Merrill

Hi, Jessica. Boy, those last posts were so good! I hope they made you feel better and more hopeful about the many wonderful surprises life has in store for you--in the world of work and beyond. I can't blame you for venting...that was a really crummy thing to have happen, and I was sorry to hear about this new development. But may I also say that I was happy to hear your voice return to the board? I've been wondering about you and about what's been going on. Did your exams go well? I've been inspired (on other posts) by the story of your pregnancy and by what being a mom means to you. (I'm heading into a second IVF try this month, and I love hearing that people can do OK! Of course, I've got 20 years on ya, and don't I wish my body was 22 again!) Anyway, chin up and keep the faith and give that Ethan-boy a smooch on the cheek! And let us know what happens next! Merrill

Danelle--I'm sorry you were so disappointed--it sounds like a rough trip, but it also sounds like you handled it beautifully. Your patience in that waiting room is admirable indeed. The stress and anxiety you now feel is a natural reaction to all you've been through--including that loooonnng car ride! But I agree that now it's up to you to channel that energy in healthy ways and begin looking for health care providers in your area who can help you to feel better. (In addition to conventional western doctors, I'm thinking acupuncturists, massage therapists, nutritionists, perhaps even psychologists, who can help you get your body, mind, and soul back in balance.) I think everyone's advice here is on the money, especially M.Jan's advice to find a good cardiologist/electrophysiologist in your area who can pick up the ball Dr. Grubb dropped and run with it, with you alongside. S/he can put you on a holter monitor for one day or three to find more about these arrythmias (mine showed a couple thousand of them in a 24 hour period--which seemed a lot, but I too was told by three of the top cardiologists at Northwestern that they are of no concern...) I have to say, I found it a bit curious that he gave you prescriptions for both florinef and midodrine. Did he tell you to take them both at once? Or to try one and then the other for a number of weeks each to see what helps you most? (My own doctors spoke of trying me first on midodrine and then on florinef if that didn't work... but definitely not to take both together. I've chosen the no drug route for now; I get along well enough on the low-tech, no drug therapies, and since I've got another IVF attempt this month, drugs are out of my picture for now anyway.) Maybe others here on the board can help figure that piece out...but really, a good cardiologist is your best bet. Good luck--hugs--and I hope you feel better soon! Merrill

Hi, Sue. I just called the store where I bought it and they said they no longer carry it and that it had been discontinued. BUT!!! I think that guy was wrong! I just did a google search for "cooling neck wrap" and I found several similar products--including the one I bought, called the Cobber (an Australian product). Take a look at the URLs below; you can compare/contrast the products and prices. http://www.campmor.com/webapp/wcs/stores/s...mberId=12500226 http://www.dti-web.com/bodycool/main.html and http://www.amerimerc.com/garden_n_patio/ca.../neck_buddy.asp I accidentally just closed the results of my google search; there were other links to check out. Oh well; you can repeat the search if you want to look beyond the URLs provided above. Definitely cheaper than a cooling vest! And from these sites, it looks like it would be great for those of you suffering from headaches and menopausal symptoms as well! I have to say, this product TOTALLY saved me while I was on Grand Cayman Island. It's HOT there... and I wore compression hose and long pants almost all of the time. My tolerance for heat is very very low. Please don't ask me how we ended up on an island for 4 days but I did just fine. A few bad episodes, but the effects of the heat were absolutely ameliorated by the neck wrap. (And certainly I looked for airconditioning and shade and didn't spend hours sunbathing!) A word of warning: I went into the ocean wearing the wrap and while I can't be positive of this, I think the salt water caused some kind of deterioration of the crystals inside. The next day, it seemed like something was wrong with the wrap--almost like the gel was coming out, even though I couldn't see it or smell it. Something just seemed wrong somehow. Since the trip was nearly over, I threw it away. But I'll certainly order another one (I'm glad I found these sites!) and wear it during Chicago's hot summer. (No salt water in sight!) The Web sites don't say "don't go in the ocean wearing the wrap..." so maybe I'm mistaken. Anyway, have a great trip--and I hope others can get some benefit from this cheap, lightweight, and easy-to-wear product. (And even if you don't order this, you can always soak a neck scarf in cold water and tie it around your neck. I've done that before too and it helps a LOT.) m

Oh yes -- thanks for reminding me, Pamyla. I was wearing thigh high compression hose too, and I've been told they're a must--especially during flights! I find them a must just for having energy to walk around. I didn't wear them for a few hours at a time a couple of days during my trip--first time I've had them off in a few months(!)--and I could REALLY feel the difference. Even tho I was in a warm place, I much preferred the way I felt with the compression hose on than the way I felt with them off.

