yogini

Actually I couldn't see any leakage. The leakage is in my right abdomen/hip and I was lying down for that part, so i couldn't see the screen - not that I'd be able to tell leakage if i saw it. The graphic is pretty technical. I was only able to watch when I was standing when they did my lower leg. I could see them identifying and measuring veins, and stopping and restarting blood flow. A few times they had me do the valsalva maneuver, which the dr had requested. Cool to observe, that's all...

I want to say it was an ultrasound. Tis particular office treats vericose veins and i think that's what they have the equipment for, They put cold gel on my leg and had a little probe with more gel on it. I had a pelvic ultrasound once and the equipment looked similar. They pushed on the veins in my leg with the probe while I was lying down and also standing up. When I stood up I could see what was happening on the screen, which was cool The test took forever. I am still shocked that something showed up on it! The dr said the ultrasound (or whatever it was) didnt give detailed enough info and I'd have to have an X-ray/MRI to get a better idea of what is going on... I will say, though, that I don't have any pain in my swollen leg. The only indication is that my right shoes started feeling a lot tighter or stopped fitting.

Sue, I just looked it up. It's called May-Thurner Syndrome. I used to have very bad pooling in both arms and legs when I first got POTS. They would turn blue/purple. I still get that, but not as bad. This issue with my right foot is something different than "typical" POTS pooling. The reason I know that is because it happens only in one foot. It is interesting that this dr wants to investigate.he actually wants to run a bunch of other tests too on my exercise ability, etc. I will definitely keep you posted.

So I've had swelling in my right leg for a few years. I noticed this a few years after POTS when my right shoes started getting really tight. My right ankle and the the top of my right foot swells up, turn red, etc. I went to my GP a few years ago and he acknowledged it and said to ignore it. Last year at my checkup, my cardiologist that I see for POTS asked me about swelling and I told him about my right foot. He suggested some kind of test (sonogram?) to see if my veins were leaking. One year later, I had a checkup to get refills for my prescriptions and he brought up the test again. They happened to have an opening right away, and I had the test. I was expecting it to show nothing, but sure enough, there is leakage of veins in my right leg. This is actually the first test (other than the TTT) that has come back positive for me. The dr said the leakage is enough to cause my foot swelling, but he wants to investigate further to see what is happening in my pelvis area. - I may have to have an xray and/or MRI. I am all for finding out about this further! There is some kind of rare syndrome common in women where the arteries and veins cross;supposedly not serious. He doesn't think this is related to my POTS, but I am wondering if it is. If my veins are leaking, wouldn't this reduce blood flow? I was wondering whether any of you have been diagnosed with leaking veins? If so, what diagnosis did you get and what was the treatment? Thanks!

I would ease into it by doing 1/4 pill per day instead of doing 1/4 pill multiple times a day. You can do that down the road. Your side effects do sound normal and sound like the ones that lessen over time. It is important to note that beta blockers are not addictive. Addictive meds are like codeine or something that gives you cravings requires more and more and causes you to go through withdrawal. Many/most drugs are not addictive - think of Tylenol, Benedryl and lots of other meds over the counter. With many conditions you have no choice but to take a medicine - like if you have a thyroid deficiency, you must take thyroid medicine for life. In POTS, it is "optional" for many of us in that we can choose to live with the discomfort of our symptoms rather than take medicine. You have to evaluate for yourself whether the side effects of the medicine outweigh the benefits. In order to make this evaluation, you do have to give it some time. It might be uncomfortable for your kids temporarily, but if it works, they will benefit in the long run from having a more functional mom. A few days or weeks of discomfort might be worth it; it also might not be, but you'll never know til you try. I will tell you that one pill - which used to be atenolol and is now Paxil - is the difference between my having to stay in bed all day and being able to go out and work and being almost fully functional. So maybe I am a little biased in my advice! Let us know what you decide.

I heard if you have a liquid diet for a couple of days before the procedure, you odn't need to drink as much of the stuff....

Have you looked into other medical treatments to hepl your symptoms?. Even though beta blockers are the most logical, other POTS medications help with my HR. For example boosting BP through florinef, midodrine, SSRIs, etc. help may people with high HR. My understanding is that an ablation usually doesn't help POTS, but it can help other kinds of tachycardia. There are some people here who have done OK with an ablation for a specific kind of tachycardia (though usually not POTS tachycardia). There are also a number of people that had ablations before being diagnosed with POTS, whose POTS got worse after the ablation. I would get a few medical opinions before proceeding with an ablation, preferably from at least one dr specializing in POTS, so that you can make the most informed decision.

