mkoven

Pcp got back to me--electrolytes are apparently totally normal. Of course that's good, but if they were off, it would give me something concrete to fix!

few docs have seen many cases, so they often expect extremes of flexibility. A geneticist with experience would be the one to check. it is good to get diagnosed, because even in the absence of joint problems, there can be organ and vessel fragility that should be known about. many go undiagnosed. i'm glad to have a diagnosis as it unifies most of my problems, gives credibility, and I know that I need certain things, like my aorta, monitored. it's also the probable cause of my pots.

Earthmohter-- did you mean posts on this forum about norvasc and side effects? I did a search and couldn't find much. Are you referring to a different forum?

I just talked to my cardiologist. I guess it was an okay conversation. I think the problem with cardiologists, even the most human ones, is that they are (quite reasonably) most concerned with treating what is life-threatening not just qulaity-of-life threatening. She doubts it's the norvasc, but agrees that I'm not a typical responder to meds. She wants me to take two grams of magnesium today (instead of my usual 800mgs) to see if it helps with the skipped beats but said she wasn't really worried. Great-- glad to hear it's not dangerous, but it's really unpleasant. Not sure she appreciated that there's a threshold to how much unpleasantness I can tolerate! So I'll try the increased magnesium-- hope that's not so much that it drops my bp. I'm going to call my pcp to see if he has the blood work back, in case my electrolytes are off. I asked her if I could be getting more skipped beats because of hormones, and she said yes. from increased exercise/post-exertional fatigue--yes, but she doesn't want me to cut back. But she seemed totally unphased... a good thing? But I guess I wanted more concern... So we're not stopping the norvasc-- which is fine. I really do want to give it a fair trial to see if it helps my night-time chest pain amd migraines. and if it's an unlikely culprit, then I don't want to blame it. And my guess is that the main reason she works with me is because she thinks I do have prinzmetal angina-- the one heart-related condition that could really hurt me. and the rest is mostly distraction to her. Dysautonomia seems like it's sort of an orphan problem. It is rarely life-threatening, more often life-disabling, so less interesting to most cardiologists???? So with my pcp, I guess we can look for other causes of the increased skipped beats. I do drink one cup of coffee in the morning, but that's my only caffeine/stimulant. Don't think I can quit cold turkey without provoking a migraine, but I can start weaning.

I feel them all day long-- some more than others, I think the ones with the longest pauses are the ones that I really feel and give me the weirdest rush. The shorter ones I can tune out. I think it may be all day long. I think I really feel about half of them. I talked to the cardiologist on call at my cardiologist's office and she agreed I needed follow up, and got how annoying this is, but didn't think it was dangerous. I calculated, though that if I'm doing 6/minute, that's over 8000 a day. I don't know what happens during sleep. Could this be related to my ans issues at all? The causes I can think of: hormones, some weird reaction to my new drug norvasc (though apparently this shouldn't happen), electrolytes. I've also been switched from klonopin to valium to make it easier to taper off-- but that also seems unlikely. I don't think I"m in benzo withdrawal.

Before I was treated for ans issues, I also would drop my bp, and this would freak people out. I dropped my bp from 110/60 to 72/38 while exercising and this led to a flurry of invasive tests. Not saying this will happen to you. Some POTs people can do a treadmill test no problem, with a normal result. In fact, I had a normal treadmill test several months ago, but AFTER geting proper treatment. I had a chemical stress test (adenosine and thallium) that was abnormal--probably not pots-related, just because my breast tissue interfered with the signal and made it seem like my heart was not getting enough blood. I eventually had to have a heart cateterization as a follow up. I other words, sometimes tests lead to more tests. But it is quite possible your test will be completely normal. And if it's not, it can also be a red herring, because no test is perfect. And our ans issues can sometimes make our pressures and rates look abnormal, I agree that event recorders, holter monitors are also good for us to see what's going on throughout the day. The main thing is to have doctors who are knowledgeable enough about ans issues that they know we don't always look like other people and that weird results for us can have different interpretations than the standard cardiac patient.

Can't comment on Columbia, but Cleveland is good for diagnosis of any issues. Do a search in the archives. The consensus seems to be, and my experience fits, that they are less good for followup. I also found a certain unwillingness to talk about ans -related issues that weren't specifically hr or bp related. But it was a productive experience for treating my pots/nmh. I'm not cured, but my bp and hr are much more stable. It used to be when I checked, it could be anywhere fromm80/30 to 160/100. Now it always seems to be 110-120/70-80.

Well, I'm getting between 6-10 skipped beats per minute. I called the cardiologist on call who said this is not an emergency. but should be followed up on. She agreed that this is unpleasant and dhould be addressed, esp. as this is new. So I was surprised and a little freaked that they are so often-- and acouple instances where I get two in a row. And I've checked a bunch of times this afternoon, it's consistently this many. Any ideas/suggestions?

I get more pvcs on prednisone-- feels like a rollercoaster in my chest. i don't think it's dangerous for the short term. But I hate prednisone

My mother was 51 and I'm 42--so if that's true, 9 more years of this roller coaster???? Ugh.

