India

Thanks guys, for your support. I like the description of the wave feeling like an elevator--that's just how I feel. It's been on and off all day today. I've felt a bit better sitting down, but if I sit down for too long without moving it comes on again. But if I stand up too long, it comes on again then. No win situation I guess. The doc put me on meclizine over a month ago but I stopped taking it because it did absolutely nothing at all. Like you say, it's just something that we have to struggle with and try and find a way to deal with it. I guess I am so frustrated because it seems to get worse for no reason. I can feel well or at least less symptomatic for days even weeks at a time and then, without varying my routine, bang, it all comes back again. I wish I could identify some trigger but I cannot. As I said, the thing that frightens me most is that over the past year, each recurring episode is actually worse than the last one. I feel like I'm on a downward slope and I don't know where it is going to end. I guess I'll have to switch to online teaching. At least I can sit down for that! Thanks again guys. It is comforting to know that I am not going through this alone. Cheers, India

Hi guys. I think this topic may have been brought up before, but I couldn't find it in the archive. I apologise if this is old stuff for some of you. I am increasingly getting these transitory moments of faintness: they literally last a couple of seconds. All of a sudden I feel like I am going to swoon--like those women in Victorian novels!--but I never really pass out. The feeling is different to what I get when I stand up or when I have fainted or near fainted in the pass: then the feeling comes on more gradually, things get dark, and I slowly feel myself losing consciousness. These transitory episodes come on very quickly and I don't notice any tunnel vision or most of the usual symptoms, it just feels as though momentarily all the blood has drained from my head. I was in the middle of lecturing this morning and about 30 minutes into my lecture it happened and then happened again about ten minutes later. I managed to keep talking about Ancient Greek democracy--what a trooper--but I felt really woozy for the rest of the period. Immediately after the tranistory episodes my hands and feet go all clammy and sweaty and I still feel very unsteady even though I am now sitting down after my lecture. I still have one more lecture to go and am really concerned because my husband is 9000 miles away in Britain at a conference and I am in Hawaii. I've had these episodes in the past but they have been months apart. Over the past few months I have had them with increasing frequency. I have no idea what brings them on. I felt very good this morning before work--no dizziness, no headahce, and quite happy for a change! Indeed I was thinking about how I haven't felt this good in a while. Sunday was a whole day without any symptoms! Obviously, I tempted fate. Usually I am o.k. when I am lecturing because I move around and cross my legs and try to keep things generally "upright!" I take my florinef in the morning and so you would think there is more of it in my system during the am and I would not experience these symptoms so much. I am guessing that these transient episodes are caused by a very temporary drop in BP. Do you think that is right. If so, what can I do about them? If not, what can be causing this? I also have them when I am sitting or even lying down. I have been checking my BP and it has been quite good lately (100/60) but I have dizziness sometimes all day despite a good BP and these transitory things are increasing. All my blood work checks out fine--iron etc. I've had a head CT and MRI about a year ago because of headaches and they checked out fine. I am just so afraid that I am on a downward spiral to the point that I will be unable to work. That is something that I literally cannot afford to do. Gosh, now I have to go and explain the causes of the French Revolution to a class of freshmen--enough to make anyone dizzy! If anyone has any suggestions, I would really appreciate your input. Vive la France! India

EXCELLENT! Your success boosts us all! India

I use Klonopin too. It's good at getting me off to sleep and initially it was great at helping me sleep pretty much through the night. But it seems to be getting less effective and although I can fall asleep o.k, I am now waking up at night several times. I am exhausted by the morning but still feel the kind of "hangover" effect of having taken a sleeping pill. My doctor says to take a higher dose, but it makes me feel bad the next day. I took Ambien--once. I had an awful experience, even at a lower dose. I couldn't tell whether I was awake or asleep, I felt I was hallucinating. Terrible feeling and so I stopped it at once. I thought I read somewhere--maybe on this forum--that Melatonin was bad for disautonomics? I guess, when I can, exercise helps. But if I exercise too near bedtime I am too wired to sleep. It's a balancing act as is everything with this condition. Good luck, India

