mully2014 Posted June 5, 2012 Report Share Posted June 5, 2012 Wow!!! I thought I was the only person that ever felt this way! I am also on ritalin to raise the blood pressure for the syncoe episodes. It is amazing all of the connections there are to this condition. Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 5, 2012 Report Share Posted June 5, 2012 Oof - how to describe?! Vision is a big one. I get very blurry vision - or, maybe, not so much blurry but more generally out of focus/soft focus, nothing is sharp, and my eyes are not focused on anything in particular (sometimes my pupils are different sizes, but it doesn't seem to correlate). Sometimes when it's very bad I just look right through things without actually "seeing" them. Perspective is also a bit messy - it can look like a car is going to hit me even though I'm on the sidewalk and it's merely making a turn. I also have trouble recognizing my own body - I do not recognize my arms as mine, so when they swing into my visual field while walking I startle because they look like something potentially dangerous entering my field of view, if that makes sense? Similar problems with touch, but less severe. Hearing-wise, I tend to hear sounds somewhat incorrectly - oftentimes I hear my name being called and can't figure out who was calling it (note to self: usually nobody). Cars, again, tend to sound louder and closer than they really are, which can again be tricky to deal with. I have problems with time, distance judging, and short-term memory formation - it can be difficult to judge whether it's safe to cross at an unlit crosswalk for example (because I have trouble judging the speed/closeness of cars etc). After crossing the street I often can't figure out how I did it, or that it was done - I just don't notice the details consistently the way I used to. Definitely attention issues as well - at one point I was waiting at a street corner for many seconds because I'd forgotten whether I was going to cross or not (or, actually, forgot where I was/what I was doing), and another time I took the wrong route somewhere because I followed my usual pattern. I also have trouble navigating situations - again more of the spatial judgment - I can't figure out how to get through crowds or what path to take because I can't tell where people are going to be in a few seconds, so I often end up freezing, unsure what to do. In general I just can't predict what people/objects are going to do, so it can be very difficult to walk in a situation where there are crowds. I benefit from being guided or led by friends and family in situations like this - in several instances I was unable to function otherwise. It is related to (and I think causes) my overstimulation issues. I think, from writing this up, that the actually problematic parts of spaciness are due to this inability to judge movement and distance (the rest is frustrating but less dangerous).No real changes in smell or taste, although sometimes I don't notice the taste of food as much. Sometimes smelling particularly strong things (pot smoke while walking, strong food, floral odors) makes me a bit more in touch, actually. I haven't had anything like transcranial Doppler measurement done, and I don't know what my blood pressure is during a spacey period (though my BP on the TTT was fluctuating wildly the entire time, so probably the answer is "bad and not helping"). My suspicion is that the symptoms are caused by decreased oxygenated blood flow to the brain, but I can't prove that. If true, though, that would explain why no behavioral or cognitive tricks have helped - if you can't think, they won't do much :^) Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 5, 2012 Report Share Posted June 5, 2012 As a side note, the most helpful thing for me while walking has been being led by the hand by family and friends, and (to a lesser extent) just walking with someone else. I can walk without them, it just is quite difficult (especially in any busy situation) and drains a lot of my energy, making other things worse. I've been thinking off and on about a service dog to help with this - specifically with guiding and forward directed motion (and with other issues too, like the lightheadedness/presyncope) - but I have no idea if anyone has looked into this before, or has a dog that does such things. I think (but am not 100% sure) that the degree of difficulty I have walking qualifies as a disability under the ADA/ADAAA (see: substantial impairment of major life activities (standing, walking, thinking, concentrating, neurological/brain functions)). I would rather get some helpful treatment otherwise (simpler!) but I'm getting a bit pessimistic at this point. My spaciness while sitting is mostly an attention issue - I lose track of time, drift easily from concrete, organized thoughts into a general blurred vision kind of blah state where I lose most of my mental processing. I can shake it off sometimes (unlike while walking), but it again drains energy and usually I can't do much more for the rest of the day brainwise. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 6, 2012 Report Share Posted June 6, 2012 Peregrine - my memory is bad, so I'm not sure if I've mentioned this before... if it started with Cymbalta, is it possible you're in a protracted withdrawal or discontinuation syndrome? So much of my stuff started around the time I had been on Paxil and or Klonopin. Both made me feel weird while on and both had nasty, long withdrawal - possibly permanent damage. People don't realize how long it can take for some to recover (months/years) from the effects of these drugs. Plus I see the different meds you're taking now.... is it possible any of this might be causing the perceptual/cognitive symptoms? I don't know if you saw my post about the Spect Scan - if you're interested, that test can look at brain blood flow. Not that the results lead to a solution.... Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 6, 2012 Report Share Posted June 6, 2012 Hmm - it's been a while since I was off Cymbalta (I was on it 3/11-7/11 and then 10/11-Jan 2012). I guess it could be a withdrawal thing, but it hasn't changed whether I've been off of it or on it - hard to say. Doctors seem to think it's probably just going to stay the same at this point as far as we can tell. I'm on various meds, but the only ones that have been consistent throughout the POTS time are Lamictal and birth control, both of which I was on for 5 years before this whole thing started, so I think I'm comfortable ruling out the effects of meds in my case. None of the other brain meds have made a difference POTS-wise. Certainly the combination of chronic pain/bipolar/brain meds does affect cognitive issues (and I have some additional visual symptoms exacerbated by serotonin-inducing meds), but the POTS stuff is above and beyond all of that, and is unrelated to the visual stuff. I appear to be Complicated, unfortunately. But the spaciness - definitely dysautonomia something.Can they do the SPECT standing up? I haven't seen your post, but I'll take a look :^) Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 6, 2012 Report Share Posted June 6, 2012 Ahh, apparently SPECT is only lying down (from reading your other post - helpful, thanks!). I suspect it wouldn't be too useful for me, then, given that my issues largely disappear when I lie down. I do know that there are no blood vessel (structural) abnormalities in my brain from a contrast MRI, but nothing about blood flow. Sigh... Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 6, 2012 Report Share Posted June 6, 2012 The Spect was done laying down. I wasn't expecting it to show anything for that reason - but it did and in the exact areas where I have problems. I have to assume if I have problems with brain blood flow laying - well, I can only imagine what things look like standing. I'm not sure that many Dr's use this test and it doesn't really help solve any problems - it just helped me to make sense of things. Quote Link to comment Share on other sites More sharing options...
peregrine Posted June 6, 2012 Report Share Posted June 6, 2012 Hmm - that makes sense! Like you say, if you have problems lying down then you should definitely have issues standing up. If nothing else, good for your peace of mind and a good thing to show to future doctors and other folks to say "no, really, there is something wrong here!" which seems to be a problem many of us have... (sorry, didn't mean to imply that it wouldn't be useful!) Quote Link to comment Share on other sites More sharing options...
heathmcev Posted June 6, 2012 Report Share Posted June 6, 2012 Lemons, my issues during these episodes are largely spacial. Feels like I'm floating when I walk - have a hard time telling how far the floor is from my feet but at the same time it's like I'm floating (even tho I know I'm walking). My vision can be ultra sharp in that I focus in on things closely (noticing great detail) at the same time that my brain spaces out and tunes out surrounding noises & voices. I lose ability to focus on conversation or things happening around me. It's like everything is occurring on the periphery. I think I end up focusing on a sod infix object or spot in from of me to stay "grounded". Like peregrine, being led by someone really helps. Mostly these episodes happen in places like the mall, a busy street, a hallway in an office, etc. It's so disconcerting...(null) Quote Link to comment Share on other sites More sharing options...
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