mkoven

That's terrible, Sara. I hope you currently have a good doc.

If you had an event monitor, you could turn it off if it was full and you couldn't call it in, and then wait till later. maybe then you could at least capture some of these rhythms.

Earth Mother, Can you tell me what an atrial run is? I had one and didn't understand what it was.

this is just my experience, but I find squeezing my abs super hard-- (essentially sucking in my gut, pulling my navel to my spine, as in pilates) will often help me feel like I'm getting more blood to my upper half. I

Not sure how it would affect pots for me, but with eds, I'd be very careful. you should avoid any extreme ranges of motion, and of course anything that just feels "wrong." I'm happier with pilates, when I've found someone who understands what I should and shouldn't do. I don't know much about yoga, but I do know with eds they tell you to only move your joints into positions where the muscles can still hold them in position. My muscles get tight but my joints are loose and don't need to stretch. For me, I avoid too much forward flexion, as I have a history of bad discs. I also avoid kneeling, as my knees are too loose, and I can feel that my shins get pushed behind my femur. and anything that makes a joint pop or slide or hurt I take as a bad sign. sometimes a good teacher can help you see if your form can be improved so you can still do a particular move. But on ednf there are a number of people who really messed themselves up with yoga, pushing their hyperflexibility to the max, and then losing the little stability they had.

Maybe something longer like a 30 day event monitor might be more useful. I think it'sr eally for diagnosing dangerous arrhythmias, but it either self-triggers or you push a button whenever you feel something. I've had 2 done, a year apart. I get more weird beats around my period, but nothing anyone is too worried about--pacs, pvcs, in addition to a fair amount of sinus tachy and sinus brady. the only annoying thing with the monitor is that I felt like I was on the phone on hold calling in my recordings all the time. My monitor could only hold 3 events, and I was pushing the button at least 12 times a day. (The jingle they play on hold started really grating on me!!!) and I am somewhat allergic to the adhesive from the electrodes.

I would go see your doc about getting a holter monitor or an event monitor to get those documented. Most of my weird beats just end up being pvs'c or pacs--but both feel unpleasant. But you won't know until they can be documented.

Not sure what she's publsihed yet. In a relatively recent issue of the ednf newsletter, there was a summary of some of her recent findings of things that occur in eds patients--and allergic reactions werethere. Maybe you could see if they have back issues on their site?

Good news! I'm still shopping for a migraine preventive. I've just started norvasc. If it's going to work, it won't be immediate, as I had a whopper migraine this week.

Now my major issue with this drug is whether it is the culprit behind the fact that I've been sneezing and scratching my nose constantly for the last 36 hours. can't think of what else it would be. But from what I understand, drug allergies don't usually manifest as sneezing/itchy nose. (I already take allegra, singulair, and flonase, and they're not helping. Even the 50mgs of benadryl I took last night before bed barely calmed it down enough to sleep.) Could sneezong be a drug reaction?

I am personally far more comfortable seeing someone who coaxes joints into place through soft-tissue (muscle/fascia) work, then chiropractic. Usually if a joint is out on me, it is a spasming muscle pulling it out. and until the muscle is released, it will keep pulling me out. Plus I do think chiropractic to the neck can be very dangerous for anyone with instability, chiari, vessel fragility, etc.

I think Nazli McDonnell has found an association between allergic-type reactions and eds.

In another attempt to stop my night-time chest pain episodes and stop migraines, my cardio and neuro have agreed to have me try norvasc. I tried it last night for the first time. I think it might be too soon to stay stop, but I don't think this is agreeing with me. I felt it kick in with this sensation of suffocating-- this shortness of breath that I get with low bp. My bp was actually okay but my pulse was really slow--50. And I just felt even more like fluid was sloshing around my chest, worse ability to stand, and major spaceyness. I hate to be so hard to medicate and I know I should give it a try, but part of me just thinks it's nuts to put someone like me on a vasodilator. How long do I wait before calling the doc to let her know? I suppose I could give her the first day's update. I can't imagine she wants my heart rate much below 50. Now that I'm up and about it's okay, but it seems less able to compensate for position changes, so I do feel more lightheaded.

I was sent to a speech therapist who could find nothing wrong. My shortness of breath co-occurs with drops in bp.

I've had my shortness of breath from ans problems misdiagnosed as vcd. i think a lot of docs don't understand how breathing is affected by dysautonomia

Get lots of sleep, eat and drink well (fruits/veggies/no junk), and generally take good care of yourself. I think any other advice is hard to really think of. zinc sometimes helps me avoif a cold-- don't know if it works for other bugs.