I have tried compression stockings and they really help when I have to take a long flight--which is pretty much every time I fly as I live on a ****** island in the middle of the Pacific But wearing compression hose in Hawaii's hot temperatures just makes me feel warm and the warmer I get, the more woozy I feel! Catch-22! (And of course, they look oh so sexy with summer wear!) So, I think you are right, we will have to tweak my meds. It's just so strange that I feel so much worse all of a sudden. I am trying to keep well hydrated and eat smaller meals as I find that eating large quantities makes it worse. But I've got to say that I LOVE food and this is oh so difficult! I also have to keep telling myself that I am VERY lucky as I am not suffering as much as many people on this discussion list. I don't know how you guys do it and I am just thankful that I found this group as you are all very inspiring! Aloha to you all, India

This is very disappointing news. But actually pretty typical of the U.S. Lots of drugs seem to gain quicker approval in the EU than over here. (you might have been reading about the UVB blocker in sunscreen that is all the rage in Europe but hasn't been approved by the FDA yet, for example). I guess I am going to have to go back to my cardiologist and see what she thinks about lowering by beta blocker dose. I am really loathe to do this as I think I know a lot more about my condition than she does. It's very frustrating that many in the medical profession don't seem to take this condition seriously and thus research is not moving forward very fast. I can't tell you how many doctors I have seen who attribute my condition down to "hysterical, swooning woman syndrome." How very Victorian! Thanks for all the help people. India

Persephone, Thanks for your encouraging and hopeful post. I've only had chance to briefly "google" the drug and found this link which others may find informative: http://www.medicalnewstoday.com/medicalnews.php?newsid=34139 It looks as though the drug has been approved for the EU but I don't know whether it has been approved for use in the U.S. yet. I'll try and dig up some more info. Thanks again, India

I have been feeling pretty good for several months with only the occasional dizzy spell and tachy episode. Two weeks ago, I began to feel pretty crummy--dizziness pretty constant. I thought it was part of the usual pattern which goes away after a few days, but it has just got worse. What concerns me most is that my systolic seems relatively normal (lowest has been 98 and usually it is 100-115). But my diastolic has been very low (for me) down to 43 and usually hovering between 45 and 50. I have tried all the usual things that in the past have brought it back up--raising legs, leg exercises, keeping well hydrated--you know the drill. But it does NOTHING to my diastolic. In fact, after exercising it is dropping more. I also seem to be experiencing drops in my bp at night--it wakes me up and I feel just terrible--shaking, sweaty, short of breath. This goes away if I raise my legs. I also teach and usually if I am feeling crummy in the morning, actually standing and walking about the classroom--I am a very animated lecturer--actually helps. But it is doing nothing for me now. I felt awful this morning in class. I am on .1mg of florinef and 25mg of atenolol (the latter for tachy) and this combination has worked well for over a year now. I also take a very low dose of Klonopin to help me sleep. My question is, what is going on? I had, what I consider from reading posts here, very mild POTS before. Obviously I had worse days than others. But now I feel really debilitated, a feeling that I have not had before. Does the condition get worse? Do people get used to florinef and need a higher dose? Should I cut down on the atenolol? Is the klonopin making things worse? I know these are all questions I should ask my doctor, but she doesn't know anything about POTS and neither does anyone else, it seems, in Hawaii. I can't stop working: my husband and I literally cannot afford to live off just one income. Help! I've read some scary articles that cite a correlation between low diastolic in middle age and dementia later on in life! What can I do? India