I'm so sorry to hear your terrible news. I'm thinking of you. Michele

I take midodrine around the clock (not typical) every 4 hours. during the day I take 6.25 mgs, at night 5mgs. It does help, I just hate that it's so short-acting. I take it with florinef, which currently is a good combo. My bp is typically 115/75, even on all those bp uppers. I started on just the midodrine, but had a crash this summer when it wasn't enough. and when we upped the dose, my hr would slow too much-- so had to add the florinef.

It does feel strange that I"ve had such an increase in pacs--when they were such a rare occurrence. I swear it's multiple times a minute--and yes, it is the icky surge that gets to me. I may check in with my pcp to see if my blood work is back, in case my electrolytes are off--which would be easy enough to fix. I almost wonder if my magnesium fluctuates at different times of my cycle-- when I look up the symptoms of hypomagnesium, it looks just like me! But I already take 800mgs a day. My doc said it's hard to measure and absorb. The last we checked my hormone levels were normal, but my gyne said that doesn't mean anything, as it's just a snapshot in time. My mother didn't go thru menopause till 50, so, as you say, I may have a long free-fall ahead of me! My periods are still relatively regular, but increasingly miserable-- not the actual period, but all the other associated symptoms of feeling like I"m being crushed/smushed by a truck. I'm all for celebrating "natural" events in theory...

I don't think they do. I was there in August. So that may mean planning to stay over the weekend and into the next week, depending on what else they schedule you for. But I guess they can't tell you ahead of time, as they plan the tests depending on your response to the ttt. I had the ttt on the first day, and then they scheduled more testing the next day. I also needed to be seen by another department, which is always harder to coordinate.

I tried low-dose monophasics twice and couldn't tolerate them. I don't know if it's the synthetic estrogens? It seems like there isn't as much research on the bioidenticals, but that some people tolerate them better. I'm all for being alternative, but I do want to know if I'm safe--both with migraines and a family history of breast cancer. I know that "natural" doesn't necessarily mean safe. (Many non-dinet people have suggested I take licorice instead of florinef as "safer" because "natural," but at least with florinef I know it's more standardized and studied.)

Interesting-- do you take bioidentical or the standard? My neuro tells me beware because I get "complicated migraines" with tia-like symptoms. But I think it's definitely perminopausal hormonal fluctuations behind 90% of my health woes- from pots, to pacs, to allergies, to migraines, to allergies...To think I was a relatively healthy person who never went to the doctor or really needed to go until 7 years ago-- and I get stranger as time goes on. I definitely feel like the pacs are worst right after ovulation and right before my period. and this frequency is new. I'd say I'm getting at least one per minute, when it used to be one a week.

I've been having a lot more skipped beats, which I"m guessing are pacs from results of past event monitors. It feels like I get two close beats togetehr, then a longer then normal pause, then a beat. I could deal, but I get a big adrenaline rush from them. And I'm otherwise not emotionally anxious, but the sensation is triggering a weird rush. The triggers I can think of are my blasted hormonal fluctuations, maybe electrolytes off from florinef(waiting for results). I also started norvasc about two weeks ago. But they are really distracting/annoying. If my electrolytes come back normal, are my options then to live with them or take a beta-blocker-- contraindicated with all my allergic issues? I've been told to avoid hormones, because of my migraines, but I'm sorely tempted!

in general I do best with an inner spring with a pillowtop. I need some give to avoid pressure points, but too soft, and my back hurts/I get sciatica. I tried memory foam briefly, but kept waking up with sciatica. So we have an upper-end sealy inner-spring--relatively firm, but with a little padding on the top.

I think methylprednisolone works just as well-- just prescribed less often for some reason. I still get anxious and a little tachy but nothing like prednisone. My six weeks on prednisone in 2006 were a living @#$^^!

Prednisone always makes me tachy, always. My normal resting hr is in the 60s. It can easily be in the 140s on prednisone. I do better on methylprednsiolone, so suggest that when someone mentions the need for steroids-- still not great, still tachy with surges, but not as pronounced. Prednisone also makes me nutty, anxious, and hard to concentrate. I can't even follow the plot of a tv sitcom on 60mgs prednsione! My spouse dreads my taking prednisone as much as I do!

I sometimes watch tv with sunglasses on!

Some people are more "salt sensitive" than others. When I'm not on florinef, no matter hos much salt I take in, I eliminate it, and it doesn't affect my bp. the clevelang people told me to shoot for twice as much salt as the amount recommended for others-- don't remember if if was salt or sodium, but the number was 5g? I don't really count, I just salt liberally. When I"m feeling really crummy with low bp, I get a big bowl of Asian noodle soup and add lots of soy sauce, and that perks me up.

I think this is why florinef works for many of us. It helps us hold on to the salt and fluids. Without it, I also pee out much of what I drink.

Sometimes cold water or ice helps the itchies for me. I once had a bad reaction to an insect repellent and just took multiple ice cold showers when it would flare. Another time I'd slept on a pillow where a cat had been and had a swollen, lumpy, itchy red face-- again frozen washcloths helped.

Sorry to hear about that. Sounds disappointing. But you have proved to yourself that you can put yourself out there. And it sounds like the reason it didn't work out has nothing to do with anything you were concerned about. And it probably doesn't have anything to do with you or anything you did or said. Sometimes people just don't hit it off. Do you feel like you'd be ready to try again?