India

Thank you all for your responses. My cardiologist just sent back a terse "I have no idea" in reply to my query! It didn't inspire confidence. Thanks Flop for the information about different corticosteroids. That clarifies things a bit. What you read on the web is often just a very blanket description. I will keep you all apprised of the trip. 16 students in Vietnam. Yikes! India

My POTS and adrenergic excess are well controlled by a combination of Florinef and Atenolol so I am fortunate enough to lead a largely normal and active life. Thus, I am supposed to take a group of students to Vietnam in June of this year. I am somewhat trepidatious about this--for many reasons: the length of the journey, the heat etc etc. But I am determined to manage. My biggest issue or concern before the trip is with vaccinations. My university employer wants me to get the recommended vaccines for Vietnam which are HEP A, Typhoid, and H1N1. I have read on the web--and on the NIH website inparticular--that florinef and vaccinations do not mix and to not have vaccinations whilst on Florinef. Can anybody enlighten me as to 1) whether this is true? 2) if they have had any positive or negative experiences with these or other vaccines while being on florinef, and 3) if there is a contraindication, can anyone tell me why? Thanks, India.

I can tolerate one drink at night on occasion, maybe two. Sometimes I get symptoms, sometimes not. But I absolutely cannot drink in the middle of the day--heart races, heart skips, heart does funky things. Especially cannot drink when it is hot either. Generally, like others, I tend to avoid it unless it is a special occasion it's just not worth the POTS "hangover". India

Wow. I've been having exactly the same symptoms. Particularly if I wake up in the middle of the night after a few hours sleep. I don't feel weak on one side, I just seem to list on one direction! It's very disconcerting. Like you say, everything is working, but you are just off balance. India

Like a lot of others, it really depends on the day. Sometimes I cannot do anything even mildly strenuous and even standing or walking around in front of my class brings on the dizzies. But, when I feel good, I go with it. Generally I walk a lot: am now up to about three miles in 45 minutes which my Doc reckons is pretty good. I am thinking of joining a gym. But I don't want to do heavy weight training as that seems to make me more symptomatic. I've found pilates is good too which I can do for about 30 minutes and then get up very, very slowly. I find the breathing control that comes with that is helpful--probably more to do with the stress release than anything else. Overall, I think I feel better because I feel those endorphins pumping through me and I seem to have some muscle or body memory that goes back to the halcyon days before I got really symptomatic and I was very fit and exercise was almost like a drug. Incidentally my doctor just gave me a copy of a study stating that exercise is just as powerful as many anti-depressents! India

I don't usually feel too dizzy after getting up either. But when I do, I try to do a little bit of exercise, as far as I am able, to get "things moving." Interestingly, I have the same experience that Lina has: if I sleep late or too long, I feel much worse and it also seems to bring on my palpitations too--skips, especially. Again, getting upright and getting moving seems to help. I try to do as much exercise as possible, especially things that strengthen my legs. I too keep water by my bed to keep hydrated at night. Good luck! India

Have to agree with everything flop and pat have suggested so far. I find it is especially important to keep hydrated and to remember to eat regularly. As a teacher, I can't really eat in class, but if I wait and eat a large lunch I feel much worse in the afternoon. I try to sneak snacks throughout the day. I also find, although I do not recommend this if you are really hyperadrenergic (and I am hyperadrenergic but I know what I can tolerate) that a little bit of chocolate helps--physically and psychologically!!! Seriously, the caffeine bump does help. I cannot drink coffee but I know some people say that it helps too. I cannot stay sitting for too long either--which is problematic as a lot of my job also involves being behind a computer or sitting in interminable meetings. I try as much as I can to take stairs at work instead of the elevator--it's good to try and strengthen your legs to stop pooling. Otherwise, I just take one day at a time. I can go for weeks and feel good and then for months and feel dreadful even though I am doing the same thing. Good luck! I have to work to, but I seriously think that it is good to get out if you are able and I feel lucky that I can work. India

Like Tammy and Dawn, I can't do caffeine at all because of hypoadrenergic excess and tachy probs. I eat chocolate on occasion because it makes me feel good but too much is very bad. I have to balance short term happiness with longer term yuckiness! The tachy can get very bad and outweigh any benefits it has on my POTS symptoms. I haven't had caffeine for over 15 years (people are always shocked when I say this!) and I don't even have decaf anymore either given that studies of decaf coffees suggest that some of them still have a high amount of caffeine. (Folgers decaf crystals are apparently the lowest in caffeine-but always check the label). I occasionally drink Sanka for the "illusion" of coffee! As others have said, it's a very individual thing. India

Hi! I can sympathize with your plight: you'll see that I have posted on similar issues in the past. You mentioned you had tea and coke. Was it caffeinated tea and coke? I get similar symptoms and anything with caffeine increases the episodes. I haven't had caffeine for 15 years!!! (how do I cope?) I sneak a bit of chocolate now and again, but too much also causes symptoms. Of course, I get the episodes without caffeine too, but cutting the wonder drug out did seem to help. I teach college, and, although the university has a policy against drinking in class, I allow it, largely because I need the hydration too. You might consider approaching your professors to explain: we are human! Good luck with the docs. India