Hi, I experience the same symptoms and also underwent a sleep study. Aka the study, I do not have sleep apnea, however. Although it feels like I am stopping breathing, I actually don't, but my upper airway does become restricted. I technically have something called Upper Airway Resistance Syndrome (UARS). I am still on the first line of treatment which is simply using those nasal breathing strips. There are other surgical and non surgical options if this doesn't work. The important thing is to get it checked out and not immediately leap to the conclusion that it is sleep apnea. UARS is a bit of a controversial diagnosis at the moment: some doctors arguing that it is just a form of apnea, many others claiming it is a distinct syndrome in itself. Regardless, ask for a sleep study--painless, although you do end up looking like a bad sci-fi movie extra! For me, the sleep study also revealed that I had restless leg syndrome that was contributing to my constantly interrupted sleep and I have adopted exercises that help to control that. Good luck! India

Hi all, I've been absent for a while from this group because I have felt so dispirited. Not by anything anyone has said here. But by the total lack of care I am getting from the medical community out here in Hawaii. In January things were getting very bad for me. My cardiologist was no help at all--knows nothing about POTS, and the only guy who did know something (the guy who diagnosed me) moved off island. However, my ever supportive husband--who was terribly worried about me as I was practically bed bound which is very unusual for me--after huge efforts managed to find a supposed (and published) expert on POTS. My regular health insurance would not cover a consultation with him, so I had to pay for this all out of my own pocket, but I was happy to, initially at least, in order to get to see someone with some experience, even expertise with this problem. So, I went to see him--he was running 1 1/2 hours behind schedule--with high expectations. These expectations were totally dashed. First, I saw him only briefly--of that, more in a moment--and spent much of the time with an intern. Now, I am the first one to admit that we all have to learn, so I was willing to go along, albeit begrudgingly, as long as I got to talk to him too. The intern took a long and detailed medical history, she had my whole, extensive medical file that I had sent in weeks before, and she was sympathetic and I have not complaints about her. What I do have serious concerns with, however, is the so-called expert's diagnosis based on the tests performed. Very briefly, they had me lie down and took my BP and pulse, had me sit up and took my BP and pulse, and then had me stand up and took my BP and pulse. On the basis of this elaborate series of tests, the expert concluded that I did not have POTS as there was no serious changes in BP or pulse, and he couldn't do anything for me, goodbye. I was absolutely fuming (they should have taken my BP after he announced his diagnosis!). Surely those tests are completely inappropriate and inconclusive, especially in someone who is on medication to boost her blood pressure as I am (florinef). When I did the Tilt Table test a 18 months ago, my BP dropped to 50/36 and I almost passed out. That was not immediately on standing but after a period of time. The doc still said I had orthostatic intolerance. Now this guy is saying that BP drops are immediate in someone who has POTS when they stand up. Is this true? I have no other resources here. I can't simply jump in a car and drive to get a second opinion (unless someone can loan me one of those cool James Bond underwater cars). I decided to say sod the whole medical establishment (pardon my French) and determined to just will myself to feel better and throw myself back on my own reserves because, outside of my long-suffering husband, there was no one else who I could depend on. And I felt actually better for most of the Spring semester. But, inevitably, I fell into a POTS (or whatever it is I have) hole a few weeks ago, and am having difficulty crawling out again. I feel so totally isolated and completely helpless. I guess what I want is a definitive diagnosis. Even if I can't be treated, at least I'll know what it is or isn't I've got and I am sure that will help me psychologically and thus physically. Any advice? India

Hi Janet (and greetings from warm and sunny Hawaii!) I too have the same symptoms when sitting and especially after prolonged sitting and periods of relaxation (you'd think relaxing would make me feel better!). As Kristen implies, I actually sometimes feel better doing things than sitting down--very frustrating. I get tachy when resting too--in fact, now that my semester is over (I teach) and the pressure is off a bit, I actually have been experiencing more episodes of light-headedness and tachyness than when I was running around during the semester. I try to keep my activity level up to counteract this. But I understand that you can't/don't want to be doing things 24/7. When I do lie down, I too do leg lifts. I have this inflatable exercise noodle that I put my legs up on and roll it back and forth and this helps bring my BP back up pretty quickly. Crossing your legs is supposed to help too--which is why I guess they always ask me to uncross mine when they take my BP at the docs. India

