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Everything posted by mkoven

  1. I teach at the university of illinois, and find that I have to change positions regularly. Because of joint pain, I can't teach standing, as I used to. I always make sure there's a good chair in the front of the room, and teach from a seated position. I also make sure that no individual class meeting is longer that 90 minutes-- so for example my colleagues teach grad seminars once a week for three hours. i split my seminar into two meetings. With grad students (older, more mature, more intimate group), I bring an ergonomic lawnchair to class. If I need to recline, I do. It was weird at first, but they got over it. don't think I could do this in a lecture hall, though. during the first class meeting, I briefly say that I squirm a lot, and that it needn't be disruptive. One more practical thing. I don't write on the board because it's too hard on my shoulder and is tiring. i write directly on an overhead transparency, so I can make smaller movements. I grade and read in my favorite recliner. All these accommodations were put into place because of joint pain from eds. but they also work for ncs. I've just been diagnosed, am not yet on meds, but the compression stockings also help me.
  2. I did end up going to the er-- and was admitted. EKG and 3 repeat cardiac enzymes normal. They just released me and want me to come back tomorrow morning for a dobutamine stress test. the doctors there had a pretty restricted definition of how ncs should manifest-- and didn't think my description of symptoms fit. Don't know what to think. But at least we can rule some things out with the stress test.
  3. How do you know not to worry about it/get it checked out?
  4. Hi, I've been diagnosed with neurocardiogenic syncope. I've had holter monitors and an echocardiogram. the only thing that came back off was tachycardia, but a normal rhythm. I've been trying to exercise. I'm able to use the recumbnet bike for 24 minutes and do pilates with little problem. but when I walk for more than 2-3 minutes I get incredibly short of breath, tired, light headed, sweaty, and a little funniness in my left arm. I'm concerned that there might be something else than ncs going on. Does this sound like ncs? The electrophysiologist I saw said that ncs shouldn't make me short of breath or cause lightheadedness while exercising--just after. (and that's true for me when I bike.) Could it just be that walking, because I'm more upright, is more taxing on my system? I just want to make sure that I don't have some blockages in addition to ncs. I'm 39, female, have eds, and dhave never smoked. I had a stress echo with dobutamine 2 years ago which was fine. They were going to repeat it, but i had a severe allergic reaction to the ekg adhesive, so wouldn't repeat it. I just can't tell anymore when to be concerned. I don't want to run to the er all the time. If I'm just deconditioned, maybe I should continue trying to walk, just more slowly?
  5. Thanks for all your replies. I'm just desperately looking for med-free ways to feel better. I worked a lot on the computer today, and did not feel good when I got up. Head pressure, short of breath. It's freaky. This was with the 30-40 stockings--without which I'm sure I would have felt worse. It's just hard to know when my symptoms are worthy of an er trip or even a doctor's call. Still learning what's normal ncs. Because typically ,short of breath, faint, sweaty, chest tightness is the combo that means "call 911." I've had ekgs, and echocardiogram, and 2 30-day event monitors. The only abnormality was tachycardia, but always with a normal sinus rhythm. I can't do the tilt table, because my joints can't take being weight-bearing so long. Haven't done a dobutamine stress test in a couple years, and I'm too allergic to the adhesives they use. Hard to know when to act... As I'm sure you all understand, the er is a huge ordeal-stress, time, money, and energy-wise.
  6. Thanks for the welcome! this whole thing has been quite unpleasant, but it's good to read others' accounts of what's "normal" for ncs/pots. I feel like such a freak around all my friends and family--I've always got something going on. and people are quick to tell me it's anxiety or stress. And it's not like there isn't plenty of that--this past summer has been VERY stressful professionally. I'm sure the stress hasn't helped. But this thing also seems to have a life of its own. I don't know if this could also be ncs/pots. since May I get these episodes of weakness. At first they were one-sided, and I got checked out for stroke. All clear. As they were onesided till recently, and alternated sides, the tentative diagnosis was hemiplegic/atypical migraines. they last too long to be a seizure. They last up to several hours and then pass. Now they are bilateral, affect arms, legs, and face. It's not really noticeable to someone else, but I can feel that my fine motor skills wax and wane during an episode. it also feels a little blood sugar related. When my blood sugar feels low and I'm really hungry, they are worse. Pots/ncs related? I could call the neurologist and make an appointment. I'm just tired of always showing up with these weird symptoms and having someone tell me it's psychological. I could make a career out of going to the doctor...just not a very fulfilling/satisfying one....
  7. Hi, This is my first post here, though I've been lurking for a bit. An electrophysiologist recently diagnosed me with neurocardiogenic syncope. I also have hypermobile eds. Any way, it's all gotten much worse since this summer. Before I would feel like I was going to faint a couple times a month. (I think my first faint-spell was four years ago, and triggered by super-intense exercise. ) Now it's all day long. I really want to get on top of this. I work full-time and want to keep being able to. I've come off prednisone in the last month for some serious allergic reactions and have noticed that my faint-spells have been much worse since. The cardiologist says this makes sense, as the prednisone kept up my blood volume, and I may be a little adrenal insufficient now as my body gets used to being prednsione-free. So far, I've found that 30-40 level compression waist-high stockings help a lot. But not as much as I'd like. I'm hesitant to try meds, as I react strongly to drugs and am allergic to 30 different one at this point. I've been drinking and salting up a storm, and don't notice a huge difference. I have a rx for lexapro, but have been nervous to start, as I react so unpredictably and have too much going on at work to play around with side effects. Maybe over thanksgiving? Anyway, I'd read that tilt training-- or basically training yourself to be upright for longer periods can be effective. I tried last night, with my compression stockings, to stand for a measly five minutes. After 3, I started getting sweaty and nauseated. I probably should have sat down then. But I felt down right sick at 5. Has anyone else done this? How does one start/ease into it without making oneself sick? (I figure I've lost some of my ability to stand for long periods , because with my bad joints, I've avoided static upright postures for the past couple years. Now that my joints are feeling a little better, I've wanted to stand longer. Oddly I can walk for about ten minutes- and only feel faint when I stop. I guess walking keeps the blood moving...)
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