I ended up having to go to the ER because it was so painful I was screaming).

BellaMia, I do have a seizure disorder of unknown origin. After that first ER episode, and status epilepticus a month later (both right before my periods), along with MS symptoms (because I had both central and peripheral symptoms, they suspected MS as their only idea).....they finally consulted with Mayo, who said they would see me but didn't think there was anything else they could do for me that my neuros hadn't tried (because, in two short months, they'd done a LOT of testing, with no obvious answers). Initially (ie pre-medication) I had grand mal seizures (unconscious); medicated, I had what I called "breakthrough seizures" that I think of (correctly or incorrectly; doctors never said I was wrong) less severe seizures of the same origin/type. They used to always happen during the night, before my period. One time I was describing them to my mom, and she burst out with "OMG, they sound just like my panic attacks!". (needless to say, she was recently put on anti-seizure meds with much better control) But when I started thinking about that in terms of my experiences, I am positive that I am not experiencing an uncontrolled fear, like panic; rather, they are autonomic in nature. I wake up (in the middle of the night usually) with my heart racing, and then nausea and head pressure build, build, build, I feel a flash of heat that spreads, then I start shaking all over. The fear that I experience is based on the fact that I cannot stop them, and I know where it's going to go. When I got to the point of acceptance, I could sit through them without fear, but it is not pleasant, nonetheless! I used to take xanax to stop them, but in the past year, my heart felt Too Slow and I was afraid I would slip into death (enough that I made dh stay awake for a while to make sure I didn't stop breathing!)

Sometimes if I don't tip over, I DO have to go to the bathroom (diahrrea, sorry for TMI), tho, too, another suggestion that ANS may be involved. After reading suggestions here, I have found that ways to reduce the likelihood of tipping into the body shaking: I use hand pumps and pump until my heart is beating fast naturally and then let it slow down. I sit up in bed or in a chair when I'm feeling ready to spike; for some reason, laying down makes my heart race and increases the likelihood of it starting up again.

I wish I knew what caused them. The dizzy/shaking episodes have become more frequent in the past year, and now interrupt my daytime. If you have any ideas what spikes seizures of an ANS nature, I'd be interested in hearing! I know that I can't have the epi shot at the dentist because that almost set off a seizure......

[tinkerbella]

tennille,

I just said a prayer for both you and your hubby. I'm so blessed to have found you here, someone else fighting this battle with other crises going on, but we must TRUST that all will be OK. We must program our brains that the Good Lord or whom ever you believe in did not put all of us here in this group for a reason. Please, my heart goes out to you tennille. Please know you can email me anytime for support my friend.

HUGS

Bellamia ~

[hilbiligrl]

todd~ well, im a homebody by heart and i've lived in Kingsport, TN all my life. Not a big city, but not a very small town either. We all just kinda know each other here. And, well, our sole income is our small towing business ..... so, we kinda can't leave here since we've had the business for 17 years (and yes, i actually tow and work wrecks and all that stuff on my own.... i like big trucks and challenges )....

and well, i love it here, the seasons are wonderful here and there's not hardly any real crime here..... pretty safe here (knock on wood).... plus, if i get better, i wanna go back to pharmacy school (we have one here too, plus a medical school).... and the pharmacy school here is 20 min drive

friedbrain~ I have never been able to tell what triggers these attacks..... i have them often for years now. It is shear torture. It started with me delivering newspapers, catching mono (a severe case of it) and carbon monoxide poisoning from the car i drove while delivering newspapers. I was really sick, woke up one morning, got out of bed and hit the floor like a heavy brick..... that was my very first attack..... and once i got to the er, they said it was mono.... that was 8 maybe 9 years ago.....

bella~ thank you so much for your thoughts and prayers.... yes, i do believe in God; however, enduring the worst part of this illness these past 2 years has shook my faith to its entirety.... and i was someone who read the bible daily, prayed morning, night, all day long.... was raised i church and have raised my children in church.... Sometimes, i find i cannot pray, no matter how hard i try...... that is usually when im the sickest...... for a few months, i no longer believed God existed.... i could not fathom the idea of so much suffering and agony, and i could not fathom God putting me through this, or putting others through this.... this disease is unreal..... but after a few months I started seeing things differently..... im a good speaker and i speak out boldly....I would love to be an advocate for the rare disease association (or whatever they are called) and wish i could speak before med students (as my new doc is also a professor at our medical school here).