Name: Ally Birthplace: England Kids: Only my husband Pets: One totally insane cat Favorite Color: Blue Favorite Flower: Cliche I know, but...roses Kitchen Theme: Don't Assume I Cook Favorite Drink: Used to be Scotch. Under present circumstances, ginger ale! Last T.V. show you watched: Battlestar Galactica Last movie your rented: Wallace and Gromit and The Curse of the Were Rabbit Favorite Food: Curry and Cheese (not on same plate) Favorite T.V. shows: Law and Order SVU, CI, CSI, Masterpiece Theater, Battlestar Galactica Red or Pink: Red Favorite Ice Cream: Chocolate Mint Chip but as can't eat the **** stuff (chocolate) anymore, now Raspberry Ripple (available in England only, sob) Favorite Crayon Color: Not allowed to use crayons: tried to eat them as a child Ever bungee jumped: not intentionally Eye Color: Hazel Hair color: Dark brown (at the moment) Furthest you have ever been: Hawaii (from original home in England) Siblings: yes Last time you cried: March 9th: anniversary of my Dad's death Favorite Game: absolutely anything competitive Black or White: definitely black Rollingstones or the Beatles: Beatles Last Food you ate: peanuts Diamonds or sapphires: sapphires Beach or the mountains: mountains in the morning, beach in the afternoon Sweats or jeans: Jeans Ever went skinny dipping: it's next on my list Married more than once: once is more than enough What book are you reading now: Emma Hobbies: when able: tennis, pilates, walking along beach. Reading, word and number puzzles, movies Favorite Actor: (pre-dvd) Humphrey Bogart/Gregory Peck: (dvd age) Russell Crowe Favorite Actress: Helen Mirren Favorite Candy Bar: Double Decker (English) Ever toilet papered someone's house: NO Gatorade: can't abide sugary stuff Favorite fruit: raspberries Men with facial hair: why not? Steak or Lobster? Chicken Gold or silver: silver Favorite vehicle: Aston Martin Viper (yeah, like I'm ever going to own one, and only then if they make a hybrid version!) Favorite song at the moment: Have no idea what is popular now. Am going through a retro mode and listening to a lot of The Jam (rebel woman!) Most common phrase: "you're on the right track" Used frequently in class and when grading papers to be kind when a student really doesn't get it at all! Pet peeve: Oldie but goodie: men who don't put the seat down!

On Tuesday I've got to fly to Philadelphia for a work related conference. I live in Hawaii and such a long trip is filling me with dread. I made three trips back to England last year when my father was terminally ill and on two of them I was completely non-functional for the first few days home. My POTS has got progressively worse over the past month, although I have finally found a specialist here who is willing to try and help me. I won't be seeing him till I get back from Philly, however. Anyway, I was wondering if anyone has any advice as to how I can make this trip more tolerable. I am trying to get as much rest as I can beforehand and I am feeling a lot improved compared to my awful Christmas Day. But I am still very anxious about making this trip. Also, I've read elsewhere that NSAIDs like Ibuprofen can be of some help to POTS sufferers. Has anyone had experience of this and would this be worth trying for my trip? Hauoli Makahiki Hou (Happy New Year) (You have not experienced New Year if you haven't experiened it in Hawaii--it's only 6pm here and my house is already filling with smoke from firecrackers that have been going off since Christmas Eve!) India

My thoughts and fervent hopes will be with you. India

I don't have vision problems so can't speak to that. But to the larger question of whether I know I am going to have a good day or not, I have to agree with the others: I just can't tell. I got up this morning, for example, feeling relatively good. But two hours into the morning I feel like crawling back into bed. It doesn't even seem to be related to how well I sleep. Sometimes I can have a restless night but feel fine during the day. Sometimes I get the best night's sleep in months and I can barely function during the day. Go figure! India

Aloha, Just to echo Melissa's post... I had similar symptoms and, also having trolled the sleep disorders forum and having a husband who has major sleep issues, I insisted that my pcp doctor order me a sleep study. I don't have apnea, but I do have a form of apnea (at least according to some studies) called Upper Airway Resistance Syndrome (or UARS). Luckily, my pcp, who knows nothing about POTS, agreed. It is my understanding from reading elsewhere, that POTS sufferers do tend towards apnea or other sleep related disorders. It might be worth having a study just to rule out problems. Good luck! India