Great idea! Following up on our pms, feel free to use any of that. Since Cleveland is big on cardiac rehab, maybe a call to one of the folks who works there would be useful? either in the syncope clinic or in their cardiac rehab program? I do know that I was told initially not to let my hr get more than 30bpm over resting, or I'd trigger a vagal response. Maybe even adding some paragraphs on the physiological "normal" response to exercise, in terms of breathing, hr, bp, and things the ans can do to foul those up? So for example, what does a normal stress test look like, and what do the tests of those of us with ans dysfunction look like? I have heard that we can sometimes look like we are having cardiac distress-- and like me, end up in the cath lab! For most exercise physiologists, for example, plummeting bp with exertion rings all the alarm bells. They immediately think severe heart disease, not ans dysfunction. for them, bp in ans funciton is only an issue AFTER exercise. Of course, the responsible thing is to first rule out life-threatening causes, but it would be good for them to know how ans problems can also cause problems DURING-- so that we don't all end up in the cath lab. (Not a place I ever wish to return.) My most recent treadmill test was relatively normal, though I could feel adrenaline rushes when they'd ramp it up, and I felt some bp crashes when it was over. But nothing too terrible. this, however,w as after a dozen sessions of rehab.

sometimes I have to get on the floor and put my legs up at 90 degrees on a chair--get on a corset, salty liquid, and wait for my next dose of midodrine to kick in before I can get up. Since adding florinef this has happened less, but I still have some veriosn of this before my period. It really feels like all fluid in my body is being sucked to the ground. My husband knows I'm struggling if I'm on the floor with legs up on furniture.

There have been numerous posts about cardiac rehab for ans issues recently, which I find very interesting. It would be really nice to see some published protocols! I think the principle is that gradually building up tolerance for activity and upright activity is a good thing, and that many of us need monitoring along the way. But it;s hard since most cardiac rehab places don't really know what to do with us. I was basically leading the show, and they were there to tell me if my bp or hr were out of range. More rehab places need to know how they can help us.

All very interesting. I've posted before that my first bad ans episodes looked like anaphylaxis. I was reacting to EVERYTHING, felt like I could eat nothing (except rice and chicken). I also have dermatographism. I ended up on prednisone for six weeks-- not a good experience, and did not help entirely. Saw a top allergist, who weaned me off with high dose antihistamines-- allegra 2x a day, zyrtec 2 x a day, pepcid 2x a day, singulair, and benadryl for breakthrough symptoms. It did eventually settle down. I also test negative for mastocytosis, and am truly allergic (positve rast) to numerous things, but not as many as I was reacting to. I would get intensely itchy, throat would tighten up, short of breath, and I would feel faint with chest tightness. The allergists I saw are not believers in mcad. and don't deal in ans issues. (The one allergist tried to convince me that feeling like I was going to faint/couldn't breathe was anxiety. grrr. ) so now i explain that I have both ans dysfunction and am very atopic--and each triggers the other.

That's terrible news! I'm wondering if we can contact the manuifacturer and ask what the problem is.

My upright tolerance has varied tremendously since I started having problems. there have been times when I couldn't sit up for more than a couple minutes without feeling awful. Now, I can be upright pretty easily (except around my period), as long as I am medicated, compressed, and can keep moving. If I stand still, I feel ill within minutes. So I don't! I keep moving, make sure there is a nearby seat, or my rollator with a seat. Around my period, I do sometimes have to lie down in a recliner or on the floor with legs up if things are really bad.

I can't even load the site. It just times out. I'll look at my cookies/caches. In the meantime, would one of you be able to get on the site and find a phone number for me of who to contact and then paste it in? thanks! Michele

Ernie, How would you describe your formula for getting rehab to work for you? I also did some rehab-- maybe 16 sessions--and found it helpful. But the people didn't really know what to do with me-- they followed my lead, as they'd never had an ans patient before. I had my rhythm monitored, but they didn't ck my bp as often as I would have liked, as that is where my issues mostly lie. And they're so used to working with hypertension. It basically was supervised exercise. I also made sure to always bring lots to drink and needed extra time after the session to restabilize. I now work out on my own with a hr monitor, going by symptoms. My rule of thumb is to slow down if I start feeling unwell and see if that's enough to normalize things. I have to ramp up slowly, or my ans can't adjst. And I do better with increased resistance/incline than speed-- I guess it's more forceful muscle contractions, moving blood better. But it would be really nice to see a written protocol for rehab for ans people, since our issues are somewhat different from those of people with more standard heart disease(s).

KathyP, Does this mean that you continue on a hormone regime? If so, are there concerns longterm about cancer or clotting? I can say that my symptoms definitely feel hormonally triggered. I had my first bad episode at 35, and then only intermittently before my period. I'm 42 now, and my cycle feels like it's the most direct culprit. But no one is willing to put me on hormones (me included) because of a history of complicated migraines and a family history of breast cancer.