jknh9

Yes, I eat plain organic Greek yogurt with blueberries and a touch of honey and walnuts for lunch most days. I notice it helps with gastro problems and seems to ward off angular cheilitis, which I suffer from frequently. On days when I don't have yogurt, I often take a probiotic supplement. The first few days I took those, though, I had a lot of tummy rumbling and gas. I looked it up and supposedly it's the bad bacteria in your gut dying off that causes those symptoms the first several days. I don't know how reliable that information was, but I don't have those problems now when I take them.

I've taken Yaz and it was fine, but you have to watch your potassium levels. Recently, though, my doctor took me off the normal pill and put me on progestin-only pills because I occasionally get migraines with aura and the estrogen can make it way worse.

It's interesting you mention it was stormy and he was having a bad day. I have noticed that the worse the weather is (i.e. lower barometric pressure) usually the worse I feel. The weather has been miserable where I live, too, this week, and I've had a really bad week. I also get tachy when sitting down. I will faint if I sit in one position too long without getting up or fidgeting a lot. Have you tried compression stockings? I don't know if children benefit from them but on days when I don't feel well they seem to help. I use medical-grade compression sleeves for my calves that I got at a running specialty store.

That sounds like something out of a bad Marx Brothers movie, you know, if Harpo would have had POTS or something o_O lol! Wow, I'm really glad they're sending you for a second opinion. You said the strap was under your arms?? Did you get bruises from that?! I was strapped in straight-jacket style. I can't imagine being up for 32 minutes! You deserve a medal for that! After only like 30 seconds of being up I started begging them to stop the test and when my vision started to go I actually cried out for help... whoops! I really really hope I didn't alarm any of the cardiac patients... Yeah, they gave me about an hour afterwards. They started the IV fluids before I even came to, and then once I could sit up, the doctor came in and went over the diagnosis while I had a huge glass of water and a chicken salad sandwich generously provided by them-- along with two salt packets I was told I had better use! They wouldn't let me go until I finished eating and I had taken 2 bags of saline through the IV. Honestly, I was SO ready to do the test by the time they finally prepped me because I felt like I was dying of thirst from the fasting. I hope they can get you in quickly and all goes well!

Hi Amber, Here's my two cents: 1. I was strapped in pretty snug at the shoulders/chest, abdomen, and knees. I don't have weak knees but the way I was strapped in I don't think it mattered. I fainted and was unresponsive, but they told me I seized, so I'm not sure how limp my legs went. It's kind of disturbing to me that they didn't have you properly secured. Our bodies can do some crazy stuff during that test. 2. Me too!! I am incredibly fidgety. I get the feeling people think I'm super impatient or just a jerk when I fidget standing in line, but you gotta do what you gotta do. On the TTT, I was fidgeting a lot but I was strapped in so snug it didn't matter. I was out like a light within 2-3 minutes of being up. Also, regarding your original question-- mine was also scheduled for 45 mins but the doctor was quite late because of an emergency case before me, and after they finally had me lying down I was down for about 25 minutes before they came in to do the tests. 3. The fact that they didn't take your resting HR is also bizarre to me. They hooked me up to everything before they laid me down-- heart monitor, blood pressure cuff that took BP every min or two, and IV (though they didn't start the fluids until afterwards). So for me, there is a constant 25-30 minute record of my vitals during that time. Also, the nurses and doctor left me alone the whole time and told me if they popped in while I was down not to talk because that could throw things off. They only told me to talk once they began to tilt me, at which point they asked me to report how I was feeling. The doctor was watching the monitor the whole time they tilted me and said I had POTS in about 10 seconds after I was up. About relaxing, they dimmed the lights for me and I was alone in a small room so it was a little easier. I think about petting my cats when I need to try to relax and about how I try to comfort them when they're scared. Maybe it's silly, but it really seems to help I really hope your next one goes better. It's so frustrating when doctors/nurses aren't completely versed in what needs to be done but they try anyway so as not to lose face :/

Thanks, Sheila. Nashville is a bit of a hike for me but I have been eying Vanderbilt too. I found a neuro who treats POTS, NCS, MSA, chronic fatigue, and other autonomic disorders. I have an appointment for mid-June. He is located in Camden, SC. Fingers crossed!

I get the twitches too, but I also get a pinching sensation that feels like it's just below the skin. It comes on suddenly, just like a twitch. I wonder if this is along the same lines?