Getting a good night's sleep is key to feeling better. I once didn't sleep for 2 weeks. After that I went to the dr, who gave me a brochure about sleep habits. You are not supposed ot have caffiene for 12 hours before you sleep (I actually gave up caffiiene for a while). You should sleep in a dark room (I also use a mask), I also got sleep music which you can buy online which makes you drowsy (It really works). My dr also gave me ambien as needed. It works really well for me. I only take a fraction of a pill occasionally - it's usually around my cycle when I can't sleep. I also take Benedryl, 1/2 dose. The great part about Benedryl is that it isn't addictive.

Yes, ESP belching. I am constantly burping when my POTS is acting up, not just when I'm upright.

Though I'm not sure, I recall something like 2 weeks to a month for florinef, but not much longer than that. My dr told me not to increase salt/water with florinef, but after researching and reading old posts I think that is what you are supposed to do. I found that increasing it made my florinef more effective. You may want to consider that before increasing your dose, especially if your dr is resistant. You could also ask for an intermediate dose like .15mg/day. My understanding is that florinef is not as harsh of a steriod as prednisone, so I am not sure they are comparable. Though florinef has heavier side effects/more potential long-term effects than other POTS drugs. You just have to balance how much it improves your functionality vs. the potential risks - and that is individual to each person.

Yes, definitely. I always get POTSy when I'm hungry or my blood sugar is running low. I also started eating breakfast just because of POTS! Overeating also makes me POTSy. You just can't win with this condition! :0

Beta blokers may take a little while to adjust to, but are nothing like Florinef and SSRIs. Check with your dr, I am not sure about Inderal in particular, but many betas can be taken as needed. If you take them as needed there shouldn't be any withdrawal at all. If you take them every day, you would need to taper off. You could also try a fraction of a pill if your dr approves and then build up. I am not sure what other meds you have tried, but I'd say betas were a million times easier than something like florinef. I know it is scary to try a new drug. If you ask about any drug on this forum, you will find that a lot of people have had a bad reaction. That makes it even scarier, but remember it is all so individual. betas are actually one of the more effective drugs for POTS. Remember that you will never know until you try. If it doesn't work for you, you will know pretty quickly and that is probably better than wondering.

What you are describing doesn't sound typical for POTS. If your body is not able to maintain electrolytes or fluids ,it doesn't matter what your intake is. Extra electrolytes or fluids may actually make things worse. Talk to your dr

Going uphill is hard for many healthy people, but we with POTS have an especially hard time. Your heart is beating harder to try and get enough blood to your brain while exercising. Your heart may not be strong enough or your body may otherwise be unable to maintain enough BP. If you read through old posts, you see many people have trouble just walking up stairs -- in fact, many people without POTS have trouble with this too and get out of breath. Running up stairs or uphill would be way worse. I think it is great that you are able to run on flat ground and feel OK. I am mostly recovered from POTS but still have a lot of trouble with cardio. Feeling like there is an elephant on your chest doesn't sound good. I would try to skip the hill part if you can!

I listen to all kinds of music other than Country and Teen Pop. When I'm not working out, I usually like slower music, like Adele. I need something more up tempo for working out. Here are some of my favorites: Destiny's Child - Survivor Shakira - Hips Don't Lie Jay Z/Alicia Keys - New York Black Eyed Peas - Let's Get it Started Kanye West - Stronger Christina Aguilera - Fighter anything by Michael Jackson

When you go from being "normal" to having a disabling chronic illness, it is a serious shock to the system. It's traumatizing and we all deal with it differently. Who wouldn't have strong emotions. I was never angry, but I was scared/paralyzed out of fear to do anything. I was so cautious and scared that when I did do things I was too worried to enjoy. It has taken me years to break out of this. Like Kelly I have learned to live one moment at a time - not worry about the future or regret the past but rather focus on what I'm doing at the moment. The other thing that I did was stay busy - whether through Netflix and audio books when I was to tired to move, reading about POTS to yoga and work when I was able to be active. Tonight I met a bunch of people I used to work with. One's daughter is mentally ill but refuses treatment, another lost his wife in a car accident, another's brother got shot in Iraq and has PTSD, another doesn't have a job. All these people were beside themselves for different reasons. I'm not sure POTS is any better or worse than this. Everyone has serious problems. I am sure that if I didn't have POTS it would be something else. When I was healthy, my job was eating me up and now I realize I really had no problems back then, but I didn't see it that way. Mentally I will never be the same as before POTS, but maybe I am actually stronger now than I was before. POTS has made me see the world in a different way.

