India

At the college at which I teach we give students incompletes (an "I" appears on their transcript) until they can complete the work for a course. Thus, I have a couple of students with medical problems this semester which have prevented them from finishing a couple of assignments. They will therefore finish up the fall semester in the spring. When they've finished, I will change their "I" to whatever grade they ultimately earn. If your daughter has completed the majority of the work for the semester, there should be no reason not to give her an incomplete. But incompletes are generally only given if most of the work has been completed in the allotted semester. Beyond that, unfortunately, I agree with Lauren that, insensitive as the Prof may be, I don't think he is breaking any laws. ADA laws at schools only require the professor to make accomodations that are specifically mandated and which should have been communicated to the professor by student services, or whomever is responsible for enforcing ADA laws at the college, at the beginning of the semester. I get notices at the begining of each course requiring that I give students double or time and a half for exams etc. He should have received such notification. But he is not required by law to go beyond that. Of course, there's the law and then there's the spirit of the law which it seems he doesn't quite appreciate... Commiserations, India

I don't have POTS symptoms continuously. They wax and wane, ebb and flow over the course of hours, days or months. But when I am about to get a really bad attack--an autonomic storm I think others call it--I get certain "pre-symptoms" or warning signs. Usually it consists of me feeling physically quite good--no dizziness, palpitations etc. But mentally I feel very subdued. I get very quiet and reluctant to interract with others. A queer kind of stillness comes over me. It's almost like the calm before the storm, to use a cliche. Then about two hours later I will suddenly become very dizzy, often to the point of near syncope, my systolic or diastolic pressure will drop, I'll get tachy etc etc. That's just what happened to me this afternoon. I was sitting in a meeting and I felt very subdued, didn't contribute with anything like my usual enthusiasm (or rather outrage given what is going on at work!). I felt totally disconnected and indifferent. Then, once I got home, I started having the usual symptoms. The screen is circulating before my eyes as I type! Does anyone else experience this and/or can anyone explain this? As I get warning symptoms, I wish there was some way I could circumvent the coming collapse. India

Does anyone know if there is a connection between pain killers and POTS and/or heart beat irregularities? I ask because I have noticed that when I take Tylenol--usually two doses in a day, not just one--I have a great increase in "skipped" heart beats (I guess these are more properly called premature heart beats). I get these skipped beats without the Tylenol, but fairly infrequently (not frequently enough to be caught by the multitude of holter monitors and stress tests I have had over the years). It's much worse if I have to take Tylenol before bed: I often wake up and have these skipped beats and can only resolve them by sleeping on my back and propped up on a couple of pillows--lying on my left side makes them worse. As I say, I can take a single dose of Tylenol and be perfectly o.k. It just occurs when the pain isn't resolved by one dose and I take a second. Part two of the question is that these skipped beats also seem to have got more frequent in the past few weeks, even without Tylenol. Could this be the florinef? I would hate to have to come off it as it is allowing me to be vertical a lot more than before I started taking it in August! Any ideas? India

I have similar symptoms and had a sleep study performed. Based upon the results, the neurologist concluded that I did not have apnea but something called UARS: Upper airway resistance syndrome. The existence of UARS, as I understand the literature, is under dispute: some experts believe it is a distinct syndrome, some believe it does not exist at all, and others believe it is merely a milder form of apnea. Either way, it is a syndrome that has only relatively recently been "classified." UARS supposedly differs from apnea in that there is a lack of oxygen desaturation found during sleep studies. Thus, although I would wake up gasping, my oxygen saturation had not apparently significantly declined. UARS results in repeated arousals due to increased negative esophageal inspiratory pressure. This can lead to feelings of shortness of breath according to my neurologist. Do you snore or have excessive daytime sleepiness? Do you wake up with headaches? Because these are other symptoms of apnea and UARS. I believe the treatment for both is similar and can range from breathing masks to surgery of the throat. I frequently have dreams where I am choking or where I am running and running and feeling very out of breath: these too are symptomatic of a sleep disorder. From other literature that I have read, POTS sufferers also have a greater tendency towards apnea than the average Joe; I don't recall why this was so. But it is worth getting it checked out. The following site describes some common issues in sleep disordered breathing: www.clevelandclinicmeded.com/diseasemanagement/pulmonary/sleep/sleep/htm Good Luck! India

