India

Aloha, It must be the bb's but sometimes I feel exactly the way you describe--heart pounding (so much that I think other people can see it!), shaky, stomach cramps etc, sweaty. We had a very small fender bender the other month, for example, and I was completely a wreck. But at other times when I should feel stressed, I feel almost numb--well, not literally, just kind of emotionally numb. I think I should be feeling the heart pounding and the sweating, but it does not come. I am remarkably, and almost eerily calm. I guess the varying reactions are just reflecting how my body has decided to respond to POTS that day! India

I've been on beta-blockers since 1994. First I was prescribed nadolol and then atenolol. My dosings range from 40mg to 25mg at present so not very high dosing. Higher doses made me feel very fatigued and I was on a higher dose when I was 40lbs heavier than I am now. I guess the weight loss helped lower my blood pressure and the doc thought it unadvisable to have me on higher doses of bb's. India

Dizz, I think I know how you are feeling. Over the years I have had episodes where my heart feels "disorganized" (that's the best way I can describe it). It seems to want to beat fast, and then seems to almost stop and jump about. In fact, I have been having these symptoms again for the past month. They seem particularly bad at night when I lay down. My doctor put me on a 24hour heart monitor, and, of course, I was fine that day. That was three weeks ago but the symptoms have not gone away. When it is really bad, I tend to sleep sitting up, propped up on lots of pillows. I find that, later in the night, I am able to finally lay down (or find I have lay down) and can sleep better. This doesn't always work, but it does sometimes have an ameliorative effect and my heart seems to get back into a more regular rhythm by morning. Like I say, this doesn't always work, but like you, I am at a loss for what else to try. Maybe your month long heart monitor may show something. My cardio has scheduled me for an Echo (another one!) and a stress test (another one!). I think she is really at a loss of what to do because she knows little about POTS or any forms of dysautonomia. Hang in there! India

I have similar problems. I sleep worse at night after exercising and better if I did little to nothing. Also, I have the same desire to sleep immediately after exerting myself. I thought that maybe exercising just before bed would therefore help cure problem number one. But it doesn't! I sleep for maybe an hour and then I am awake. Sorry I have no solutions, but at least I know that someone else has the same issues. India

Just a little over average height and just over my healthy BMI, so definitely do not fit the "tall and skinny" definition. In fact, when my symptoms started worsening was after I had lost 40lbs! May or may not be coincidental. India

Emily, I LOVE heating pads--I've got a herbal thing that you heat and reheat in the microwave. That, in combination with some pain killer soothes the cramps for me. My doc told me that taking painkillers BEFORE your period actually starts can help both alleviate pain during the period and its heaviness. Not quite sure how that would work. But she recommends Ibuprofen rather than tylenol. Don't know if you can manage it, but gentle exercise always helped me--I am not always able to do this as I get very symptomatic during my period. But if I am not feeling too bad, a gentle walk does help. I've also found that cursing helps...But, as I am supposed to be a responsible adult, in charge of setting an example for impressionable youth, I am not going to officially recommend that India

Cardiatech, It's curious that your doc won't do an ep study and did the TT first. My doc insisted on doing the EP first and then, when that ruled out any conduction abnormalities, he did the TT which he interpreted as positive. He argues that POTS is a kind of last resort diagnosis due to its rarity (I would say underdiagnosis, but let's not quibble). My symptoms started out like yours--I was tachy for years without really any other symptoms. But I was tachy both standing and lying down. I was put on a moderate dose of BB's and this worked for a while. Later I began to get the fainting or near fainting and all the other symptoms in addition and was finally diagnosed 15 years later with POTS. Even that diagnosis has been disputed by some docs: It took 20 minutes before my BP crashed and my HR went up on the TT. (BP down to 55/41 and HR up to 170). This seems to defy the typical diagnositc criteria of POTS too--in that the HR increase and BP crash are supposed to be more immediate upon standing. My doc, however, has diagnosed me with POTS and his prescription of florinef certainly did help. So I suppose I have to accept that, despite worsening symptoms. Anyway, don't know whether this rambling is helpful or not. Really I just wanted to say that I share your frustration: I am sure many of us took years, even decades to get some sort of treatment/answer. So, just keep at it and solidarity! India

