I would *insist* on a tilt table test... it took years before I was diagnosed with POTS because even cardiologists and neurologists just attributed my symptoms to anxiety and didn't take me seriously. Make them take you seriously, and if one doctor doesn't then go to another. Also, I get symptoms such as dizzy spells when I'm sitting down as well. My heart rate goes up when I'm standing but my symptoms are not isolated to an upright position... and my BP slightly goes up when I stand, not down (usually), so I think people experience many varieties of the same things. I'm no Dr. but to me it sounds like POTS is a definite possibility.... good luck!
Wow- added it to your allergy list! I hope this doesn't happen to me, though my GFR last year didn't look so hot. I get a lot of inflammation in my TMJ joints. & I was told ibuprofen was the best medication for it. I have arthritis in my jaws and one disc dislocated without reduction (dislocated all the time) and the other dislocated with reduction (moves into place with my mouth opened wider). I also have GI problems and was told to try to keep the ibuprofen to a minimum, which I'm trying to do.
I had ecoli poisoning, which weakened my kidneys, and even though they "test" okay now, I'm unable to take ibuprofen, naproxen or anything similar without them causing this very thing... stop sign red, burning, puffy extremeties. I didn't have problems with ibuprofen prior to the ecoli, but always had a tendency towards "hot hands & feet" when the temperature increased significantly from one place to the next... and when exercising, especially walking with my arms at my sides. I also have POTS, caused by Ehlers-Danlos, but I don't know the connection between all the variables. I do think there's something to your ibuprofen theory, though. My doctor added it to my allergic to meds list for this very reason.
Dysautonomia is a condition that is widely misunderstood or just not known about by (unfortunately) a fairly sizeable portion of doctors, particularly if you are dealing with specialists outside of electrophysiology-cardiology and/or neurology. Even within these two specialties, it can certainly be hit and miss finding docs who are knowledgeable; your best bet is to look at a large teaching hospital.
I would definitely seek a tilt table test to look for autonomic dysfunction since the other testing has come up negative so far. There are of course other things that may be ruled out, but at this point I see no reason to continue putting off tilt table testing. You may need to change doctors if the one you are seeing doesn't have access to this test or knowledge about it or is not willing to refer you to an EP Cardiologist or Neurologist who does. There's nothing wrong with getting a second (or third, for that matter) opinion when your health is at stake.
Please feel free to look at my profile (click on my username at the top of this post) and browse through my pictures; included are some pictures of blood pooling in my legs/feet. I believe this is what you are describing. In medical terminology, this is "acral cyanosis." I also have pictures of flushing episodes there, which are also typical of some forms of dysautonomia, though you didn't mention your sister suffering that particular symptom.
If you do need to find a new doctor/hospital and need help/advice looking for one, feel free to ask. You can post here or send me a PM with your location (if you want to keep it relatively private) and I'll do my best to point you in the general direction of the hospital with the best resources in your area for diagnosing possible cases of dysautonomia (including POTS). This page talks more about that, and the handful of hospitals in the US with full dysautonomia clinics (if you're fortunate enough to live in the vicinity of one of those):
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
That's great news acutally, nobody wants POTS. They call this the club nobody wants to belong to. Good Luck
Frank
Thank you all so much for posting. We got another let down at the doc's office ... he said it was just her allergies and gave her allergy meds... if it doesn't get better I am going to insiste they do further testing. She has had the test where they check your circulation because her feets stay so red but the test came back normal. She has had an EKG, and like an ultrasound on her heart.
Red feet and hands are symptoms of POTS. I have had it since October of 2009. If I stand up, my blood will pool in the hands and feet, they will turn red and my veins will fill up and pop out. My feet feel like they're burning. Stomach pain is another side effect since blood pools in the stomach when standing. Also after eating, the body sends more blood to the stomach to digest food. This is also painful as the veins must be expanding there as well. I was diagnosed after 22 days in the hospital and confirmed POTS on a tilt table test. You can try taking your heart rate laying, sitting and standing, but when you stand you are using muscles in your legs that will pump the blood and throw off the test, the tilt table test (TTT) will have you strapped to the table and then elevated therefore you get a true reading. An increase of 30 beats per minute from horizontal to vertical or if you exceed 120 bpm within 10 minutes then you have POTS. Look up info on Dr. Blair Grubb in Toledo, OH.
Frank
I got red feet as well as oven brick like red knees for a time and even wondered if there was some connection with my taking ibuprofen. I was told by a rheumatologist I had "episodic arthritis" which could be brought on by stress & to take ibuprofen. Well I had an episode right in the middle of taking cyclic ibuprofen for something else. I know blood pooling and redness can happen with POTS with standing. And since her dizziness increases the longer she stands, doing more extensive orthostatic testing sounds like it may be in order.
However, since usually dizziness doesn't continue with lying down with POTS, but happens when being upright, I'd be wondering about a side effect of the BCPs she's taking as one possible cause of at least part of the dizziness. I'd also be exploring whether there is any GI bleeding with stool testing for occult blood, since her stomach hurts so much as well as a check for H. pylori. Blood iron and ferritin should be checked if they haven't been, as low iron can cause dizziness. A person can get symptoms from iron deficiency even if their CBC comes back normal (experience).
Does she also get coldness in her feet with the color change? If so, you might want to look up Raynaud's disease.
Hiya, I am sorry to hear that your sister is experiencing these symptoms.
Reddening of the lower limbs and extremities can, if other relevent symptoms are present, indicate POTS. Dizzyness can be a symptom of many conditions and often it can be hard to find the cause.
Do you know what happens to her heart rate and bp whilst standing? Do they change, if so what are their values in the laying and standing position. POTS is characterised by a heart rate increase of 30bpm or to 120bpm upon assuming the upright position. It is diagnosed by this and is not dependant on a drop in bp, some people even experience a rise in bp. If bp does drop when standing this can be another condition that commonly co-exists with POTS.
Below are some links to health pages on here giving you some information on these conditions:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction-FAQ/show/181?cid=196
http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196
Below is a link also for MVP:
http://www.mayoclinic.com/health/mitral-valve-prolapse/DS00504/DSECTION=symptoms
What testing has your sister had done so far? Has she seen an endocrinologist? There are several conditions that are differential diagnosis' for POTS and these should all be looked into before a dx of POTS is given. Another good informative website is www.dinet.org
Please let us know how she is doing and keep us informed of her progress x