When I first started getting tachy ten years ago, I immediately ceased drinking caffeinated drinks and switched to either decaf or caffeine free. Eventually, I cut out even the decaf, switching entirely to caffeine free. Well, every now and then lately, (like today) I have a craving for coffee and decide to indulge myself with some decaf. But it only takes one cup and my heart is skipping and racing all over the place. My question is, have I got more sensitive to any caffeine just because I have rarely touced the stuff in ten years, or have I just got more sensitive period? I know it seems like a petty question, but I used to love my coffee (and tea--13 cups per day girl at college in England!) and, even after ten years, it is something I absolutely crave! Should I just content myself with keeping full caff in the house and merely sniffing the bag from time to time? India

Jennifer, I've had numbness in my hands, especially at night. My doc sent me to a neurologist, however, who thinks it is carpal tunnel syndrome brought on by lots of typing. She's given me braces to wear at night and whenever I can in the day--of course, the irony is it is impossible to type in the dratted things! Anyway, the point is, your numbness may be POTS related or not. It's easy to ascribe ever little thing to POTS but it is worthwhile getting these things checked out as they may not be related and therefore there may be something you can do to alleviate the symptoms or even cure them! India

Like others who have posted, sudden noises, large meals, long journeys, caffeine, alcohol, and sitting in the sun too long are almost guaranteed to set me off. Stressful events do it also. I had to give a presentation yesterday and I thought people would be able to see my heart beating out of my chest. I left sweaty prints all over the lecturn and I felt decidedly woozy for the first ten minutes of my speech. I have hyperadrenergic POTS and this just adds to the normal anxiety anyone would feel under pressure situations like this. I hate it and I feel embarassed because I think people watching will notice think I am a total wuss. (especially as I am female and work in a male dominated field) But I've been public speaking for 20 years and it really doesn't faze me psychologically. It's just my body over-reacts to any little adrenalin surge. India

Without atenolol my tachy is about 180. With meds, my resting heartrate, even when lying down is 80-90. My doc wants me to reduce the atenolol to deal with occasional bouts of breathlessness I get. I can halve the meds for a couple of days but I guess when the reduced meds kick in I get awful episodes like I did the night before last when I wake up in the middle of the night, heart racing and feeling as though it is going to beat right out of my chest, nauseaus, shaking, and even more s.o.b.! In other words, right back to where I was before any meds were prescibed. Despite being used to these episodes, they still scare me because I sometimes feel like my heart is never going to slow down. But back on the meds, and the episodes decrease signficantly. India

"When I first got sick I was hospitalized in the cardiac ward of my local hospital. One of the nurses that took care of me guessed my symptoms were related to drinking/eating products with too much aspertane. He said a few years earlier, his wife suddenly began fainting. She'd been drinking a steady six-pack of diet coke daily, then when she switched to juice, she stopped fainting. He said he thought it was the aspertane that made her pass out." That's interesting. I stopped drinking everything with caffeine in it. I switched from diet coke to caffeine free diet coke (I know, why bother?). Stopping caffeine certainly helped with tachy symptoms, but every so often I get tachy even after drinking the unleaded variety of coke for several days in a row. Maybe it's the aspartame? India

Welcome Amanda! For years docs thought I had SVT also and I had an electrophysiologic study after twelve years to see if that was the case! (I presume this is what you meant when you said you were prepped for surgery?). Anyway, they discovered there was nothing wrong with the electrical pathways of my heart, I had the tilt table test and was diagnosed with POTS in January of this year. I tried lots of different drugs--all had yucky side-effects. Then three months ago the doc tried me on florinef. I was extremely reluctant to try it--like you, I didn't want the weight gain, I had enough ballast already! But three months into the drug, I haven't gained a pound and, like Evie, I feel so much better. I really hope it works for you too. But if it doesn't, don't give up because there are other treatments that might work. Best of luck, India

It might appear that the two drugs would somehow cancel each other out, but I think it depends on the dosage and how your POTS manifests itself. I too am on florinef (.1mg) and atenolol (beta-blocker--25mg). The beta blocker is a very low dose but sufficient enough to blunt the adrenergic excess that I experience when my body tries to correct for its falling blood pressure. If you have the hyperadrenergic variety of POTS, as I apparently do, the beta blocker is supposed to prevent too many tachy episodes. My doc also thought a BB would be good for me as I have a higher than natural resting heart-rate. I tried other drugs before this combo--midodrine, paxil, and beta blockers alone--without much success and sometimes with alarming side-effects! When I was on the atenolol by itself, I was very tired, and it did not prevent most of my POTS symptoms. Thus far, fingers crossed, the combination of atenolol and florinef has worked well for me. Florinef alone can sometimes cause BP to elevate too much, so I guess the BB has helped to prevent that from happening in my case. My BP has been stabilized enough that I feel a lot better after three months on this drug combo. Certainly though, as suggested, if you feel bad or experience side-effects from this combination of drugs, you should tell your doc immediately. India