Absolutely worth it! And it won't stop me embarking on similar trips although I will be extra cautious. India

Went to see the cardiologist and had a series of blood tests done. Potassium and magnesium are fine and she sees not reason to take magnesium supplements. However, she does believe given my TSH reading that I have thyroid issues, but probably subclinical hypothyroidism. Can this cause PVC's? My major concern, is that she has referred me back to my primary care physician for this and I have had similar readings before on my thyroid and he has decided that no action is necessary! I also mentioned to my cardiologist that I cannot breathe properly lying on either side at night--much better on back. And that if I lay on my side it feels as though my lower chest upper stomach area is full of pressure and it causes the skipping sensation, sweating, dizziness, nausea. She just looked puzzled and said she didn't know what was causing that? Any ideas? Because I know that not being able to sleep makes the skipping worse in the day and it's all a vicious circle. I have to go to D.C. (from Hawaii, my home) in a couple of weeks for work. I am dreading the long trip and being away for two weeks although I welcome the cooler weather which seems to make me less symptomatic. But I want some sort of answers before I go. I know I sound impatient, but 17 years of waiting for answers is trying my patience Any advice would be so welcome. India

I get this too if I have a really hot shower and if I already feel pretty symptomatic. Like the others said, it is partly probably to do with standing up in the shower. But I think it is also the heat of the water causing vasodilation. I get the dizzies if I have a hot bath too. My solution? Take cooler showers. My husband always shouts at me as I get into the shower on particularly symptomatic days "don't have the shower too hot!" It's a bummer as I love hot showers but keeping the temperature cooler really does seem to work for me. As others suggested, if you really feel on the point of passing out, get a shower chair--lots of hard tile in those showers does not react well with the noggin! India

I have been on beta blockers for years. I was on nadalol at first and then switched to atenolol because the nadalol made me extremely tired. The atenolol makes me a bit dopey too but more so at higher doses. I am currently on a very low dose--25mg/day--and this has certainly helped control the rapid heart rate. It's my understanding that beta blockers can, however, both help and hinder palpitations. While they help slow heartrate, some people experience more "skipped" beats on bb's. On the other hand, bb's are often prescribed to stop these sorts of palpitations and work well for some people. I think, as with most medicines, the reaction is very individual. Good luck! India

Thanks Tearose, I shall ask the Doc about magnesium. I have had a cold for the past few days and you may be right that this is causing added problems. India

I find peppermints help too--don't know why. For me, living in a year round warm state, keeping cool is important and not being afraid to invest in a/c is vital--I feel guilty about the environmental impact, but it allows me to function. Keeping ice packs and neck wraps in the freezer for hot days is also useful Being very careful to keep up my vitamins and iron if necessary before and during my periods helps--get very symptomatic during that time. Get a cat! I know it sounds odd and I know people are allergic to them, but all of my cats have been wonderfully empathetic and very therapeutic--will let me pet them for hours and the hypnotic and meditative impact of repeatedly stroking a cat (and I think the purr) is truly a great destressor sometimes! On the flip side, she does decide that she absolutely must be fed at odd hours of the early morning and that can be stress inducing, but all in all..... Be well, everyone, and think good thoughts. Aloha, India

What is the connection between POTS and arrhythmias? I know that at first tachycardia was typically one of my symptoms--upon standing and as my heart fought to keep my BP elevated. But over the past few years I have been increasingly experiencing what people commonly call "skipped" beats--what may be PVC's. They have gotten very bad lately and have been occurring with more frequency and greater impact--breathlessness especially and then a general feeling of having what I can only describe as an "unbalanced" or "incomplete" heartbeat for hours and days afterwards even though my pulse seems regular. What are the mechanisms connecting POTS and arrhythmias of this type? Mine are sufficiently bothering me now and incapacitating me that I am going back to my cardiologist. (I do not hold out much hope, however, as she knows little about POTS and put similar episodes down to stress--how I hate, as a woman, that diagnosis!) Most troubling the "skips" are happening when I engage in any type of exertion or when I seem to be resting for an extended period of time. Very frustrating not to be able to either rest or exercise to cure the problem! What am I supposed to do? I've had holters and, of course, they never show up on them. But my husband can feel them in my pulse and sometimes even see my chest quiver when I have a particularly "fluttery" episode, so this is not only in my mind! Anyway, any insight would be welcome. Mahalo, India

Hi, I teach at a college and I agree with those who suggest you disclose. From a practical point of view, if you don't disclose the college may be under no obligation to make accomodations for you later. Given that I can see both sides here, as a fellow traveler and a teacher, I find that many instructors will be totally understanding and will make individual accomodations. Good luck with your studies. India