Aloha Belinda, I was on nadalol for six years and it really helped with tachy episodes and kept my unnaturally high resting heart rate normal. I had a good experience with nadalol initially: no nausea which I understand some people get. But after about five years I began to feel increasingly fatigued. The doc thought it might be the nadalol and switched me to atenolol. This seems to be less draining. However, I think it's hard to tell whether its the meds or the POTS that is making me tired. Both beta blockers worked well for me in dealing with tachy episodes, however. I still get them, but I believe far less frequently than I would otherwise. I've also heard people report increased shortness of breath with nadolol but I think you can get that on any BB. I think it's different for everyone and depends on what other drug combos you are on. India

Nina, I notice that you list benadryl on your list of medications. My husband has fibromyalgia and problems sleeping. He takes benadryl at night and that helps him get a fairly decent nights sleep. If you haven't tried that--and I'm pretty sure you have--you might give it a whirl. He does feel rather dopey in the a.m. but it wears off and I think the benefits outweigh the negatives. I too have problems sleeping. I took Ambien with really bad results: I'd get off to sleep o.k, but then wake up halfway through the night in an almost halluconogenic state--very scary. I take clonazepam before bed, but it usually allows me to sleep only till about 2am and then I am awake for hours or sleep fitfully till it's time to get up. My grandmother swore by a glass of hot milk mixed with a tot of brandy as a sleep aid. She lived a long and healthy life on it as well! India

Kudos, Persephone! Getting through a semester anywhere is a terrific accomplishment, but especially at Oxford! I hope the next term is even better. India

Thanks for all the replies, guys! On the one hand it's a great comfort to know you're not alone when something wacky like this happens. But on the other hand, it's "disappointing" to me to think I'm getting worse. I believe I've had POTS most of my life, although only recently diagnosed. And I've never had this issue with eating before. It's just something that has quite literally developed over the past three to four weeks. I've had issues with feeling a bit woozy if I've had a really large meal in the past, but nothing like this. I've counted myself lucky as a POTS eater because I haven't suffered the catastrophic weight loss that so many others have, and boy do I enjoy eating! But, as you said Radha and Finnette, sometimes I feel terrible even after eating just a couple of saltines! Other times I can manage decent amounts. Liquids I seem to be able to manage: soup without any veg or meat in it, water etc. I do take 25mg of atenolol, which I understand is pretty low. Maybe I should talk to my doc--when she returns from her extended vacation--about the dosage. I was wondering whether the florinef, which I started in August, might be making things worse? I hope not as it has done wonders for the woozies! India

I have been feeling increasingly unwell for the past three weeks: breathing difficulties, heart skipping about all over the place, dizziness etc etc. I called my cardiologist only to find she has the whole of December off--nice for some. Her assistant's advice was to see my PCP, who hasn't a clue about POTS. Anyway, this is all a digression. I am feeling somewhat better now--no explanation for why, of course. But the one thing that is persisting that I have not experienced before is that almost every time I eat, my heart races--120 plus--or feels like it is pounding out of my chest. It eventually subsides about an hour after eating and then I feel shakey and very sleepy for a few more hours. I've had the heart racing, shakes etc before, but it has never been connected to eating. Does anyone have any idea what is going on? Mele Kalikimaka to all! India

