Has any one had purplish finger nails with autonmonic dysfunction? I am 25 petite female, non smoker. My heart goes up to 150bpm at times...it especially wakes me up at night. I had a negative tilt table. I had a cardiac MRI, chest xray, blood work, pulse ox...all normal. The drs are telling me it's anxiety. I know anxiety doesn't cause purple nails and trouble breathing. It is not raynauds. I am so scared and need advice
When I was in hosp before my TTT they could not find anything wrong with my heart itself.......so I was like 'why are my nails blue??
Maybe this is a common finding due to circulation issues. To begin with I was really freaked out about this but not so much any more. Maybe it's caused through all available blood going to the major organs so the extremities are rationed!
There will be people here who can give you a more educated and detailed answer, this is all new to me. They will also help with your other issues.
When you say you had a negative TTT was this as you did not pass out...is this what they were looking for? or was it to look for POTS....what did your heart rate do? Your symptoms are probably causing you anxiety and this a normal response.
Yeah... besides the fact that having our bodies get weird on us is anxiety provoking by itself... there are chemical/hormonal responses that mimic anxiety that can be involved. So for instance if something is struggling in the body, even just BP drop or blood sugar drop, you can get a rush of panic-inducing chemicals as a response and it can be misdiagnosed as anxiety attack... same with some of the heart issues (some of which are a bit elusive).
Since a prior TTT was negative it may or may not be worth retrying. It is quite possible to have a negative and later have a positive, but what might be best to try in the mean time is the "poor man's tilt" where you monitor your heart rate & blood pressure after laying down for a while, then upon standing for a while. Take readings like every minute or so and log them. POTS can (should) show up there and it can be intermittent (have it bad one day not another... or worse in the morning better in evening).
Also, how closely did they look at heart issues? Did they get as far as cardiac stress test... or holter monitor? Did a doctor dismiss your nail color already, or are you just checking to see if you should mention it to them? It is potentially related to circulatory issues so it should warrant extra scrutiny from a doc and they should not write it off. Some still might but you just have to move on to another doctor and calmly and tactfully request a review of symptoms and ask/insist about further testing. It is a frustrating process and some docs are especially frustrating... try not to let it get to you or feel free to vent to us :)
ThNks. I am completly frustrated. I have seen at leAst 6 drs and they all looked at my nails and said they are not concerned. They can barely ever hear my bp in my arm! I had a cardiac MRI, it was normal. I feel like something bad is going to happen to me...and I am scared. Nails don't turn for no reason...especially to bluish purplish. I just wish someone has had these symptoms, so I can start somewhere. I am tired of my heart racing when it feels like it and I just don't know where to go from here. I know it's not raynauds, but they do get worse when cold...
Having uncertainty is one of the most aggravating things. The thing is it can be nothing or it can be something... it can be coincidental or it can be meaningful. The doc should take it into consideration along with all other symptoms. Sadly what docs seem to often do is pick a convenient benign explanation (an excuse really) for each symptom and just assume that's what it is... in order to ignore the larger more complicated possibilities. I've had situations where contradictory explanations are given to explain away symptoms... like my having orthostatic intolerance from being deconditioned and my having bradycardia from being in such good shape! It is ridiculous enough to be funny, if it weren't also so frustrating :)
I think you just have to be persistent as well as try not to let that add to the existing natural fears. Easier said than done, I know. Autonomic problems can be exacerbated by stress, so one has to guard oneself from this... and docs end up doing more harm than help some times.
Have any of the docs looked closely for more subtle heart issues? I don't know all of the varieties but things like IST, Long-QT, PVC's, etc???:
If your symptoms aren't timed with standing up, then it isn't likely to be POTS but it could be other things. I do think a regular anxiety attack can cause breathing difficulty... but so can other things. They shouldn't stop the search there, especially if there are other circulatory clues. What tests have been done so far, beyond the cardio MRI? Are there any other symptoms that might have gone missed that could be an extra clue?
I do have pvcs, but not anything they were worried about. Once in awhile when I stand, I kind out black out. Meaning I get light headed and have to hold the wall for a couple of seconds. I do have polycystic ovaries....they have not figures out good meds for me, so it is not on check. Other than my nails and my shortness of breath...I have random symptoms. My heart races when it wants to...but I have been dealing with that for 5 yrs now. I do get light headed a lot...but I always thought it was due to the low bp. I have lost 10lbs, but they weren't too concerned about that either. I have a dry cough. I am new to the Raleigh area and don't know a good dr to see. Thanx for listening to me... I just feel like I am never gonna get diagnosed! I have had an echo...and a thallium stress. The stress actually showed a large blockage in my heart, but I got a second opinion and he did the cardio MRI which came out comp normal. He didn't recommend further testing for my heart. Who would I see to find out if I have a circulatory problem?