Aloha all, Woke up last night with a "new" symptom. Felt o.k. when woke up but had to get up to use the bathroom. When I got up I felt like all the balance had gone on the left hand side: I was staggering to the left. I've had this before when I woke up (generalized lack of balance, not one side) and it seemed to be a symptom of getting up too quickly and I shook it off very fast. This time, however, I could not shake it off. I could balance on my right leg but not my left. The curious thing was, I did not feel dizzy, just couldn't balance myself. This morning the balance issue is not so bad but I feel so dizzy that I did not go to work--very unusual for me. My question is, is it usual to get balance problems like this without feeling dizzy or is this something else? I was diagnosed with POTS about three years ago, also have hyper adrenergic excess. I am currently taking .1mg of florinef, 25mg of atenolol, clonazepam, and birth control pills. I have also recently finally got my weight down into what the NIH defines as a "healthy range" aka the BMI charts (5 foot 6 and 140lbs). Lost about 16;bs in the last two and a half months. Don't know whether any of this is relevant, but hoping for some insight from fellow survivors! India

Aloha all, I have been prescribed nystatin and triamcinlolone for a rash and possible fungal infection on my oh so sensitive hands. I am currently taking florinef. As florinef and triamcinolone are, I think, steroids of one sort or another, is this a good presecription? My regular doc was away and a locum prescribed this. I've checked the web for possible interactions and of course I am sure my pharmacists would have spotted any problem. But, the last time I went to the doctor for medication for severe headaches, he presecribed a drug loaded with caffeine which, in my hyperadrenergic state, is not a good idea. So, I am very wary about these things. Cheers, India

I just got back from a trip up Haleakala on Maui. I was fine driving up. Felt o.k. walking about at the visitors center at about 7000ft. At the top--about 10,000ft--I was fine standing still. But as soon as I tried to walk, even on the flat, I felt terrible. I know altitude impacts even healthy people, but the people I was with were fine. I was not dizzy and did not have a headache, but I felt as if my breathing was severely impaired. It wasn't so much that I was breathing hard, it just felt that my breathing was somehow stuck and I couldn't breath. I have had breathing problems at home before now, but no one can diagnose the problem. Is this POTS related? And if so, what is the mechanism that makes us extra sensitive to altitude? India

Like others have mentioned, sometimes I am o.k. with alcohol and sometimes not. When I am not, I am very bad and so I have just given it up entirely. For those who feel good on a couple of glasses of wine, maybe it is because alcohol can increase blood pressure. But my doctor told me that alcohol and florinef are not good combinations. Firstly, it increases blood pressure for those whose BP is already high--probably not many of us on this list. But secondly, alcohol has a potassium reducing effect as does florinef. I used to drink, now I don't people keep asking me if I am pregnant. Never know quite what to say to these folks other than a frustrated "it's none of your beeswax" as not only cannot I not drink because of POTS (and we all know how difficult that it is explain to friends) but my husband and I can't have kids. Some people seem so judgmental if you don't drink. What's up with that? India

60-80BPM is, I believe, considered "normal" for most folks who aren't professional athletes. I too have a low resting heartbeat in the 50's sometimes, but my PCP (non-cardio guy) says that no cardio doc is going to get excited about that (whatever that means). I am on BB's too and if my HR drops into the low 50's I generally feel worse. I feel better if I can keep it above 60bpm. But no one seems to think this is an issue. India

I had whooping cough as a child in Britain. I guess they did not vaccinate against it then, although I seem to remember getting vaccinated for just about everything else. My question is, if I've had it, do I have immunity now? Or is it likely to get me again? Do I need to get vaccinated? I remember actually feeling not to bad a child when I had it, but I certainly don't want it given my current state of health. India

Are you taking beta blockers? Very rarely BB's can cause hallucinations. The father of a friend of mine who started taking high dose BB's for a heart condition used to suffer from these. Here in Hawai'i, of course, everyone would say the hallucinations are really ghosts and that the way to deal with hallucinations/ghosts is to talk to them! I've got to agree with others that I suffer from similar visual disturbances too--often the fleeting, out-of-the-corner-of-your-eye variety. But I have also had more three dimensional and persistent "hallucinations" too--my local friends (non-medicated!) describe similar things--part of the culture here, and very interesting. Aloha, India

Brilliant news. Congratulations! Having taught for thirteen years, I can say that there are no "tricks" to getting over the fear of public speaking--the old "picture them in their underwear" was invented by someone who never had this fear and lived well before the PC age! As others have said, you get more confident as you go on and in fact, I have found, you probably will get to like the sound of your own voice TOO much and will have to make a conscious effort to shut up so students can participate! Seriously, the one thing my advisor in grad school told me that actually helped was to remember that I knew more than my students, I was the "expert." Even if I was assigned to teach a topic I did not have much speciality knowledge in, I still would know just enough more than my students to make me the expert. You also have to act like the expert and act like you are in charge. Teaching, I am told, is increasingly about IMAGE. (And, to a certain extent that is true--they should give us Oscars). But the key to teaching is enthusiasm. That is the one thing my students respond to and it is the one thing that conveys confidence in your material more than anything else. You will be fine and I am sure in fact that you will be great as you have such personal knowledge of what you are talking about. Good luck! India