We are having it tough, as we didnt have medical insurance and hospital bills for an aorta replacement are astounding...... plus the economy is slow and has effected business greatly...... plus, hubby has some complications but still works 24/7.... when he's down, then i do the towing.... when im down, he does the towing.... it is honestly sometimes funny watching us 2 sick people helping each other and running a business. I've never endured so much..... i feel tremendous guilt as a mother of 2 who physically cannot do much for them. I am ever so immensely thankful for my parents, sister, brother and his wife who help me every day with the kids (they are 12 and 14)..... i have settled on the fact that, when i can't pray, it is the prayers of others who get me through...... Bella~ you have such a huge heart and you are indeed such a blessing..... and yes, im am so so so thankful for everyone on here.... this forum is priceless to me For 8 years i felt alone...... when i came here, I no longer felt alone anymore....

lots of love to all of y'all

tennille

Edited July 19, 2011 by corina

[pat57]

tenille,

If you were hooked up to an EEG at the time the nurse was so rude there would have been a "good" reason

for the rudeness. During an EEG they want you to get angry. I have had one and the Dr. apologized (and explained), afterward.

I have had about 5 seizing convulsive events. They look very much like seizures and are from

lack of oxygen to the brain.

good luck to you guys, mine is undercontrol with Norpace to keep my heart rate up. I have

NCS and OH not POTS.

[hilbiligrl]

Pat,

Actually no one in any er has ever done an eeg..... even when i was in the hospital in a paralyzed state for 3 days... they done everything else, but never an eeg. It wasnt until i went to vanderbilt in Feb that the specialist there brought up the fact that my attacks could very well be seizures..... It is very much on my agenda to get one done during one of my episodes...... if i can get the courage to go to back to the er during one of them

thanks Pat!!!

tennille

[Friedbrain]

Tenille,

fwiw, I haven't, either. I kinda wish they had been, as it would be nice to have that info (site of activity, etc), but in my experience, the ER purpose is to stabilize and send home. The two times I was admitted, it was because of the bigger picture of significant neurological symptomology (ie, the first time, I had a cluster of symptoms so they kept me for six days to run every test they could think of, to no avail; and for high dose solumedrol, which actually helped reduce neurological problems, although I don't think they understood why it worked; the second time, well, it was status epilepticus so they did keep me cuz I wasn't stabilized for a while, and they did four more days of testing, again to no avail). The last trip to the ER, they could stabilize me (shaking episode) with ativan, so they sent me home and told me to follow up the next week with my neuro. I wish they had done testing at the ER to figure out *right then and there* what was wrong with my system. It sure wasn't "wrong" the following week. I was upset, but I guess I understand: they don't want to overload their hospital if they can send me home. It's frustrating when symptoms come and go

[jknh9]

Hm, my "seizing" episodes are a bit different from what you all have talked about. I've never had the paralysis (my heart goes out to those of you who do!!) but I've been told I seize when I'm unconscious after passing out. It happened once when I collapsed at my university and also during my TTT. I don't have any real memory of it, but I did feel a little twitchy during the pre-syncope feeling. I also have attacks, often in the middle of the night, of tachy and nausea feeling accompanied by uncontrollable shaking, like a crazy panic attack. Clenching and releasing my muscles seems to help a bit, but it can last for hours.

EDIT: For reference, I have NCS/NMS and POTS.

[gertie]

I have temporal lobe seizures but so far only partial. I start getting a strange feeling like I'm walking into a dream, a familiar place, a place I want to go but am not completely there. The dr called it dejavu. It's hard to explain. I still hear everyone talking & carry on a conversation with them if necessary. I always have a headache after.

[Friedbrain]

jknh9,

Mine are mostly like what you describe. Only my first episode was freezing. Unmedicated (and wrongly medicated), my seizures happened in my sleep, and I was unconscious during them. On anti-seizure drugs, "breakthroughs" are more autonomic-like. They used to only happen at night, but each time I go through a serious bout of stress, my symptoms change and increase, such that know the dizziness and shaking are sometimes happening in the daytime. Anyway, didn't want you to feel alone in this.

I wish I could find the link someone had shared to a youtube video of someone experiencing the all-over body shakes.

Hm, my "seizing" episodes are a bit different from what you all have talked about. I've never had the paralysis (my heart goes out to those of you who do!!) but I've been told I seize when I'm unconscious after passing out. It happened once when I collapsed at my university and also during my TTT. I don't have any real memory of it, but I did feel a little twitchy during the pre-syncope feeling. I also have attacks, often in the middle of the night, of tachy and nausea feeling accompanied by uncontrollable shaking, like a crazy panic attack. Clenching and releasing my muscles seems to help a bit, but it can last for hours.

EDIT: For reference, I have NCS/NMS and POTS.