Anyone Have These Kind Of Episodes?

[mjan]

I know "Smiles" PMd me about this as she has the same experience.

What happens is this: Autonomic symptoms start..tachy..increased BP..suddenly VERY weak. I always say, " I feel like I am losing consciousness. I look like I did..no longer able to support myself..or keep eyes open..look unresponsive BUT I can HEAR everything!!! It affects my speech and cognition as I lose control over my body.

After many ER trips where they do not know what to do..but think its a stroke.. I come out of it..usually after IV fluids. Its not always dehydration. They think its maybe narcolepsy with cataplexy..but that is usually sudden loss of muscle tone..after a strong emotion...and you come back without the fatigue.

The Autonomic doc still wants my sleep disorder eval completed as he states sleep disorders are also related to autonomic dysfunction.

Anyone else?? I see the sleep disorder doc this coming week..want to tell him whats up. He does not think its narcolepsy either but another neuro did think so.

I would appreciate any responses..

Jan

[pat57]

I have experienced what I would describe like you have, but when bystanders describe the event I see that I missed a lot more then I realized. In other words I thought I heard everything, but I didn't.

good luck

[gertie]

I have done that. The first time it happened to me I hit my head on a concrete floor when I fell. I could hear my DH talking to me but it took me a few min before I could answer. I was told it was probably a seizure but testing didn't show seizure activity. I also thought it might have been low blood sugar. I have never know for sure what causes these episodes.

[Amber]

I have these episodes also and the only explanation that I can come up with is that maybe decreased blood flow in our brains can affecting the motor/muscle control areas while not being severe enough to make us actually lose consciousness. (I have no idea if this is even possible but I can't figure out any other reason for it.) When it happens to me I go competely limp. I can hear whats going on around me but can't move, see, talk etc. To others I appear to have fainted. Once a nurse was around when it happened and I could hear her tell my mother that I wasn't even breathing. Luckily it was a quick episode. Sometimes I have milder ones where just my legs give out and I have no control of them to stop from falling.....its worse when my arms go too because I can't even break my fall.

A doctor thought it might be cataplexy from narcolepsy but the tests came back negative for it. I'm sure its somehow related to POTS/low blood pressure because it happens 6 times the day I had my TTT and it's also happened when I was having blood drawn.

Its a mystery.... 8 )

[bjt22]

This is my version of "passing out/blacking out". I've done this my entire life...as long as I can remember. I used to think this happened to everyone!

[mjan]

This is my version of "passing out/blacking out". I've done this my entire life...as long as I can remember. I used to think this happened to everyone!

OK.. I get that you do understand. BUT could you tell me exactly what happens to you? And..does anything help prevent it?

I am just about to go through testing..sleep disorder for nacolepsy with cataplexy.

I just want to cut to the chase..rule OUT narcolepsy..and just LIVE with this

The RX Clonidine is helping to stop it from getting to that point..

Jan

[bjt22]

What happens to me? Oh, I'll just be going about my usual business, and things will feel as if they are fading. Vision will definitely start to go, and oftentimes, I will be unable to move as parts of me go numb. Sometimes, I end up hanging onto something until it is over. Other times, I get to the floor. Since I've done this all of my life, it really is rather difficult to explain. If, overall, I'm not doing too badly, these episodes, once they are over, are, well, over. If it's not a good day, I'll feel quite ill afterwards. I usually do this at least a few times a day. Of all the crappy things I have to live with, this is something I mind least...probably because I have always done it.

[mjan]

What happens to me? Oh, I'll just be going about my usual business, and things will feel as if they are fading. Vision will definitely start to go, and oftentimes, I will be unable to move as parts of me go numb. Sometimes, I end up hanging onto something until it is over. Other times, I get to the floor. Since I've done this all of my life, it really is rather difficult to explain. If, overall, I'm not doing too badly, these episodes, once they are over, are, well, over. If it's not a good day, I'll feel quite ill afterwards. I usually do this at least a few times a day. Of all the crappy things I have to live with, this is something I mind least...probably because I have always done it.

WOW.. and this is my worst case scenario..cuz it interupts my ability to work..and leaves me so weak and disoriented not only for hours..but days and weeks BUT I do not get them as often as you.

Do you work? Have a family and all??

Thanks for responding as this has been the mystery no one knows how to deal with.

Jan

[delphicdragon]

Yep, in that boat too, but add shaking to the mix. I can hear but my eyes won't open and I can't move my body - other than to have tremors.