If your BP is normal and you HR is high, sometimes treatments that increase BP help anyway. An increased HR can be a compensatory mechanism to maintain BP. if you increase BP another way, your HR could slow down. I would ask your dr. whether you have hyperPOTS could be a factor in determining your treatment, but i think it is much more complicated and individual to each patient. Have you looked into beta blockers?

Since almost anything under the sun can affect POTS (sleep, fluid intake, food, activities, menstrual cycle, stress, exercise, medication list goes on) I'd be inclined to look for another factor rather than such a small change in pressure. On the stairs theory, you'd have to consider the exertion/exercise, which is known to be one of the biggest triggers for POTS.

Interesting. It sometimes takes me forever to wake up. I lie 1/2 asleep, and sometimes fall back asleep or am in a state of being 1/2 asleep until I magically snap out of it, which can take me a few hrs. Like I wake up at 8 am and next thing I know it's noon if I haven't set the alarm. I have had some close calls where this caused me to get to work very late. Luckily I don't have to punch a clock, and I try to make up for this by working extra hours/ahead of time. I have always had the hardest time getting out of bed, even when I was a kid, way before POTS.

If she is having trouble walking, practicing walking could be a good start to getting over the flare up. That is how I started, a few steps at a time, building on that until I felt well enough to try other forms of exercise. I am no doctor, but any kind of movement should help. Another idea is stretching, which can be done lying down. Even getting out of bed for a while to sit in a chair is a good transitioning step. I know my parents were a big part of my recovery and she is lucky to have you!

