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Help pls! Scary ER night--Is this an OI thing??

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by HTree, Jul 17, 2011.

  1. HTree

    HTree

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    Hi all,
    had an unpleasant night at the ER when i somewhat suddenly (after short walk) sat, and really just couldn't get up. Was so very very lightheaded--and so extraordinarily weak...Sat in the middle of a crowd and thought -- should i just wait this out, or is it time to call 911? (you know that conundrum...decision which has to be made of course when super light headed and difficult to focus. oye. I'm sure many of you have been there before!) since sitting was not ameliorating the escalating situation, got ride to hospital, course they couldn't figure out what was up, but zonked out for 5 hrs there seemed to help somewhat.

    Something extra has been up the last 4 days-- no viral anything--but I think perhaps triggered by, of all things, not using ambien. That's the only trigger i can think of...(i've the lowest dose of ambien off and on, and recently more so...then stopped this week.)
    That (or god knows what else) triggered some neurological symptoms Thatwhich I've never had-- like the feeling of body being distant from brain (like poor signaling...as if, when scratching my arm, the sensations just seem sort of far away, or maybe just dulled). Very unpleasant. I was told this is a "dissociative phenomenon"--which can be triggered by many things). So that in addition to Extreme light headedness.
    Presently I really can't walk much at all outside the house...(which has happened to me, but only when with "extra" infection).

    Well there's much more to this particular episode, but of course too exhausted and unfocused to get into details...! so I will just ask the questions, because i do wonder if this is heart related, or other OI:

    --) is a make-shift tilt-table test-- as in, lie down for x minutes, then stand up directly for x minutes (while nurse checks pulse)-- Is this enough to exclude OI?

    I had that test done at a check up this year--essentially it's a less sophisticated tilt table I think... My heart rate was fine in that scenario.

    For me it's hard to tell the difference between a post-exertional malaise type deal (all over body suddenly ughhhh after 20-40 minute walk presently)--
    VS., this particular thing (this week) feels much more "brain" focused-- just extremely light headed and maybe heavy-bodied, and I do feel better lying down.
    Qs:
    -->So I think my PCP ruled out POTS based on the simple test above-- but is that sufficient?
    -->Is the other variety of OI (NMH?)--does that only happen after a bit of exercise?

    --> Can anyone from New England recommend where to go to test the heart? and/or ANS tests in general?

    Can't help but be concerned this is something more serious. Of course, of course, would love some explanation.
    While on that note: --> anybody else triggered by a mere stopping of ambien? (i was on lowest dose.. just 5mg)

    Thanks all!! and pls forgive the ramble--4am here, but thought worth a shot to see if any opinions..

    Here's to a world free of light-heads...!

    Htree
  2. xchocoholic

    xchocoholic Senior Member

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    Hi there. I'm not a doctor but this sounds like a seizure to me. I used to do this all the time but it stopped after getting the gluten, casein, etc out of my diet. I suspect it was just gluten causing this but since I don't have a gluten meter on my forehead, I can't say for sure. :D

    A poor man's tilt table test like you described can diagnose OI, but I've found that sometimes my BP drops slower than other times ... Try testing this a few times.

    I have OI but will recover from an OI episode within a hour of laying down. That's why I'm thinking seizure.

    Of course, it could've been that your body was just depleted of something that took 5 hours to replenish. Did they give you a saline IV ?

    I'd get a GTT + insulin and get tested for food antibodies and nutritional deficiencies. An integrative, holistic or functional doctor can help you with this.

    tc ... x

    PS. I've never taken ambien but withdrawals from other meds caused a similiar reaction in me once. I was taken to the ER too ... not fun ...
  3. soxfan

    soxfan Senior Member

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    I have quit ambien before and it was a nightmare. I had been on it for about 2 years and when I went off I did taper. I felt so strange and odd and just plain terrible for a week or two. I finally had to go on Lunesta because I was never able to sleep or fall asleep. You can look up ambien withdrawl symptoms and there are alot of them listed.
  4. firefly

    firefly

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    Hi HTree,
    For a full autnomic assessment (including tilt-table testing) you could see Dr. Roy Freeman at Beth Israel Deaconess Medical Center.
    He should be able to investigate other neurological issues too. I saw their office a few years ago and they were very thorough.
    Good luck.
    Let us know how it goes.
  5. sleepy237

    sleepy237 Senior Member

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    A doctor took my sitting and standing bp but i never had a significant drop and was told i couldnt have a tilt table test. That was last year this year a cardio ordered one and I would say that if you are having it taken by any other means than a tilt, make sure you get your bp taken standing repeated not just one time. This is neurally mediated so doesnt always happen so I am sorry to say that the test you had was not sufficient to rule out. If you have POTS you could take your bp and hr yourself the heart rate will always be above 30bpm standing. If it is an OI issue it can be more variable. I can relate to yur neurological symptoms and have been told the same cause but it is complex. Try see a neuro if you can. Best wishes. Sleepy
  6. ahimsa

    ahimsa Senior Member

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    Here's a link to a document from Johns Hopkins, the doctors who first discovered the link between Orthostatic Intolerance and and ME/CFS, that might help to answer some of your questions:

    http://www.cfids.org/webinar/cfsinfo2010.pdf (PDF file)

    Here's the section that talks about how to diagnose NMH (Neurally Mediated Hypotension) and POTS (Postural Tachycardia Syndrome):

    Some folks have very clear cut symptoms (when I read a list of symptoms back in 1995 I wondered how it could match so exactly) while others are not as clear. So that makes it really hard to say whether your problems are due to orthostatic intolerance or not.