Hi Sue. I've got POTS and I'm medication free too. I do like tearose (mostly) -- I wear compression hose (thigh high), and have a high salt and fluid diet. I drink 10-20 oz of gatorade a day in addition to all the water, and I've cut my caffeine down to almost nothing--whatever I get in a little chocolate. These things have helped to lower my heart rate some (before making these adaptations, it was up over 150 while awake). I also try to eat well and take a multivitamin. Sleep is not always restorative and I wake many times during the night. Occasionally I'll take 1/2 a tylenol pm if I don't fall alseep in 2 hours; it takes the edge off and I usually stay down the rest of the night--and I'm not wrecked in the am. I think lowering my heart rate has helped with the exercise intolerance a little. (I don't try to do more than attend a once-a-week gentle/slow yoga class, though, and walk to and from the bathroom at work a few times a day--it's far!) And I discovered a product that can help with the heat intolerance: a cooling neck wrap. It worked great when I was in a very warm place for a few days last week. Best, m

This is so interesting--my sweat test was completely different! Mine was done with electricity--I think I described it in detail on another post. No sauna for me. And boy, am I thankful!

Yes, Calypso, I--like pretty much everyone else who responded--have the same symptom/s you describe. Sometimes the difficulty hits hardest when I'm eating a meal--even a light meal--but I also have it sometimes while walking, standing around, or even just watching TV! I believe it is a POTS symptom, and yes, you can have it while sitting as people have reported. It's like you can't get a full breath... All my life I've had asthma as an allergic reaction to cats (and I grew up with cats and so I grew up with asthma) and so I know what asthma feels like. This symtom we're all describing is definitely NOT asthma. Mostly I try not to think about it very much when it's going on--paying attention to it and worrying about it just seems to make it worse for me! It can be very stressful--and stress just makes all kinds of pots symptoms flare. I find the controlled breathing you're supposed to do during meditation and yoga to be scary. Focusing on the breath just makes me feel like something's wrong with my breathing! So instead I let my body do what it needs to do (breathe) at the tempo it needs to do it--and I try to relax and let my mind take me someplace I want to be. On a beach, driving a mountain road, cuddling my parrot... OR I'll just read a book or watch TV or make a phone call or scour the kitchen sink. Something that will distract me from myself! Be well, Merrill

I've been on 4 flights (2 each way) in the last week and did just fine. Yes, take water--tho I much prefer gatorade when I want to get hydrated quick; I had both along on the flight. They'll probably give you pretzels for a snack, which is a happy thing. Don't worry about it; in my experience this go-'round, flying didn't have an impact on the POTS symptoms (tho I did catch a horrible cold during the first leg of the first flight--it lasted only 24 hours, which is very unusual for me, so I was lucky. I think it was a stress related--I've had a helluva month!) Good luck!

I'm not a nurse, but I play one on TV. (Just kidding. ) Actually, nurse was a silly nickname when I was a kid--I was always the go-to person -- and still am, actually -- when people wanted to know how to treat this or that. I'm an editor of English language arts and literature textbooks and other products for grades 6-12.

I can't remember where I read this, but I do recall reading a recommendation to drink a cup or two of strong coffee before getting out of bed in the morning (if you can tolerate it and it doesn't make the tachycardia worse and you don't get jittery). This is for folks who have the hypotension (low bp) with pots... I wish I could find that article! But I read it too...

Hi Danelle. I'd love to be able to offer some words of comfort as you embark on your very important journey to see Dr. Grubb. But if there's one thing I've learned in the last couple months of reading posts on this forum, it's that each of us is unique and each of us reacts differently to different sets of stimuli and environmental change! My guess is that how you do--on the plane or in the car--will be in primarily due to how you're doing before you start out. That is, if you're feeling really crappy, getting in a car or heading to the airport won't make you feel any better! So frankly, it's probably a wash either way. If you haven't been on a plane in years, then I don't think you really have any idea what it'll be like for you next week. That is, other people's bad experiences--or good ones--won't really be a predictor for YOU! You can't know before you try how flying will be for you. (Whereas you do seem to know that driving long distances makes your legs ache, because that's something you HAVE tried in more recent times.) Let me reemphasize the things you already know to do--be especially sure to have a high sodium, high fluid diet for a couple days before flying; make sure you're well-hydrated before takeoff and have a bottle of gatorade on hand for during the flight. And absolutely positively wear compression hose--thigh high or higher! (In fact, wear them if you decide to drive--they may help with the leg-ache thing.) I also recommend bringing with you a portable CD player, plenty of batteries, and a CD or 2 of your favorite music--the kind you can sing along to in your head--or a meditation/visualization CDs that can help focus your mind and energy if you're feeling tense and worried or tachy. (This helps me enormously!) I truly hope that next week you'll be feeling pretty decent and strong and well rested so that your travel will feel more like an adventure than a harbinger of more illness and uncontrollable symptoms. I haven't traveled since I was diagnosed with POTS (after 30 or so years of tachycardia and a whole host of other symtoms that were ignored or misdiagnosed--nothing incapacitating, thank goodness. But this year I've been much more symptomatic and finally saw cardiologists and got diagnosed.) But I AM getting on a plane to Grand Cayman Island next week for 5 days--a long flight, 2 planes, from Chicago! This will be my first time flying prepared, however, and I'm hoping it will be a good trip. G-d knows I need it--after a failed IVF attempt and a father in hospital and nursing facility for the last month, I need to go somewhere and SIT DOWN. Plus it's my 5th wedding anniversary ... but I digress. (For the record, flying has never made my tachycardia or other symptoms worse... except I'm typically extremely constipated throughout my trip! But now that I know WHY that happens, I'll be able to take appropriate steps to take care of that!) I'll be back the 27th, so I can post again and let you know whether my own advice is worth its salt. Think good thoughts, Merrill