It's what got me to the hospital and got me on my road to a diagnosis. Pain in the butt that when the ambulance showed up I was still in it and had 0 blood pressure - 5 minutes of jostling me about got the brain perfused again and my bp was 100/60 and I was wide awake and upset that I had to be transported to the ER.

I think they are autonomic seizures due to no perfusion. There is no seizure activity during them. I feel awful before them, but after I usually feel better (maybe it's because I'm forced to lie down.) Eating something sweet or salty can fix this - often in one bite- before I go into these seizures, but I have to catch it quickly.

Since so many of us have this, I'm wondering if it should be added to the symptom list.

Sara

[mjan]

WOW Sara.. yes thats it exactly. I have had the seizure like episodes. ANd an EEG revealed an abnormality but after 3 day EEG study..no seizure activity.

After an car accident..I ended up in ER. Either they gave me too much pain meds due to back injury..but all I know is that that is when these episodes and seizure like activity started. I do think I am NOT conscious for moments too..plus then I can hear. So.. I think I am awake. Am I? Maybe at times..maybe not.

I do get an aura even if I do not have the tremors. OR.. I get internal tremors..esp inside my HEAD!!!

Has to do with the sleep cycle. It only happens on the side..not when on my back.

YOU make sense to me...wish you were around in 92 when no doc would believe me. So many ER visits.. looked either like a heart attack or a stroke. Then the humiliation when they did not know what the heck is was..and made me feel stupid.

WHEW...so glad I have met you all through this forum.

Thanks..Jan

[ramakentesh]

Sounds like classic presyncope to me. Cardinal symptom of POTS, etc.

I remember once when I actually fell down from an episode of intense dizziness, loss of mental function, vision impairement and my sympathetic system going nuts, I had this song in my head playing over and over - it was very strange - like there was a part of my brain that was wasting time playing this tune to my mind, while the rest of me was fighting passing out with every bone in my body...

[mjan]

Sounds like classic presyncope to me. Cardinal symptom of POTS, etc.

I remember once when I actually fell down from an episode of intense dizziness, loss of mental function, vision impairement and my sympathetic system going nuts, I had this song in my head playing over and over - it was very strange - like there was a part of my brain that was wasting time playing this tune to my mind, while the rest of me was fighting passing out with every bone in my body...

Thanks for responding.. I always respect your answers. Do you actually PASS out?? I do not. I ALWAYS

say.. I feel like I am going to lose consciousness..get weaker..then weaker..s..l..o..w..l..y

I can tell the health professional what is going to happen before it does..but once my speech is affected then my mental processing (I cannot pass mental staus test at this time..I just stare at them stupidly) I do not believe its passing out at the time..mostly cuz I can HEAR..and feel like I am awake and alert INSIDE my body.

I am glad it comes across slowly..gives me time to get down.. not fall. I used to get or do get an aura..and then seizure like activity..cannot stop it. BUT this neuro in the ICU YELLED at me to stop.. that I was not having a seizure..and referred me to a psychiatrist.

Man.. I cannot wait until these docs are patients one day...heheheee

Jan

[bjt22]

There have been times when I've had seizure-like activity, but that is not the norm for me. I do get the "shakes" if it's been a particularly bad episode, but I have a lot of tremors, anyway...often, just from being upright. I go through periods when the "internal tremors" drive me nuts...but, they come and go.

I don't work outside the home. I haven't in years, and I realize that I never will again. I do have a family...my husband is great and my kids are all getting older. Some have even left the nest now! As I said upthread, this is just something that I live with. I guess since I've always done it, I just don't know anything else. Truly, until this really got much, much worse and I was diagnosed, I had no idea this was abnormal. The good news about it for me is that with meds, even though I have several of these episodes a day, they usually don't make me feel worse. I just pause for a minute or two,and go on about my business. I suppose, thinking about it, I slow down and that point and usually sit for while. It's amazing how one starts compensating to the point of not even giving it any thought any longer.

[mjan]

There have been times when I've had seizure-like activity, but that is not the norm for me. I do get the "shakes" if it's been a particularly bad episode, but I have a lot of tremors, anyway...often, just from being upright. I go through periods when the "internal tremors" drive me nuts...but, they come and go.