Hi all, I've been googling for a couple of hours now trying to find some leads on a new doctor for POTS and NCS. I live in rural central SC, though, and it's pretty difficult to find any doctors who have even heard of these disorders. If you have seen any personally or have a lead on any doctors in SC (Columbia, Charleston, Greenville, Clemson, Spartanbug etc), southern/western NC (Charlotte, Asheville, Hendersonville), or northern-ish GA (Atlanta, Athens, Savannah), please let me know!

Anoj- I did this once, too, when I got summoned while I was living in Ohio. I was a week away from moving overseas, so I wrote a letter and I never heard anything more! AmberK- Thanks so much for your sympathy and advice. I fear that most doctors are like this, even the ones who have actually heard of POTS/NCS etc. I've never, ever been a patient to raise a fuss or complain to the doctors; in fact I was diagnosed only after strangers called paramedics to take me to get medical attention. I thought that I should only make a fuss when it was really necessary, and it really discourages me that one of the only times I do explicitly ask for help, I get shot down. anna- That's a good idea. I'm going to request a copy of my medical file from my present doctor anyway to send to the new doctor (whenever I can find one), but that's a great idea to keep that information handy for situations like this. Well, I typed up a letter yesterday to the court administrator that basically said that I wanted to inform the court of my medical situation before serving, I have POTS, NCS, and panic disorder, which means my heart rate and norepinephrine levels are too high so I may faint, the odds of me fainting are significantly higher when I am forced to sit for long periods of time and if I do faint I will require immediate medical attention, I will need to have a bottle of water or sports drink with me at all times, and I will need to use the restroom approximately every 30-60 minutes. I sent it off this morning, so we'll see what comes of it.

I voted that it was my doctor who suspected POTS first, but that was after I had already seen who knows how many other doctors. At the time, a nurse had seen me after I fainted and hurt myself and had trouble regaining consciousness on campus and paramedics took me to the student health center. She checked me for a concussion and then told me to stop skipping meals (yeah right). I knew something wasn't right so I complained to the director of the center and made an appointment with a different doctor, who just by chance was a neuro who had done research on POTS and related disorders. I'd really like to see her again, but I can't even contact her because I'm not a student anymore and the health center office/operator won't put me through. Before that, though, beginning in middle school, I had been diagnosed with anxiety and panic disorder and put on various meds, none of which worked. I just started thinking of myself as a freak and tried to hide my symptoms as best I could. Even as a teenager I was sick of doctors dismissing me so I stopped complaining. I only went back to the doctor when I was taken there by the paramedics in grad school. At one point, I did a few months of therapy at the suggestion of a doctor, which, unsurprisingly, did nothing for my attacks. I know there are a lot of hypochondriacs in the world, but it upsets me that doctors don't take every patient seriously. I don't care if you went to medical school, I've lived in this body my whole life and I know it better than you do.

Wish I could help, but I'm on it in conjunction with Zoloft (an SSRI). I can tell you that it has helped a little bit with my fatigue, whereas the Zoloft alone does nothing for it.

Thanks so much for the replies, guys. MomtoGiuliana, I agree, it does sound like something that you would hear from insurance. I am going to start searching for a new doctor, but here in the rural south, it's not an easy task. Maybe a neurologist would be better than a cardiologist this time. It's certainly something I need to think about, because, MomtoGiuliana and SpinnyC, you guys have voiced things I've been thinking off and on for a while now. I will try to appeal to the court directly. I was planning on writing a letter, though, since the form I received said I would need a doctor's note for a physical condition that would prevent me from serving. I just assumed if I called, they would just say "Well then send a doctor's note." I can't say with certainty this would be the case, but you know how these things go. Or maybe I should just show up the first day and explain? The whole thing is just so frustrating.