I know many of you have reflux. I've had it my whole life. I've tried all sorts of medicines and they help a little, but not enough. I've had two endoscopies and thsoe came back normal. I thought this article from today's Wall Street Journal was interesting. I'm pretty sure that this new condition, NERD, fits me....in more than one way...lol! Thought some of you might be interested... Emerging Type of Heartburn Defies Drugs, Diagnosis New research suggests that in many people, heartburn may be caused by something other than acid reflux. But gastroenterologists are often stumped as to what it is and how to treat it. Some 44% of Americans have heartburn at least once a month, and 7% have it daily, according to the International Foundation for Functional Gastrointestinal Disorders. Heartburn that frequent is the most common symptom of gastroesophageal reflux disease, a diagnosis believed to be rising world-wide with obesity and advancing age. One 2004 study cited a 46% increase in GERD-related visits to primary-care physicians over a three-year period alone. But up to one-half of GERD patients don't get complete relief from even the strongest acid-reducing medications, called proton-pump inhibitors (PPIs), and most don't have any evidence of acid erosion when doctors examine their esophagus with an endoscope. Gastroenterologists have dubbed this condition non-erosive reflux diseases, or NERD. It has become a hot topic for discussion and research. "It used to be thought that all GERD was the same—you give patients PPIs and they'll all respond," says Prateek Sharma, a gastroenterologist at the University of Kansas School of Medicine. "But we're finding that a subset of these patients don't have acid as a cause of their symptoms." Tomatoes are a common dietary triggers for heartburn. Gastrointestinal experts now estimate that 50% to 70% of GERD patients actually have NERD, and studies show they are more likely to be female—and younger and thinner—than typical acid-reflux sufferers. They are also about 20% to 30% less likely to get relief from acid-blocking drugs. But their episodes of heartburn are just as frequent, just as severe and just as disruptive of their quality of life, studies show. Doctors suspect some may be suffering from a reflux of bile, a digestive liquid produced in the liver, rather than stomach acid, or from hypersensitivity to sensations in the esophagus. Another guess is psychological stress. A 2004 study of 60 patients conducted at the University of California, Los Angeles, found that those with severe, sustained stress in the previous six months were more likely to have heartburn symptoms during the next four months. "It's probably a bunch of different conditions put together in one basket," says Loren Laine, a professor of medicine at Yale University School of Medicine and president of the American Gastroenterological Association. "The ones we worry about are the ones who don't respond to standard therapy," he says. "Then we have to figure out why they don't respond." Most people with heartburn take over-the-counter antacids, H2 receptor blockers or PPIs, often on the advice of pharmacists or primary-care physicians. Many H2 blockers and PPIs are available in stronger prescription form as well. More than 113 million prescriptions are filled for PPIs each year, at a cost of $14 billion, making it the third largest-selling drug category in the world.Patients are typically referred to gastroenterologists only if their heartburn persists, or if they experience so-called alarm symptoms, such as nausea, vomiting blood or extreme discomfort. Gastroenterologists generally only do an endoscopy when the patient doesn't respond to taking a PPI twice a day for 12 weeks. Doctors seldom see evidence of acid erosion when they use an endoscope—a long tube with a lighted camera that lets them examine the esophagus—but there is debate over what that means. Some patients' heartburn may be caused by micro-erosions only visible with special equipment. Some may have symptoms that haven't produced damage yet, and in some cases, the damage in the esophagus may have been healed by the acid-blocking medication, but still, the heartburn pain persists. "The patient doesn't care if they have esophageal erosion of not. They are more concerned about the pain," says Dr. Sharma. To investigate whether acid reflux is involved at all, doctors can do a 24-hour pH test, inserting an acid-sensitive probe through the patient's nose into the esophagus, where it records any episodes of reflux. If acid secretions are normal, or if they don't correlate with the patient's symptoms, it is a strong clue that the heartburn has another cause. A newer version currently attracting physician interest, called impedance testing, can detect nonacid reflux, including bile. If reflux is normal and doesn't correlate with patient's symptoms, doctors typically diagnose "functional heartburn," which means they have ruled out known explanations. "That's what you call it when you don't know what else to call it," says David Clarke, a gastroenterologist in Portland, Ore. By some estimates, functional heartburn accounts for up to 50% of NERD patients. One theory is that sufferers have a hypersensitive esophagus, in which nerve endings interpret even normal digestive sensations as painful, similar to fibromyalgia. Acid-suppressing medication doesn't help, but low-dose tricyclic antidepressants seem to modulate the pain in some patients. Studies also show that patients diagnosed with functional heartburn exhibit a high percentage of psychological stress. Dr. Clarke says he found that about one-third of his patients with heartburn didn't get better on proton-pump inhibitors, or have evidence of acid reflux, but in virtually every case, they had severe stress in their lives. Once the stress was recognized and resolved, their GI symptoms improved. "Many people with those conditions aren't as aware of them as you would think," says Dr. Clarke, who is president of the Psychophysiologic Disorders Association, a nonprofit advocacy group for stress-induced medical conditions. And many GI specialists don't have the time or training to help patients understand how stress might cause their symptoms, he says. Mainstream gastroenterologists say there is little evidence that an inflammatory reaction causes heartburn. Then again, doctors have long counseled patients to avoid common "trigger" foods such as chocolate, peppermint, peppers, alcohol and caffeine. "A lot of standard advice that we give hasn't been proven," says Dr. Sharma.There is surprisingly little research on whether certain foods may cause heartburn. "Why not try diet first instead of drugs?" asks Jan Patenaude, director of medical nutrition at Oxford Biomedical Technologies, Inc. The South Florida lab company tests patients' blood to see if it forms an inflammatory reaction to any of hundreds of foods. Patients then stop eating any suspect food, then gradually add them back to see if their heartburn returns. Other standard recommendations are to quit smoking, not lie down within three hours of eating, get sufficient sleep, avoid tight clothes (particularly those that constrict the waist) and lose weight. A recent study in the Journal of Obesity found that when patients who were overweight or obese lost weight, they had a reduction in symptoms. Many doctors tell patients with NERD or functional heartburn to continue taking proton-pump inhibitors, despite studies showing they are less effective in such cases. The Food and Drug Administration has issued warnings that long-term use and high doses can increase the risk of bone fractures and bacterial infections—and may reduce the absorption of key nutrients, including magnesium, calcium and vitamin B12.

10-15 bpm, I think

I think pupils ilate when there is low blood flow to the brain, but no idea why it would happen in just one eye.

There are many other forms of POTS treatments that help with heart rate. I have normal to low BP and the medications that help BP (Paxil, Midodrine, Flornief) have all helped my tachycardia.

I went to a dr listed on the DINET site as a POTS specialist. He had a tilt table in his office and everything. During the TTT, my hands turned very dark purple from pooling. I asked what it was and he told me it was nothing. I think there are very few drs out there that understand all the symptoms of POTS. That being said, it sounds like the cardio you saw doesn't have the best bedside manner on top of being ignorant. He does sound like a nightmare. You deserve so much better than that. I would definitely go to the other dr that someone else here recommended to you.