In defense of my profession, and as someone who is a POTS sufferer and went through college with it, and as someone who has to deal with student illnesses all the time, I'd like to say that professors are sometimes just overwhelmed with sheer numbers of students. I know there is a common perception out there that college profs do little work and wile away their time in their ivory towers oblivious to the "real world" and "real work," but for most of us, that is just a pipedream. I have sometimes up to 120 students or more a semester and on top of that I have mountains of committee work, and my contract requires me to research and to publish. I constantly feel overwhelmed and it is very difficult to keep track of each individual student's needs, although I try my very best. I admit that some of my colleagues are "less than accomodating" to students, but they are in a minority. No college has a perfect system to deal with the multitude of needs of the student body. From a professor's point of view, personal contact with an individual student is a much more productive way to deal with health and learning issues. Also realize that professors are constrained by federal privacy laws. At least at a college level, parental involvement is not encouraged. Tough as this may sound, most colleges lay responsibility for dealing with educational and health issues at the feet of students and this is partly for privacy reasons: many a college has been sued for violating student privacy rights. Students are legally autonomous adults in college and no longer subject to parental protection or parental interference under the law. Legally I am not allowed to talk to parents about any aspect of a student's college life. This is incredibly tough for those of us who have to deal with health issues at college. But all I can say is that, the majority of professors out there are accomodating, and if they forget once in a while, it is certainly not out of any maliciousness. Sorry if this sounds defensive but I think we have to look at both sides of this issue to find a way through. India

Louise, At the college where I teach, Student Services is very happy to coordinate accomodations for students who have a diagnosed "disability." Most colleges have policies regarding accomodations that have to be made to such students under the terms of the Americans with Disabilities Act. Offices like Student Services correspond with professors on the student's behalf and explain the mandated accomodations that must be made. Thus there is no need for a student to approach a professor every time he or she has an assignment due or exam to take to seek extensions, extra time on exams etc. To qualify for such accomodations, however, I believe some sort of physical examination or testament from a recognized health care expert is required. I have found that students are often embarassed and/or very reluctant to take advantage of these services, therefore. But, from the viewpoint of a teacher, I think it is better for the student and better for the relationship between the professor and student if a third party intervene. Different schools probably have different processes for dealing with these issues. But you should certainly check out what accomodations OU can make before your daughter attends. India

Katie, If you have the references to those studies I would love to see them. As far as I know, and have read, and have been told by my cardiologist, florinef acts by increasing your body's ability to retain sodium. That's why florinef is not recommended for people with heart failure or high blood pressure and is recommended for people who have a "salt-loss" disease. Before I started on florinef, my cardiologist explained that some of his patients take merely extra salt tablets without the florinef to help their POTS. He implied that taking extra salt with florinef would probably not hurt and might even help someone who was otherwise healthy, but that florinef alone with a regular diet should be sufficient. It's my understanding that most westerners already consume too much salt in their diet anyway. I haven't increased my salt intake while taking florinef and it seems to be working just fine. Maybe others more qualified than I can shed light on how florinef exactly works. India

"One bit of advice I can give is as you increase look after your stomach. It made mine really bad and I never suffer stomach problems. The best thing I found to do is break your dose down to 3 times daily and only take after food." My doctor warned me that florinef could upset my stomach, but that's pretty much true of all medicines really. Of course, being the peverse person I am, I actually experienced an improvement in my GI system on florinef. I'm wondering if that could be because drops in BP completely screw up everything else in your body. Whenever I had an autonomic storm, my GI system would go haywire. I'm sure it was probably due to the extra adrenaline that was pumped into my system as my body tried to right itself (I have POTS and adrenergic excess). Having started the florinef, I now have fewer attacks and hence my GI system seems near normal! I should add that I DID NOT want to start florinef after reading such bad things about it on this forum. But I feel so much better since I did. I understand, however, that different meds are going to impact different people in various ways. As one wise contributor to this list said to me, "try it." I did and I am (so far) very glad that I did. I haven't had to miss a day of work since I started back in August (very unusual). India

I too have POTS and hyperadrenergic excess. So basically any stimulants make me much worse. I'm surprised that you can drink big chocolate milkshakes. I can't tolerate chocolate much at all. I sneaked a snack size Twix last night at Halloween and got shaky and my heart rate accelerated! I don't drink anything with caffeine in it, so no coffee, hot chocolate, caffeinated sodas, or tea (apart from herbal tea which I have come to tolerate--although I just found some caffeine free tea from Africa--Rooibos Tea--which tastes almost like the stuff I grew up on in England!). Heavy, large meals make me much worse, as a lot of people here will probably also testify. Alcohol in only very small quantities and very infrequently. Eating too much starch also makes me feel bad. I've learnt to work around these limitations, but I still REALLY miss my coffee! India