I got a summons for jury duty in the mail last week, and I immediately called my cardiologist for a letter to excuse me. I am a fainter and I have my worst episodes when I am forced to sit in one place for a long time. However, I got a voicemail this morning saying that he wouldn't write a letter because there was no "cardiac reason" I couldn't do it and that I was "stable." Well of course I'm stable, otherwise wouldn't I be hospitalized?! The reason I'm doing better these days is because I am not forced to sit for long periods of time, I am not exposed to triggers like fluorescent lights and anxiety-causing situations, I can sleep as late as I need to when I don't feel well, and I can take breaks whenever I need to. I work part-time from home because I cannot physically handle a full-time job and I have a lot of brain fog. If I am forced to sit there from early in the morning until late afternoon, the only thing I will be thinking will be "Please don't let me faint, please let me get through this," not about whatever is going on. When I get even a little stressed, I am exhausted and can do very little afterwards. While it's true that I'm not just lying on the couch all day every day anymore, I do not think I am fit to do this. If I can't even sit through a 3-hour class without fainting or having pre-syncope and getting up every 30 minutes to pee, how am I supposed to do this? Not to mention it's a 30-minute drive from my house. I've been thinking of finding a different doctor anyway because whenever I see him (every 3-6 months) the meeting is 5 minutes TOPS. I wait in the waiting room for up to an hour and then he rushes me out the door. I get that I'm not a triple bypass patient, but I'd like to be taken seriously! I just needed to vent. I am freaking out about this, which is of course making me feel worse. Has anyone been in this situation? What should I do?

I am much better than I was in 2011, when I was first diagnosed. Last year I was slightly better, but this year more so. When I was first very ill, my meds hadn't yet been straightened out and I think the Florinef made me feel worse. I took it easy and let myself sleep as much as necessary and began to take walks in the evenings when it was cool. In the beginning, I was doing very little besides laying on my couch and trying to eat. I bought a recumbent exercise bike on Craigslist and started doing that for 30-40 minutes a day, sometimes using 5-lb. hand weights at the same time to build upper body strength. Gradually I added in other exercise DVDs and drank tons of Vitamin Water and Gatorade. Every morning when I woke up, I would drink almost a whole bottle. At that time I was working from home about 15 hours a week. I got my meds straightened out for the most part, on relatively low doses of Zoloft and Wellbutrin, and I try to let myself relax when I'm feeling bad. I don't travel as much as I used to and I spend most of my time at home. I changed my diet to eat lots and lots of fresh vegetables, berries, bananas, beans, plain Greek yogurt, quinoa, and rice. I have really cut down on my sugar intake, too, and I take a vitamin B supplement. I also switched from artificial drinks to coconut water and more natural electrolyte tablets in water. In the past 6-8 months I have been working more on strength training and working up to jogging at the park. I have lost weight and have more muscle definition than I have ever had in my life, which is a nice bonus I exercise 5-6 days a week, doing a variety of activities. I push myself to do some sort of physical activity, even when I don't feel so great. Even slow movement is better than nothing in my opinion. I am still not completely better. I still have long periods of daily headaches (coathanger area), I get dizzy a lot, I go through periods of insomnia and nausea, I can't get rid of the bloating, I can't stand in one place long, and I can't hang on to fluids very well. Going out for lunch and shopping with a friend wears me out and I have to pretty much lay on the couch the rest of the day. But still, comparatively speaking, I am doing much better than before.

Not sure what type of POTS I have, although my dr. has indicated that it's probably hypovolemic. My body temperature usually hovers at the upper end of 95 F and my feet are always cold. Hands usually are too, although when I exercise my hands swell and get red and itchy. I usually sit with my feet tucked up under me because they get so cold.

Let's hear it for the INTJs! lol. That's so cool! All those endless hours in closet-size practice rooms... don't you miss it? XD

I'm INTJ. Definitely an introvert, definitely shy, definitely type A, and I fit most of the other stereotypes. I'm female, I'm on the tall side (though not super tall), thin, fair, I'm a classically trained pianist, I studied piano performance in college, I've always gotten straight As and pushed myself to perform better. I also play several percussion instruments, guitar, and ukulele. I took supplemental visual arts classes for years. I'm employed as a linguistics researcher and copy editor, so perfectionism is kind of a way of life for me. Relax86, I think you're probably right-- type As are more apt to look for answers than just accept the diagnosis and deal with it as it happens. I'm sure introverts are more likely to use forums as well because it's not a classic high-pressure type social environment although it is a good way to interact with similar people.