    I can share my own experience, however, as someone who has been diagnosed with NMH. My symptoms are made worse by standing and heat. That makes showers very bad (I now take cool showers and use a seat in the shower). My symptoms are also worse after eating (resting with my feet up for at least an hour after I eat is helpful).
    My NMH symptoms are not always worse during "exercise" (and in my case "exercise" really means daily activities like just getting dressed or a short walk on level ground). However, trying to stand still right after "exercise" is much harder than than trying to still after I have been sitting and resting with my feet up. Moving around is always easier than standing still but that only works up to a point. At some point even moving around gets too hard and I must sit down or lie down.

    I can't help with your questions about Ambien because I've never taken that drug. I hope someone else can give information on that (someone probably already has answered because it's taking me so long to type this message, LOL!)

    I hope this helps a little bit and that you are able to figure out what is causing your problems! At the risk of giving too much info here are a couple more links that are helpful:

    http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

    http://emedicine.medscape.com/article/902155-overview
  7. Andrew

    Andrew Senior Member

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    First, I think you did the right thing by going to the ER. What you experienced was out of the ordinary for you, and scary to boot. And FWIW, I once blanked out briefly. Then felt like I could hardly stand. I called my doctor. He told me to go to the ER. They found nothing.

    FWIW, my tilt table was normal. I also had a test where they blow cold air in your ear and test something or other. Has to do with balance with ear. That was normal. Most other tests were normal. But you really need to request copies of your tests sent to your home. Sometimes they say they are normal, when actually there is a note in them about a possible problem.

    BTW, I don't think a blood pressure test is always revealing. David Bell did some research where he found that BP shows nothing, but a Chromium 51 blood volume test does show something. These are not easy tests to get hold of, and I have not bothers. Suppose they did confirm low blood volume in me. It gives me no advantage to know. I can try the remedies for this and simply see if they work.
  8. HTree

    HTree

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    Thank you all!
    I've been resting. Not moving. I do feel mostly fine lying down (i mean, "Fine" as in somewhat my "normal)--so I do think was spurred by being out and the bits of walking. And the ambien, i think did trigger the dissociative feeling. But now I still have the INTENSE light-headeness (actually, a more accurate term would be "heavy" headedness. Feels like being under the sea--lots of PSI on top of me---Doesn't that smack of lack of blood to brain?

    Firefly-- Ah, excellent, thank you for new england MD advice!

    All I'wondering: I am supposed to fly out to the west coast in 3 weeks to see Dr. Montoya (stanford)-- ( quite a journey for my bod these days-- so hope this ameliorates somewhat before that)
    I was told by Nancy Klimas (Miami)--or her secretary (on the phone)--that a full heart/tilt test is done in a particular way at her clinic. I have not yet seen any of these "specialists" (for ME/CFS)--so my goal this year is to see both Montoya and Klimas. I am wondering if Dr. Freeman--does he know about ME/CFS? As in: wonder if I should do the Orthostatic Intolerance and, heart stuff, when I see Klimas? (though costs a bundle).
    (Hmm I'm not being clear, once again it's 4am!) Basically: Wonder if seeing Freeman in ADDITION to Klimas (if I ever get there) is useful--- as supposedly ME/CFS folks may do the OI tests somewhat differently? (though Freeman maybe covered by insurance?)

    Thanks thanks again all. I think maybe a lesson learned here is--any minutia of changes can trigger cascade of things in my bod. Sort of suspected --but ambien seems so harmless--still I do think now that was the "precursor" to what's been going on for days....

    On another note: You know all, I do hope some of the assistants or the MDs themselves read some of these posts on PR. Obviously we are subjective and things vary so much between individuals, but there's just a wealth of info here. Pretty smart folks here for having CNS crap. One just has to learn to adjust to the "brain fog language". :)
    (hmm...ha, reminds me, I have taken to mentioning to new docs that I went to an ivy league school--you know, just so it's clear "really i'm intelligent it's just the exhaustion causing 5-yr old speech., i swear!" Oye. used to avoid such pretentiousness like the plague--my how things change...
  9. HTree

    HTree

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    good point Andrew re: advantage to know or not. Honestly part of me just wants to know HOW THE HECK Things work, you know? Less stressful having an idea of what's going on. May be worth knowing just for that point, for me. But yes also, aside for electrolytes, i want to learn what the remedies are....
  10. Tulip

    Tulip Guest

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    Hi HTree,

    I pass out a lot, but even more when I get a virus. I currently have the dissociative feeling that you speak of after passing out last week and hitting my head on a concrete step (not fun!!). It feels really really weird as i'm sure you know, your body feels like it belongs to someone else. I think a combo of a virus and low bp can cause this to happen and the passing out...

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