describing symptom?

[CB1122]

I'm having difficulty explaining this symptom I am having lately... wondering if anyone has anything similar and how you would describe it...

So I suddenly have this feeling like I am going to just go to sleep... not that I am sleepy... like I am just going to go out... and not a black out... more like a white out. My whole body feels tingly and kinda weak. Sometimes my legs just drop and I fall...

I try to lay down and close my eyes... but I am not sleepy so I don't go to sleep... it just feels like I'm going to pass out I guess, but not black out - vision does not do the tunnel thing

Anyone else relate? What do you call this?

Oh and I also have developed blurry eyes.... I thought my eyes were just going bad, but I have been very observant of when my eyes seem more blurry and I try to read things far away to measure myself. I haven't gotten my eyes checked yet - but am planning to. Is this a sign of where my neurological probs could be coming from...

[LisaM46]

Weird... I wrote a comment and it disappeared!  I probably hit "back to forum" instead of post!  What a spaz.

For my MVP, I had an EKG, but they also did an ultrasound to check for the regurg.  They made me do a treadmill stress test before they would clear me for my surgery.

I don't think I've had a drop attack.  At least not as an adult (I remember two odd incidents as a child, but that's it.)

Lisa

[CB1122]

hmm... what test do you get for MVP?  electrocardiogram?  I am supposed to be scheduling that... as well as Tilt Table Test...

I think lately its soo difficult to explain to the dr whats going on b/c my symptoms are changing all the time

And how do you cope with drop attacks? I am a new mom to a 1 yr old, I babysit 2 older boys, and coach volleyball. My husband is working on his PhD so I have to drive... I miss work a lot, but I don't know what I am going to do if this keeps getting worse... we need my income right now

[LisaM46]

Hi Lori,

I have mitral valve prolapse too.  I do not have any regurgitation with mine though.  Do you know if you have regurge with yours?  This would make you more dizzy & give other symptoms also.  

Lisa

[selmaS]

Hi Lori!!

May I ask do u have Ehlers-Danlos that u have the mitral valve prolapse.?????

[laratterman]

I have always referred to this "spells" as a "grey-out".  My vision seems to dim, but I don't pass out.  Then, I have to catch myself to try and keep from going down.  I have had full blown black outs, but these are different.  I am usually somewhat dizzy along with them, so it's as if my vision fades a bit.  Sometimes I can stop myself from going down and sometimes I can't.  It happens more often when I am very stressed or very tired.  

I also have a prolapsed mitral valve... don't know if others who experience this have this too...???  I know that typically, I have tachycardia along with these episodes, as you can feel your heart "fluttering".  I have been told that what I'm experiencing is called "syncope".  I guess it could be the same thing or a combination of increased heart rate and drop in CSF flow...??  Of course, now I'm hearing that the PMV could be a result of the CM1.  ???  I truly don't feel confident that anyone is 100% sure.  How sad is that?

Why can't just ONE of the neurosurgeons who treat this also experience it first hand so they can report to the group as a whole...???  

I hope this helps some.

Blessings!

Lori

[n40066]

the only way to stop/prevent the attacks is to have the surgery and, like selma said, restore the natual flow of csf.  it is unfortunate that this is the only alternative, but so far, that's our one great hope!
elizabeth

[selmaS]

Drop attacks happen when the CSF flow stops....it works like a light switch....when shut off(blocked) u fall bcuz the signals from the brain r not getting thru....so u can not stand, walk, talk, function.

This is y we get the decompression surgery...to make room, so the CSF flow can move unobstructed. Many times it can be the position of ur head, or neck that actually causes the blockage to occur.....so , if u notice a certain position of ur head or neck brings about this issue u may want to avoid it...but u may tend to look a bit stiff....and it may not be as easy as all that either.....

Do talk to ur dr about these issues.....he will be able to give u the best course of action.

"selma"

[CB1122]

thanks everyone for the feedback... I know its said all the time - but sooo good to hear I'm not alone!

I am actually going to ask for a sleep study because I think narcolepsy is a possibility after reading about it... and I'm interested in the drop attacks too... is there any way to stop these things? or prevent them?

[niki3350]

Im so glad that this has been posted I have been very scared recently by episodes that have been happening to me that are very very similar and was struggling with a description myself. here goes.

My mind goes all foggy, no where I am but cant relate, then my body starts to shake from head to toe, then my legs I describe as if my skeleton cannot hold my weight and they start to buckle.  I then no I have to lie down on the nearest surface and as soon as I do I sleep for hours usually about 3! then wake up fine again!!!

I was unsure if it was fatigue!!! or some sort of fit!!! or something totaly different, in the past 2 weeks this has happened 3 times.

Can anybody suggest what it could be for me.

Oh yes im blessed NOT with the blurry vision happens frequently to me I try to describe it as looking through vaseline, but can totally relate to the net curtain description, I also get extreme pain im my right eye, it burns almost and feels as if somebody is thrusting a hot knife into my eye and turning it around.

Niki x xx

[lu7997]

The vision sounds familiar.   I finally described it to my husband in a way he understood. You day blurry and people think u need glasses.

I say it is like looking through a loose dirty screen. You can see through it but just when you focus the wind blows and you suddenly have to readjust to the new bends in the screen.  I actually took the door screen and showed him.  I think he got how you can see but it is a constant battle to refocus and if things move in that time it takes even longer to see it


The "white outs " sound like what I was struggling with for awhile.  I called it awake narcalepsy.  I would just fall like my body fell asleep even though I was awake.   I think u described that very well.  I eventually told the doc that it was as if someone shut off the rest of my body and left on my brain. Things would slow down but I was aware of everything just couldn't react.


Not sure if any of this helps.  I live for analogies. I have to find a way to make people see in terms that they can physically compare.  

[n40066]

sounds like a drop attack to me too, cb.  and ditto on the blurry vision.  yet every time i go for my check ups, they tell me my vision is 20-20..go figure.
make sure you let your dr. know about this latest development...
elizabeth

[selmaS]

Hi...I am not sure if it is the same as a drop attack or not, but sounds similar to one.
A drop attack when I had one, I did not feel the  falling asleep aspect u describe....mine was I am  standing here on moment and the next I am headed for the ground....I was aware, but could not respond to make a sound nor to block the fall....I knew I was falling but had no idea y.

U may be experiencing something quite similar....I do know that we do not experience these things all the same nor do we all have the same symptoms...

It also seems we all tend to get this blurry vision,.....do have ur eyes checked to be sure it is nothing else and to make sure that it is not a sign that something more serious may be  going on as a result.

"selma"