I'm not a doctor or nurse or anything, but I believe this to be true. Before I was diagnosed, doctors said I just had anxiety and panic disorder, so I was in therapy (classic talk therapy) 1-2 times a week for several months. I never had any improvement from it. I think my anxiety is due to POTS. My theory is that if I get even a little nervous or feel uncomfortable because a room is crowded or there is florescent lighting or something, my body misinterprets it and sends a flood of adrenaline, at which point my HR goes crazy and my BP bottoms out. I work from home now, but if I get an e-mail from my boss that worries me even a little, I still have this reaction. In grad school, I was to the point where I would have to leave class 1-2 times per session because I would have an "attack." I also can't do deep breathing exercises because I get so light-headed. Working from home has been my saving grace. I don't think I would be able to last more than a couple of months at an office job because of anxiety, fatigue, and brain fog. And of course the brain fog and fatigue make me feel bad about myself, which makes me more anxious... the POTS vicious cycle! Anything social, though, is really hard for me. Usually I can do it for a few hours and keep the anxiety at bay, but I feel awful for about a day afterwards.

I don't have Lyme, but I regularly have to battle fungal infections like yeast infections and oral thrush/perleche. The best things I've discovered are probiotic supplements-- the refrigerated kind you get at places like Whole Foods, and plain yogurt. I can keep the perleche under control by dabbing plain yogurt on it a couple times a day. I wouldn't get the flavored yogurts, because fungal infections thrive on sugars. I have also found that vitamin B supplements help.

I'm 28 and I didn't have the vaccine. I got chicken pox in 3rd grade, pretty bad case, but I haven't had shingles (knock on wood )

I'm on Zoloft (75 mg) and Wellbutrin (37.5 mg). I was previously on 100 mg of Zoloft, but since adding the Wellbutrin I've been able to step off it a little bit. The Zoloft keeps me from fainting and helps to stabilize my blood pressure as it was super low before. The Wellbutrin was added to fight fatigue and help keep my weight steady because the Zoloft was preventing me from losing any weight at all no matter how much I dieted or exercised. I've been pretty happy with this combination, although the Zoloft was AWFUL to get used to. Edit: By the way, I have POTS and NCS/NMS.

When I have a flare for a few days or an acute episode (what I used to think were panic attacks) I feel very nauseous. In fact, today I'm going through a flare-up and I've had that "hungry-sick" feeling all day on top of the other symptoms. I was also misdiagnosed with anxiety and panic disorder for quite a while before I started having major syncope episodes. I also have shortness of breath. My doctor told me my lung capacity and strength was borderline asthmatic, which I never suffered from as a child or anything. It is definitely scary sometimes. I drink a lot of herbal ginger tea, called Ginger Aid, which I get at Whole Foods, and a similar herbal tea called Stomach Comfort.

Yes. I can hit 195+ way too easily. I get to 150+ doing my stationary recumbent at 15 mph with moderate resistance. My cardiologist told me I have to stop letting it get above 180, so I've switched to walk/jog circuits and I avoid jogging uphill. I also have been modifying my cardio at-home exercise (stuff like Bob Harper Body Rev dvds). I am not a beginner at exercise, far from it, but my resting heart rate never seems to go down (I'm usually in the 70s) and neither does my exercising heart rate even though I work out 5-6 days a week doing jogging, speed walking, hiking, yoga, strength training, stationary recumbent bike, etc., and I'm well within a normal weight/BMI range. I wonder if lowering those numbers is impossible for some of us, or close to impossible. I asked my cardio what HR I should aim for when working out and he said "Oh, probably somewhere around 120." Sorry buddy, I hit that just standing up and walking across the room.

What a great list! I want to print this and flash it every time I have to explain this illness, ha! I checked probably 3/4 of the symptoms listed. I agree with above posts, I'd like to see night sweats added. I would also be interested to see how many experience extremely fast HR, like 180+

Yola, I'm scared of the long flight, too. I did a long haul flight from Tokyo to the USA and it was pretty bad. I have been feeling better and I'd like to go this year but I don't know if I have the courage. I hope you are able to! I would be interested in seeking treatment in Japan too, or at least getting a consultation. I've been researching a little bit and I've found the names of a couple doctors in particular who seem to be like the Dr. Grubbs of Japan, haha! Of course I wouldn't know where to start though since I don't pay into the national healthcare system there. At least if either of us go, it's a comfort to know we'll be taken seriously if we have to go to a hospital there. Interesting conversation about language. I have a graduate degree in linguistics and I'm a linguist by profession. And I also studied Russian in college. Seems like many of us have that language in common to some extent! Neat! I also speak a bit of French, and a little Korean because I lived there for a while. I don't know anything about POTS/dysautonomia in those languages though.. anyway I would avoid the Korean hospital system as I was not very impressed with my experiences there ^^;;