You'll have to consult your college's ADA policy statement. I can tell you what my college's statement says but I don't know if all unis are the same. At my college students have to submit documentation to verify their eligibility for accomodations. The documentation must be signed by a certified physician or psychologist and include the following: (1) diagnosis of a specific physical or mental (including learning) disability and the precise accommodations that are necessary, and (2) reference to evaluation reports that are based upon the guidelines for certification. At my collge your daughter would also have to have a Disability Disclosure Form upon which she bases her need for accomodations and should have an official notice that her claims have been accepted on the basis of this form and that specific accomodations will be made. The problem is, the college, if it is anything like the ones I have worked out, require and will make a SPECIFIC list of accomodations needed. That means that if you or your daughter request anything beyond that after the initial accomodations have been agreed to, the University seems NOT to be LEGALLY (let's leave aside morally or just being a decent human being) bound to provide those additional (as they would see it, ad hoc) accomodations. Thus, if the initital accomodations agreed to by your daughter and university said nothing about WHERE tests were to be taken or under what temperature conditions, I don't believe legally the university is bound to accomodate you. Like I say, policies may vary from college to college and IAM NOT A LAWYER! If the accomodations policy at your college is more liberal--less specific as to defining precisely what accomodations must be made--you may have a legal case. You might want to consult a specialist in this area. Hope this shed some light on the issue. I'm so sorry that your daughter is having such difficulties. I would add that at ALL the colleges I have taught accomodations for students to take tests were ALWAYS at the ADA office NOT in a professor's office. The unviersity should have a special testing facility provided to accomodate such students. India

The recumbent bikes I have tried are lower to the ground and you are laying back slightly in the seat and the foot and leg action is not so much up and down as it is on a stationary or regular bike but more out in front--does that make sense? It's like you are half lying down and kicking your legs out in front of you. My problem with the bike was getting up from the recumbent position: I got the usual feeling of dizziness and heart acceleration. I've got a rowing machine. I like it because I am sitting down and sitting low and it exercises the legs if you do the motion right. I used to row--on the water, during the pleistocine era--in college and kind of remember how it was done: push with your legs first and then pull with your arms when your legs have reached full extension. It helps strengthen the legs if you do it properly and I think thus keeps the blood pooling at bay. I got a rowing machine shipped out to Hawaii from the mainland! Nothing fancy and it cost around $200 which I think is a bargain. It's not exactly something you can keep in the living room and doesn't fold away neatly like a treadmill, but it's something I will use and doesn't collect dust and that's the main thing. India

I would say I feel ravenous for air sometimes! Things have gotten so bad in this last week that I went to my PCP this morning for help (regular cardiologist is off for the whole month of December!). He thinks things might be being made worse by allergies and has given me a QVAR (beclomethasone dipropionate) inhaler. "See how it goes," he says " and come back in two months." I've got to say that I don't want to wait that long. My air hunger has been pretty constant throughout the day and worse on exertion, but is worse at night, although not constantly. Sometimes I feel a lot worse when I lay down, other times fine, better than vertical. It's worse when I wake up at night, however, and especially after sleeping well for a few hours (?what's that all about?) Last night, I woke up after five hours solid sleep (extremely unusual length of downtime for me) and I felt like my abdomen between my breasts was absolutely paralyzed. I couldn't breath, I was sweating profusely. Then I got up, had a drink of water, went back to bed, and the breathlessness tapered off. It was extremely scary. I've had a sleep study--no significant O2 desaturation apparently, no apnea, but upper airway resistance syndrome supposedly is my diagnosis. If so, 1) I don't see how this is causing breathlessness in the day and 2) it seems pretty much like apnea to me. I don't seem to have any heart racing with the episodes (some docs have tried to dismiss it as a panic attack but my heart is not pounding). It certainly makes me anxious to go to sleep, however, as the episodes are every night now. Anyway, I've just babbled on and not addressed your real issues. One question I have is what do you mean by "sleep paralysis?" Does your body freeze up or your breathing? I can move everything but my abdomen. In another thread, someone asked whether sleeping meds could make this worse. I'm on Klonopin for sleeping and as a muscle relaxant. Could this be making things worse? I can't tell you how b***** fed up I am. I thought the florinef was straightening me out and now this happens. My husband has fibromyalgia and so knocks himself out with benadryl and klonopin every night so I have to sit there alone and panic when this happens. I know, oh woe is me! India

Miriam, I am so sorry for your loss. My thoughts are with you. India