BIG CONGRATULATIONS! What an awesome achievement. Much Aloha! India

Emily, Strange that you mention Folgers because I caught the tail end of a piece on CNN today--it was going along the ticker on the bottom of the screen--that said that the Folgers instant crystals was really the only "decaf" coffee that had a very small amount of caffeine in it. Decaf just seems to mean that some of the caffeine has been taken out, I guess, as opposed to "caffeine free" which means no caffeine at all. I presume food labeling standards for caffeine are the same as those for fat and calories. I think I read somewhere that you can list a product as calorie free or having zero calories if it has less than 5 per serving. And similarly you can list it as having no saturated fat if it has below a certain amount per serving--truth in advertising eh? So labeling a coffee decaf could mean different coffees could have a whole range of caffeine amounts in them. Did anyone else see this report? Is Sanka completely caffeine free? Is it really coffee? I too have absolute cravings for coffee: I often visit a coffee house around campus with students or colleagues and it drives me nuts. But luckily they serve some good caffeine free tea--African Autumn (a rooibos (?) tea) which is quite pleasing. Ultimately, I have to remind myself that giving up caffeine is just a small thing compared to what other people have to avoid, and I have the widest range of herbal teas outside of Twinings! India

Can't tolerate caffeine or chocolate at all and, boy, do I miss it! Not sure whether it is the POTS or the fact that I have adrenergic excess that is the problem--I suspect the latter. But I haven't drunk coffee or cafeeinated tea for 15 years. I had terrible headaches once I stopped it too--I was a bit of a caffeine junky I suspect. The worst thing was giving up my English cup of tea--my Mum used to send me English teabags in the mail all the way to Ohio when I lived there. It's got less caffeine than coffee, but I still can't tolerate it. Regarding the girl who gave caffeinated coffee to decaf patrons: I seem to remember a case around about 10-12 years ago where a bloke with a heart arrythmmia sued a coffee shop for serving him caffeinated coffee instead of decaf. It nearly killed him. Doing stuff like that is certainly no laughing matter and it distresses me no end when I see this on t.v. sitcoms. I am sure that I have been served caffeinated coffee instead of decaf in the past. I have just given up ordering decaf altogether when I am out because I don't trust what I am getting. India

I get the same thing after having my head tilted back at the salon. I also get the same feeling tilting my head back to look in my cupboards or to view a movie screen as well--I have to sit well back in the movie theater and never in the front row. I have read that those sorts of motions are difficult for people with POTS to tolerate. India

I get the really hard heartbeats too. No necessarily fast, but just hard. I can see the left side of my chest actually moving with the beats often too. I'm hoping that this holter monitor shows something. But I am only getting one for 24 hours and I have to wait until next Tuesday. I've had echoes and EKG's and thalium stress tests and the works and nothing has showed up apart from mild mitral valve regurgitation. But on some of my (many) trips to the ER "irregularities" on my EKG have shown up, but then on follow-ups have been absent, and no one seems to have any explanations for the irregularities. I can cope with the fast and pounding heart. But it is the irregular or skipped beats that are more frightening and make me feel worse. It's almost as if it sends my whole cardio vascular system out of whack, even when the irregular beats stop, and then it takes hours or days to get back to feeling "normal." Thanks for all your input guys, India

Aside from the increased heartrate, does anyone get other heart irregularities or are these generally not considered a part of POTS? India

Many people on this site use the word "tachy" to describe their symptoms. What does that exactly mean to everyone? One of my initial POTS symptoms was tachy episodes, which for me meant an extremely rapid heart-rate that came on suddenly. Atenolol has helped reduce those incidents. Now, my heart-beat irregularities feel more like "missed" beats and they seem to be getting worse. Oftentimes I feel like my heart has actually stopped and then it starts again, oftentimes with a thump so hard that I can see my chest move. Or my heart flutters in my chest as though it is not completing a full beat and then suddenly resumes a normal pattern. I used to get both of these latter irregularities once in a while, but now they are more common and over the past two months have become frequent to the point that the skips are happening countless times a day. I called the Doctor today and she has advised me to up the atenolol--something I am dubious about given my low blood pressure issues--and she has ordered (another) 24 hour holter test for me next week (I have had about three of these already and only one has ever shown anything, usually because I have to wait weeks for the holter and by then my symptoms have abated--only to return weeks later!) What are other people's experiences with heart beat irregularities? I have had an EP study which was able to replicate nothing. Is it perhaps more than coincidental that these other irregularities have only emerged since that EP study--it was three hours long!? Or am I being paranoid? Anyway, these irregularities are very worrying. Also they seem to happen more at night, and more when I am laying on my side than on my back. I hate sleeping on my back and never feel rested after doing so and that may be compounding the problem. India