I get the lightheadedness often too... and basically have POTS/OI (tachycardia upon standing and often a BP drop)... though I have fainted a couple times that has been rare. In bad phases I've spent a lot of time "half conscious" when trying to walk around!
I took fludrocortisone for a bit and it helped keep BP more solid... I wasn't having the extreme lightheaded problems as much. Don't know if fludrocortisone would be an option for you but it might help. Have any docs mentioned it?
In terms of exploring an autonomic disorder as a possible match for yourself, here are some links if you have not perused them already:
The normal braniacs around here are under the weather but they or some other people might have some better tips too.
BTW, my doc told me I have the type of condition that takes like 10 years to diagnose! I suppose he was trying to soften expectations but it also comes across like saying "we're in no hurry to help you"! It's lousy to be stuck in medical limbo.
For me, during phases where my BP is bad (orthostatic hypotension) my heart will be more prone to flipping out. I've only had mild and infrequent chest pain, usually I get the intermittent dry cough and short-of-breath feeling... probably somewhat like you. Separate from that, I get what are most likely adrenaline/norepinephrine surges that mimic a panic attack sensation... as the body flips out trying to keep the basics going (like keeping BP up and avoiding fainting).
They can happen from hypoglycemia too (and probably other stuff). There can be benign tumors that cause similar "panic like" symptoms, called pheochromocytoma. Or other remote possibilities are something like Addison's (which can involve orthostatic intolerance and usually brings rapid weight loss) and is very stress dependent. Now that I think about it, thyroid troubles can be a bit like that and one can even have a period of overstimulated state, then a crash where the thyroid kind of sputters out. Those latter issues are "endocrine" issues... I don't suppose that side of things has been tested out for you? A general practice doc can do some checking but an endocrinologist is the specialist there.
I wish I could help more. I'm not sure what avenue could be best or quickest for you to pursue. If you end up in the "dysautonomia camp" it does seem that we burn through doctors, face long term frustration with docs (or even disbelieving family), and are very prone to misdiagnosis as depression and/or anxiety (and those things are also prone to be mixed in on top of everything).
I've had trouble with blue nail beds and even blue lips when my dysautonomia is totally out of control. Even with blue lips, the doctors thought it was no big deal. I'm not sure that mine are from the same cause as yours though, because my heart actually stops during tilt tests, and I generally don't have a high pulse unless I have a very dense doctor to deal with. Do you remember how your tilt was done? Were you almost upright or almost flat on your back? How long did the test last? There are a few different ways to do the tests, and I think some work better than others.
I think the test was about 10 minutes. I had it done about 4 yrs ago when I wasn't having as many symptoms as I am having now...so I don't know if that has to do with it. I didn't pass out, but my heart rate did go up, but she contributed that to anxiety.
If your test was only 10 minutes, then I think you need a new one. Hopefully some other people here will chime in, but I don't think 10 minutes is long enough. Some places go 45 minutes. Others are slightly less. Mine were about 10 and 15 minutes each, but that's because I passed out and my heart stopped. Also, heart rate going up is often a sign that your BP is about to tank, so it sounds suspiciously like she stopped the test just as it was getting good.
My tilt table lasted 20 minutes for the first part. Then, they gave me nitroglycerine and tilted me again. Two minutes into that tilt, I passed out. If I ever have a tilt table test again, I plan to not have the nitroglycering part of the test!
This can effect your breathing. When I first crashed I was having times when I felt I could not breathe properly, kind of like I had been winded and my voice would change to!!! It can effect any function that our bodies do automatically.
The symptoms of this are widespread and varied, and they can change on a daily basis, this is one reason - amongst many others - why getting a correct diagnosis is hindered.
Have they done a holter monitor and/or ambulatory blood pressure monitor? What is the frequency of the episodes you describe where you start to black out and have to hold on to something? Daily? Weekly? Monthly? Are they frequent enough that if you wore heart/bp monitors for a few days you would likely catch one or more of these episodes? What about your episodes of SOB and tachycardia---would those be frequent enough?
If so, these types of monitoring could be useful, especially if you keep VERY detailed notes on the symptoms you are having at exact times so they can correlate those to whatever the monitors pick up. If it is dysautonomia, correlating symptoms to blood pressure to heart rate to position (sitting, standing, or lying down) and other relevant factors (exercise/activity, environmental temperature, meals, etc.) can often give a pretty good outline of what is going on.
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