Happy Birthday, Sue! Thanks for writing tonight and sharing some details of what sounds like a fantastic day! I'm so happy for you! May this be the start of a happy and healthy, and peaceful new year for you! Nighty nite, Merrill

Hi Dawn. I hate to sound dumb, but what's an EMG? Is it like an MRI of the brain? (Have you had one of those yet?) You said you hadn't posted in a while, and since I have trouble keeping everyone's details straight, I searched for your posts to get a sense of what's been going on for you lately. First, I want to say how sorry I am to hear you're having a tough spell right now ... and I wonder how your daughter is doing, now that she's being treated for POTS. I'm concerned about one line in one of your earlier posts--you wrote "I used to have MS." Multiple sclerosis? My brother has this disease (diagnosed 5 months ago with MRI of the brain) ... and so does my sister-in-law. Sadly, this is not a curable disease--one that a person "used to have." Are you being treated for it--or were you ever? (There are some great new drugs in use now...) I wonder if this could be the source of some of your discomfort right now... flare ups can be quite devastating. I hope you get some answers soon and that you find comfort among family and friends while you wait. Keep us posted! All the best, m

Deb, I could have written your note! My nights are exactly like yours! (Except many days, I don't feel too rested in the morning... but the pattern is precisely the same.) G'nite, m

Alcohol--even just a teeny sip--makes me feel like I have fire in my veins. It's so incredibly uncomfortable so I don't even bother anymore. Like others, doctors have told me to stay away from it. m

That sounds like an awful lot of water; I'd be peeing every 20 minutes too! DId your doc tell you a to drink more than a gallon? Mine recommended something that is corroborated by the medical articles I've read about POTS-- and that's 2 to 2.5 liters of fluids a day. (And yes, the electrolytes are important, and there are lots of options for getting those if you don't like gatorade.)

I just have plain ol' boring POTS (the non-fainting kind). Allergies too, but that's not related. m

There's a broad range of normal when it comes to blood pressure--and much is dependent on weight/height.

My advice would be to call your prescribing physician and make sure s/he fully explains the mechanism of the medication and tells you whether what you're experiencing is OK. It's possible your dose should be adjusted if you're uncomfortable. Your pharmacist may be able to help you understand how the drug works or how it may be interacting with anything else you're taking if you can't get through to your physician right away.

The sweat test is nothing at all like what you'd think ... and from your post, I can tell you're worried about being made to sweat because they raise the environmental temperature in the space you're in. Nothing could be farther from the truth. My cardiologists at Northwestern Mem Hosp in Chicago told me that the Mayo clinic is now the only center doing this kind of autonomic nervous system test in the country... (I was the LAST person they tried it on at Northwestern in early January... it's such a sensitive test and very prone to failure... they discontinued it!) I wonder, tho, if it isn't also being done at Vanderbilt, since Dr. Robertson is the leading POTS researcher... I digress. Here's a description of my sweat test: they tightly wrapped a strap around 4 areas on the left side of my body: left wrist, left calf below knee, left ankle, left foot. Those spots get hooked up to monitors/computers and when everything is good to go, they run a teeny electrical current to those spots. It doesn't hurt at all, and it isn't particularly unpleasant even. (The tightly wrapped straps are the most uncomfortable part, I suppose.) Setting up the test takes longer than the test itself. Please don't worry about it; you get to lie down and if you want, you can (should?) practice your breathing and visualization while the test administrators set about their work. At mayo you'll probably undergo a bunch of other seemingly goofy tests, including some measured deep breathing tests. Nothing's physically painful, tho some things can be uncomfortable. (For example, some find the tilt table more difficult to manage than others--but remember that it's over fairly quickly!) FYI blood pressure changes from sitting to lying and vise versa are not diagnostic of POTS. For some with pots, bp stays the same; for some it goes up and for some it goes down. Good luck, m