Not sure when my POTS started. I do remember feeling faint as a child after standing for prolonged periods of time. I remember being on the brink of passing out several times but never quite did. It was not serious enough to warrant trips to the doctor, though. I also remember one distinct occasion in P.E. when we had to take our pulses and mine ran very high. The conclusion of the PE teacher was that I was not "fit." That seemed to be, even at the age of 11, an unlikely explanation as I was very fit as a kid and on every possible sports team you could imagine. My health became much worse once I moved to the U.S. for grad school at age 21. The first doc I saw in this country accredited my fainting spells and rapid heart rate episodes to "hormonal changes common in women in their twenties"??? I do know that heat made it much worse and the humidity of Ohio, compared with the temperate nature of the U.K where I had grown up, may have made my episodes worse. As a northern European, I too am very fair skinned with green eyes. I am brunette, however, (that's where the Welsh blood kicks in). My legion of doctors seem less concerned about cause--most have said "we don't know and will never know"--and more concerned with treatment. This is probably because they are not "experts" (but then again, who besides us, is?) My neurologist had heard of POTS but said she had only ever met one case besides mine in the twenty years she has been practicing medicine. She did add, however, that symptoms in that patient got worse around about the same age as mine did and that maybe our etiologies were similar I was a breach birth and had breathing difficulties for the first 24 hours of my life. Maybe this is a factor? India

Aloha Jennymac and welcome, I had a similar experience when I came off Birth Control pills when my husband and I wanted to try for a baby: my POTS symptoms were much worse, so much so that we decided not to continue trying. I didn't know I had POTS then. When I started BC again, I felt a bit better but only after a few months. Birth control pills can escalate blood pressure. Maybe they were maintaining your BP and now you are off them your BP has crashed? Not sure whether this is a sound medical theory though as I am not a medical doctor. India

Persephone, My field is American history (goes down very well when a Brit enlightens Americans about the Revolution!) and I did my undergrad at the University of Durham and my Ph.D. in the U.S. When I was working on my Ph.D., which is a longer process in the U.S. than in Britain, as we have to do all this pesky coursework as well as the dissertation, it was a constant battle for me to just keep going. I wanted to sleep all the time, or I was having tachy and fainting episodes and no one seemed to know what was going on (I wasn't diagnosed until a few years after I finished my degree). I was lucky in that I had the best advisor who constantly buoyed my spirits by remarking he didn't know how I was managing to do everything in my condition! Without him and the support of my now husband, I don't know how I would have got through. But then, I didn't know of a great supportive forum such as this one. The problem with grad school, as one wise person once remarked, is that it is 5% intellect and 95% persistence. I think that anyone who suffers from POTS is, however, one of the most persistent and forebearing people on the planets, so I think this is going to help you finish up. My strategy was to just try and write a little every day, just to keep the illusion of forward progress alive: doesn't matter if it is a couple of sentences or a couple of pages. POTS is inertia causing enough as it is and I believe that we have to do everything possible to fight that. Every word you write is a small victory. And I think it actually helps me to exercise my little grey cells as much as possible: it's a distraction and I think anything that keeps your mind healthy can help your body do the same. Aloha and cheers, India

Persephone, I'm so sorry that you are feeling so bad and I'm sending out some Aloha all the way from Hawaii in the hopes that it will make you feel better. I've recently been put on florinef (fludrocortisone) and it has thus far worked well for me. I notice that your signature says that you are on midodrine as well. I had real problems with that, in fact, almost the same symptoms that you are describing experiencing on the florinef. I was completely shakey and could barely stand. I'm on the other side of the lecturn to you--I'm a professor--and while I was on the meds I had to grasp my table for dear life or sit down in order to get through a lecture! Could it be you are taking a combo of drugs that interact badly for you? Have you had problems with then midodrine before? I too had headaches when I first started the florinef, but they wore off after a while. I know some people get persistent head pains, however, enough to force them to stop taking the drug. My doc told me that the half-life of florinef (how long it stays active in the body) could be anywhere from 24-72 hours, so your shaking I suppose could be residual effects from the florinef as it has not cleared your system yet. I also find I cannot tolerate alcohol even in small amounts anymore (I grew up in England and went to an English Uni so I know how antithetical the idea of a "dry" three years is to a college experience!). But alcohol makes me extremely tachy, dizzy and messes with my BP. I believe that alcohol in combination with florinef can significantly elevate your BP: maybe that's making the shaking worse? (although it would seem to me that small amounts of alcohol would not have that much effect). I think from reading this site you can tell that different meds affect all of us in different ways and many of us have just had to grope our way towards improvement or at least a tolerable existence through trial and error and in spite of a deplorable lack of knowledge about POTS amongst some members of the medical establishment. I know that doesn't seem very comforting and I well remember how stressful it was to be an undergrad in Britain and to cope with feeling crappy all the time. I wish I had a magic pill to give you. Just know that we are all sympathetic and that you are not the first one to go through all of this. Aloha, India