I don't work outside the home. I haven't in years, and I realize that I never will again. I do have a family...my husband is great and my kids are all getting older. Some have even left the nest now! As I said upthread, this is just something that I live with. I guess since I've always done it, I just don't know anything else. Truly, until this really got much, much worse and I was diagnosed, I had no idea this was abnormal. The good news about it for me is that with meds, even though I have several of these episodes a day, they usually don't make me feel worse. I just pause for a minute or two,and go on about my business. I suppose, thinking about it, I slow down and that point and usually sit for while. It's amazing how one starts compensating to the point of not even giving it any thought any longer.

WOW you get this every day? Dont you think there might be a med or a higher dose to help? What would happen if you are NOT on meds then? Hmm...

Jan

[bjt22]

If I'm not on meds, these episodes leave me needing to go to bed IMMEDIATELY. This wasn't always the case...it happened when the whole thing really went into high gear and I was diagnosed. I'm on several meds, and I keep my eye open for anything new that I might tolerate. It's not really something that is a big deal to me so long as I'm not sick for hours afterwards. As I said, its really about the least of my symptoms as far as I'm concerned.

[delphicdragon]

Sounds like classic presyncope to me. Cardinal symptom of POTS, etc.

I remember once when I actually fell down from an episode of intense dizziness, loss of mental function, vision impairement and my sympathetic system going nuts, I had this song in my head playing over and over - it was very strange - like there was a part of my brain that was wasting time playing this tune to my mind, while the rest of me was fighting passing out with every bone in my body...

Thanks for responding.. I always respect your answers. Do you actually PASS out?? I do not. I ALWAYS

say.. I feel like I am going to lose consciousness..get weaker..then weaker..s..l..o..w..l..y

I can tell the health professional what is going to happen before it does..but once my speech is affected then my mental processing (I cannot pass mental staus test at this time..I just stare at them stupidly) I do not believe its passing out at the time..mostly cuz I can HEAR..and feel like I am awake and alert INSIDE my body.

I am glad it comes across slowly..gives me time to get down.. not fall. I used to get or do get an aura..and then seizure like activity..cannot stop it. BUT this neuro in the ICU YELLED at me to stop.. that I was not having a seizure..and referred me to a psychiatrist.

Man.. I cannot wait until these docs are patients one day...heheheee

Jan

Very interesting and able to be related to myself and my condition on two counts.

1) Blacking out v. Passing out. I have never passed out (gotten close) but never dropped. I black out almost every time I stand up, especially if I am going from a squat to a standing position. I can "function" blacked out. I can walk around, talk, etc - I just can't SEE! I assumed this was an annoyance as it's been happening since I was 8ish and I never told a doctor about it until college. Regarding the seizure-like episodes, I can feel them coming on too. And can tell people about them. Usually just tell someone to get me food- now. I've got maybe 3-5 minutes before the shaking starts and once that happens they take a while to subside.

2)I wish I could stop the episodes. I am so happy that the first neurologist I saw regarding them didn't just write me off as a psych case. (And I am so sorry that the dr you saw was so quick to do that to you ) They had no idea what was wrong, but were relatively certain it was organic. The last test they did on me during a followup was a poor man's tilt. My heart rate shot up and I blacked out. Still talking to them, just had to "wait until my vision came back." They sent me to cardio- which was a joke, but, I digress.

Sara

[mjan]

If I'm not on meds, these episodes leave me needing to go to bed IMMEDIATELY. This wasn't always the case...it happened when the whole thing really went into high gear and I was diagnosed. I'm on several meds, and I keep my eye open for anything new that I might tolerate. It's not really something that is a big deal to me so long as I'm not sick for hours afterwards. As I said, its really about the least of my symptoms as far as I'm concerned.

OK..for you its almost everyday thing with other symptoms much harder on you. For ME..its one of the worst..usually is so bad that someone calls 911 and I leave work on a gurney...many times. NOW they listen to me..and I just need to lay down..sleep it off so to speak. I just cannot always do that.

And it affects my VISION now.. it goes in and out..I remain so spacey that eventually I cannot function and my speech goes from slurred..stammering to not able to talk at all..or keep eyes open. See why I leave on a stretcher??

BB has helped..but it doesn't always. Now that I have my Clonidine as a backup it has stopped these episodes so far..so good

I DO appreciate YOU and your responses..I learn so much from all of you

Warmly, Jan

[bjt22]

A combination of a beta blocker and Catapres(clonidine) works quite well for me.

I still have an episode that starts like this and needs me needing to lie down and possibly sleep it off every few days. I'm also very good at feeling it before it occurs and I'm probably preventing a lot of the worst ones this way. My vision has always gone in and out with these. More so now. It's one of the main reasons I don't drive.