I know my previous specialist made distinctions between OI and POTS and indeed had many different names for varying manifestations of similar symptoms. Don't know whether that was his personal opinion or reflected the literature. What I've read seems to suggest that different researchers have different opinions on the matter. Either way, I wish my specialist hadn't left the islands because he was the ONLY person I have seen here who any idea about what was going on with me. India

I've got to respectfully disagree with the last post. If you read through the postings of people on this site, you will see how long it took us to get diagnosed, how often our complaints were misdiagnosed, and how often, sadly, our complaints were dismissed as "female complaints" or "emotional issues." It is therefore "logical" that there are many people out there with POTS who do not have an accurate DX. POTS, in this fashion, is not unlike many other diseases, that many people in the 21st century now have, but were previously undiagnosed, unrecognized, and untreated in previous centuries, but that is not to say that they did not exist. As is also evident from this list, POTS manifests itself in many forms--some more severe than others. I myself, for example, rarely get nauseaus. Others are constantly feeling sick to their stomach. Moreover, many people on this list operate in the world--at its modern pace--without complaint but symptomatic, as do many other people with chronic health issues. The world continues to revolve even though probably the majority of people in the world have some sort of health issue. So, while I would agree that POTS and OI are probably confused oftentimes, I also believe, given the history of other heretofore unrecognised diseases, that POTS is more widespread than we think and more widespread than the medical literature would indicate. Medical literature, like any other literature, is subject to its "fads." One person's research drives another person's research and low and behold, diseases, like depression, for example, are suddenly recognized as much more widespread than previously assumed. India

It took me ten years or so to get diagnosed. And since I have been diagnosed, I have only found two doctors out of the wealth of physicians that I have seen, who know anything about the condition. It makes getting treatment very difficult. On one occasion, I passed out at work and my boss put me in an ambulance and sent me to the emergency room. The ER doctor there, not only had never heard of POTS, but he thought it was something I was making up or had "misheard." My husband, who had rushed to the ER to be with me, was absolutely furious with this guy who was treating me like a complete idiot/hysterical female. He could see that my BP was low--that's not something you can fake. But he was so cavalier in his treatment of me, that my husband demanded to see the ER chief and made a formal complaint. Of course, nothing ever came of it or the letter that we wrote, politely suggesting that maybe some education in this condition might help. Having this problem and dealing with people who don't know anything about it can be exhausting for everyone involved and just compounds the illness. It's very hard for me to explain for my family--who live 9000 miles away and don't see me that often--what I am going through and that I just can't do normal things that I used to do without a thought. But, I have to keep telling myself, as Dionna said, that even the so-called experts know precious little about the condition, and that there are precious few experts out there. So how can a layperson empathize with what you are going through. On the lighter side, when I tell people I have POTS, they often mishear and think I have said POX! That may explain my non-existent social life! Chin up! And rant all you want--it's therapeutic! India

I have no idea what caused my POTS either. I do remember having symptoms like this for as long as I can remember, though they were never as severe as they suddenly got in my 20's. Without atenolol I have a very high resting heartrate and that makes my response to the drop in blood pressure even more alarming because my heart goes into overdrive trying to get my BP back up. The atenolol takes the edge off that but it also seems to be increasingly working to lower my BP! It's a vicious circle! Your heart rate might be high upon standing without the low BP because your heart is doing its job to keep your BP up--this is the way that my EP explained it to me, anyway. My BP can be low standing, sitting, or lying down, although it is generally worse upon standing. One day I can feel relatively fine and dandy, and the next day--without any change in routine, eating habits, or stress--I can feel like the bottom has completely fallen out. I can feel crummy with or without a low BP, but I generally always feel crummy with a low BP. It's very frustrating, I know, not to be able to pinpoint the cause of all of this disruption. But, as others have said, not being able to identify the cause is something a lot of us have in common. Perhaps it's not the sort of sister/brotherhood that you want to belong to, but at least you are not alone! India