I think our bodies are far more sensitive than other people's when it comes to the onset of a cold or virus or flu bug--the kinds of things that hit everyone from time to time. I can feel it for a day or two before the true onset of viral symptoms (the fever, sore throat, runny nose, and all the rest). I feel shakey and weird and completely off my game... For me, these precurser symptoms are harder for me to bear than the viral symptoms when they finally take hold! I just try to stay calm, take mega (and I mean MEGA) doses of vitamin C, keep drinking gatorade and other fluids, and get extra rest if possible. And remember, this too will pass. m

Couple thoughts--maybe more than 2: * Getting a second opinion before surgery can't hurt--makes a lot of sense, actually, if you're in doubt. But from everything you've written--on this post and in past posts, even going back to your very first--it sounds like the right kind of physician for you is a cardiologist/electrophysiologist. And if your doctor has diagnosed POTS before (and understands what it is, what to look for, and has put you through the appropriate autonomic nervous system tests etc.) then it seems to me that you don't need to seek a second opinion from a specialist in the Autonomic Nervous System. Get a second opinion from an experienced cardiologist who has lots and lots and lots and lots of experience treating patients with Inappropriate Sinus Tachycardia. There may be more than one possible type of treatment--and together with your parents and/or other adults whom you trust and love, you need to then choose what's best for you. While it's true that symptomatically there is overlap between POTS and IST--mostly pertaining to heart rate--you've provided so many details in your posts about your test results and your many many capabilities that point to IST and not POTS. * I hope that as you're exploring POTS on this web site, you're also researching IST on other appropriate web sites. There's so much to learn and understand about this condition. * In my every waking hour, I know that my heart beats as fast as yours does, and sometimes faster. I've had this since a teenager, and that means it's been beating fast for more than 30 years. My heart is still of normal size and structure. I'm telling you this because I hope to take the edge off your fear. You have the time you need to do any research you want or need to do. * You sound like a person who's excited about life and all that lies ahead! So many exciting things are in your future! When I read about your athleticism, your energy, your ambition--my own heart quickens! Go for it--ALL of it. It's true that you've got a hurdle to jump over right now, but you have the motivation to do exactly that. I hope you'll do what it takes now to nourish yourself, body and soul. And that means RELAX, first and foremost... (your appetite will then return, and it's important that you let it!) Let me recommend some things: read Andrew Weil's book "Spontaneous Healing." (It was recommended to me on this site by someone else, and I got it, and now I want to recommend it to you.) Read poetry (may I recommend Mary Oliver?) Read Buddhist philosophy. Read "Be Here Now" by Ram Dass. And if it turns out you are indeed getting ready for surgery, absolutely positively you must buy the Surgery Pack (CDs or tapes) from www.healthjourneys.com. Listen every day; it prepared me for my own surgery last summer and it did wonders for me. Best of luck to you--keep in touch and let us know how you're doing. (I pray that some day you'll change your post name to LifeIsGood!) Merrill

Welcome back, optimist!!! Thanks for the extra info... It must've been very scary to see what happened to your dad... I'm going to hold onto the thought that this same thing isn't going to happen to you! Join me, OK? I have a suggestion to add to Sue's ... I had surgery last summer and bought the "surgery pack" from http://www.healthjourneys.com I highly recommend this set of meditation CDs for anyone anticipating (or healing from) surgery... But one of the disks that was part of the package is called Healthful Sleep, and you can order that separately. I just took another look at the product catalog--there are so many great choices for people like us (tho there isn't one for pots specifically; I should write them!) There are cardiac health cds, blood pressure, stress, and other related topics. Take a look! I keep a portable CD player at my bedside and listen to the CD when I'm having trouble falling asleep. (I'm so familiar with it now that sometimes I just lie on my back and repeat the opening lines over and over, hearing her voice, and before I know it ... zzzzzzz.) Be well, m

Tearose, when you say you want to try something "noninvasive," does that mean that you typically take some kind of sleep aid before bed to help you fall asleep? Are you going to try going without--to try to help yourself fall asleep and stay asleep naturally? Please say more... In the meantime, I'm glad you found out more about yourself as a result of the test; I'll be interested to hear what Mayo has to say about it! m PS I take it you went w/your family to visit schools? Hope you enjoyed the journey...

Migraine, beware the caffeinated soft drinks. Pepsi, coke, and other caffeinated beverages (coffee, too, obviously) are dehydrating--and the last thing we pots people need is dehydration! If you do have a Pepsi for a treat (and let's face it, we all need treats now and then), you'll need to be sure to drink extra water or electrolyte drinks to compensate. It's really important to get that 2 - 2.5 liters of fluids a day (67 - 84 ounces) -- and all kinds of drinks count (except the caffeinated ones!) V-8 juice is a great source of vitamins as well as sodium; soups and broths are good too (especially if you prefer warm drinks to cold). Good luck finding kaolectrolyte or something similar. (I'm a gatorade fan myself--have you tried all the different flavors? There may be something there you like...) m