The cause of my POTS is unknown, although I suspect I have had it most of my life based on recollections from childhood. However, after trying midodrine, paxil and other drugs to no or worse effect, I was put on Florinef two months ago. Despite my misgivings about this drug (see my earlier "freaked out" post!) I am feeling so much better. I have been "upright" for two months now and feel much stronger in general. I have "potsy" moments, but nothing near as awful as before: in June I couldn't get out of bed some days because of the awful dizziness when I was even moderately upright. I know florinef does not work for everyone, but (fingers crossed) thus far I am one of the lucky ones. So, for now, I feel sufficiently improved that I can say that if I am not totally recovered, I am feeling better than I have done in years. And this is a big victory for me. I like this thread. We need to share and spread some hope, however small the package is that it comes in! Aloha, India

Thanks Lauren, I too was dizzy a lot before the florinef and I had these momentary spells before that medication was prescribedtoo. So I don't think it is a side-effect of the medication. I am used to feeling light-headed for prolonged periods, but it's this momentary swooning that has me worried. India

I was wondering if anyone else has had similar experiences as I am having today and have had on and off for a while. It usually occurs while I am sitting down but beyond that, it is hard to explain. Out of the blue my head feels momentarily weird, almost as if it is about to fall sideways or I am about to suddenly faint. I don't get tunnel vision or blackness, it's almost like a sudden and momentary jolt in my head. I then feel very shaky, my palms and feet sweat, I feel light-headed and this sometimes just lasts for a few minutes, often for hours. It's happened to me twice today--usually it happens a couple of times a month. And both times it happened after a prolonged period of sitting. I've had an brain MRI and MRA recently and nothing turned up. So is this just a potsy symptom? I'm thinking it may be just a brief drop in BP. Each time I think it is a prelude to losing consciousness but it hasn't led to this yet. My dizziness has been much better recently--since I started on Florinef, in fact. But I do not feel at all well at the moment. Any ideas? Thanks, India

Hi, I can qcompletely understand your nervousness about the EP study. But maybe I can help put you a little at rest by saying I have had the study and I shared your anxiety before the test. My cardiologist suspected that I had POTS but also believed that that the source of my tachycardia might also be an AV nodal re-entry problem and that may be what Dr. Grubb suspects is going on with you. My cardiologist recommended the study as a way to rule out problems before he proceded to the tilt study test that confirmed that I had POTS. I think this is a pretty standard way of proceding if the source of your tachy episodes is in doubt. In my case, my doc told me that if they had found anything during the ep study, they would have done the ablation there and then, which makes sense. EP studies are costly and it takes a good deal of skill to locate the source of the arrythmmia, thus once it is found, it is better to deal with it right away. For me, the ep test ruled out any electrical signal problems with my heart, however, and this was very reassuring, especially after the positive tilt table test. For other people that I know have had the test and for whom an electrical problem was found, their ablations resulted in significant improvements in their quality of life. It really can turn things totally around for some people. The EP study itself is not painful. Before the test, they give you a shot of valium to relax you and then insert some catheters into your groin which will be threaded through the veins to your heart. It sounds bad but I never felt any pain throughout the whole procedure. Most procedures usually take only about an hour to an hour and a half. Mine was three hours as the doc wanted to be absolutely sure that I had no electrical signal problems. Being drugged up, those three hours went very quickly and I was surprised when the doctor told me how long I had been in there. I was fully conscious for most of the test--which is what had freaked me out beforehand--but I was quite relaxed throughout the whole process. The most uncomfortable part is afterwards where you have to lie perfectly flat and still for a few hours so that the insertion points for the catheter can seal and heal. My back hurt a little bit becasue of this but I really wasn't in any distress. You may get bruising at the catheter insertion points after the procedure, but for me, it was no worse than any bruise I've got from banging my leg on a table. I am glad that I had the procedure done. You should, however, as with any procedure, ask plenty of questions before you decide to do this. You need to feel comfortable that this is the best thing for you. Good luck, and if I can give you anymore "layman's" advice about the procedure, just ask. India