Over the past few days I have noticed a new and alarming symptom. I am just going about my daily business, not necessarily feeling crummy, and all of a sudden I will gasp. Today it happened out of the blue as I was driving my car home from work. I felt quite o.k before and I did not notice any heart beat irregularities. But I just gasped and made a noise as if my air supply had suddenly been cut off. I have awoken from sleep with this symptom in the past and had a sleep study which ruled out apnea. Does anyone have any idea what is going on. It is quite worrying. My chest feels kind of hollow in the center after it happens. But I don't feel dizzy and my BP seems o.k. All of these new things keep happening lately and it is very frustrating because I was feeling better for about a year after I was put on florinef. Other meds include Atenolol which I have taken for ten years, clonazepam for about two years, and birth control which I have been on for many, many years. Any advice would be appreciated. India

Sue, I'll just add to what other people have said and agree that the randomness is the most frustrating part. I do find that bad episodes correlate with my periods, however, as you seem to find too. That is when I am most exhausted, most tachy, and most out of it. I too find my symptoms getting progressively worse and I am just out of energy most of the time. I went to see the doctor who is treating my husband for fibromyalgia--and has worked wonders for him because he actually understands the problem and doesn't dismiss it as a "catch-all" diagnosis--and he thinks I may have CFS as well. Before I can receive treatment for this, he has to go through my regular PCP, who is not very broad minded--nice chap, but doesn't think outside of the box and knows nothing about POTS. I believe that many people who have POTS also have CFS and/or fibromyalgia, so finding someone who knows about that link may help you. Good luck and know that we all sympathize with you. India

Hi Cindy, I teach at a university in Hawaii and I am probably not on my feet as much as you. But I find that even 55 minute or 90 minute classes are a challenge. I usually try to move around as much as I can to keep the old BP up. If I stand still for long periods I get the swoons! If standing still, crossing your legs can help, although it is difficult to stand like that. Tipping my head back to write high up on the dry erase board can make me feel woozy so I try to avoid that and write at eye level--luckily I am not too short and my students can see my writing. I try not to sit down during class for several reasons. First, I can't teach effectively like that. Second, when I get up I feel even worse! and third, I get dizzy sitting down for long periods of time without moving too. You have to find out what works for you. Obviously sitting down works for other people. But I have found trying to keep active in class works best for me. Luckily, I have only had to cancel a class once in the middle of a lecture when I felt just too awful to go on. But my students were very understanding and e-mailed me afterwards to check that I was o.k. As my husband keeps telling me, you don't have to be superwoman--although her support hose might have helped! Good luck India

CONGRATULATIONS! This is a phenomenal accomplishment and you should be super proud of yourself. What an inspiration to others! India

I feel just the same. I get overwhelmed in noisy, crowded shopping malls and stores, airports, or just about anywhere where there is a lot of noise. Even before I was diagnosed with pots and I started having severe POTS symptoms I was like that. I am not sure if this was an early POTS symptom or is unrelated. But I do know that now overweening noise brings on sweating, nausea and dizziness--all of the POTS symptoms. My husband, who has fibromyalgia, is also super sensitive to noise as well, and visual and aural overload is apparently a common complaint amongst people who suffer from that affliction. To my knowledge, a lot of people who have POTS also have fibromyalgia. India

I can totally relate to all of your symptoms. And they seem to come and go for me. I agree with others that florinef has seemed to make the symptoms less common. But I still go through patches when these symptoms flare up again--had several episodes like this over the past few nights, in fact. It seems to be sometimes linked to my menstrual cylce, and sometimes linked to periods when I am under a lot of stress. Other times it just seems to come on out of the blue when I am feeling generally ok. I had a sleep study and no apnea was found, although I do have something called upper airway resistance syndrome which I guess is in the apnea family. Not much you can do about it save nose strips--which don't work--or more drastically surgery which I have been told is probably not appopriate in my case. It may be worth while getting a sleep study done. I know I tell myself this all the time and sometimes it works and sometimes it doesn't, but stressing about the symptoms will inevitably make them worse. I have found in the past that exercises that require breathing control like yoga (which I am not flexible enough to do) or pilates (which is much more manageable for me) help a bit. Other than that, I can only offer the comfort that I have had the same symptoms for years and they wax and wane and I sympathize with what you are going through. It can be very scary. India

OLL, That's interesting what you say about the connection between weight loss and these episodes. I lost about 40lbs and my symptoms have gradually been getting worse since then! I also have sinus problems and have wondered if they contribute to these episodes or just the general feeling of dizziness. It seems horribly ironic to do something seemingly healthy for yourself, like lose weight, and then to be "punished" by having these new symptoms! India