firewatcher

Michelle, I have read somewhere, and don't quote me on this, that the chest pain may be due to an "over-contraction" of the heart muscle when your HR rises that fast. Too much blood is squeezed from the heart, and then it refills. I don't remember where I read it, but mine only happens when I am tachy. I can go from tachy to brady and back just by lying down and standing up. Once my heart rate hit 136 after cleaning two sinks and three mirrors! Inderal has been almost a miracle drug for me. I can walk now, without feeling like my heart is going to thump out of my chest. My BP and HR also look like yours, and my neuro has said ANS dysfunction, still waiting on the POTS dx. Let us all know how your trip to Bham goes, I don't live too far from there. Jennifer

May God truly bless you. Mothers are the unsung heroes of human history. No one can understand the love and sacrifice that is demanded to be a mother and do it well. Thank you.

My husband is an ex-military flight instructor, and this sounds like a maneuver that he taught all his students against G-force blackouts. He would describe it as a straining maneuver (like going to the bathroom.) If it works for them, it should work for us. Just for kicks, take your blood pressure right after you do one of those (unless you have high blood pressure) it should shoot up. I've done it a couple times when I felt lightheaded, but I have never passed out...yet. Jennifer

He sounds like a true angel! How are you today? P.S. NEVER waste an opportunity to show true gratitude, it acts like a vaccine against cynicism! Jennifer

Maxine, I am so sorry that you had to go through that! Slam him on the medical review sites (healthgrades.com, etc.) At least your other doctors are supportive. This makes me soooo mad! I have to go back to an endocrinologist who said "I should spank you! You were wasting your time with specialists when I knew exactly what was wrong." He didn't know and he was wrong, but he is almost the only game in town. I don't know how you controlled your temper. Hang in there! Many supportive hugs and positive thoughts! I will pray for you! Jennifer

It would be safest to talk to the anesthesiologist yourself and make him completely aware of everything that is going on. Knowledge is power. Do not leave it up to your GI doc to tell him, especially if he is freaking out. You want calm, rational, prepared people in there, not someone who will freak out.

I might just be thrilled! How POTS smart is he? Could he tell my endo at Emory whether or not I have Diabetes insipidus? Is he as good as anyone at Vanderbilt? When will he get here? (Sorry for the brevity, I am in a terrible mood right now because of miscommunication with my doctors ) Jennifer

Beta blockers have helped me tremendously! I could not work for nine months because of the tremor, it was very frustrating. It is almost completely under control now on Inderal. It did not do anything for the fatigue though. Jennifer

Thank you! I did not think it was an arrhythmia, just an irregular heart-rate. But, everything I googled with "irregular heart rate" came back with arrhythmia... My heart has never shown irregular wave forms on the ECGs, just irregular heart rates. The nurse had told me that if I am just standing there, doing nothing, that my heart rate should become regular (like a metronome?) like it does when I sit or lie down. When I stood up, it never settled into a regular rate, it would beat at 88 for two beats, then speed up to 101, and then at 96-98 for a couple beats and back down...Even when I held my breath. How do you note that? Is that a typical POTS thing? Which number should I use (the lowest heart rate, highest or an average?) It is all very confusing, and you both did a much better job explaining than I did. Thanks! Jennifer

Hi Cardiactec, I have a question about irregular heartbeats: is an irregular heart rate technically an arrhythmia? When I did my orthostatic BP reading, once I stood, the heartrate monitor would not register a regular heart rate, it bounced up and down between 88-101 bpm. The nurse said that it should become regular since I was not moving. Is this true? I had a holter monitor and stress test and the ECG showed "normal" on the graph. Is this a typical POTS thing, should it be noted? She finally just averaged it at 96 bpm since it would not settle after 5 minutes of standing without moving. Thank you for sharing your knowledge! Jennifer

Yeah, it is crazy what is genetic and what is not. Some of us are genetically programmed to stay up and watch the fire so that the wolves don't eat the children...you get the source of the name "firewatcher" now. I have been wallowing in my geekiness and many disorders that screw up the ANS also mess with the circadian clock. I wonder though, I have always been this way (phase delayed) does it predispose me to ANS dysfunction or have I always had an ANS dysfunction? Morning is just horrid for me, the juices just are not flowing the right direction yet. Unfortunately the only way that I do sleep well is to KEEP a strict schedule and get up every day at the same time, no naps, no sleeping in. I guess the constant state of semi-exhaustion maintains the clock.

Thank you! Bless you! It is a start! Tofu manicotti is nasty, plain and simple, and I am sooo sick of cooking two different meals a night sometimes (cooking is usually when my pulse pressure gets really narrow, too much standing, not enough moving.) I will look these up. Jennifer

Thanks tearose, I have looked at allergy diet books and the allergy and anaphylaxis site recipes, but the substitutions are what makes it all taste awful. The "diet" cookbooks use modern (soy) products and everything ends up tasting like beans. I thought that maybe over 3,000 years experience cooking without dairy would at least yield something slightly tasty. I just want wholesome, flavorful, main dish type recipes that are different from the everyday without being so exotic that my family won't eat them. As to the bigger bookstores, it is hard to get myself together to go to the local library, much less go downtown. Jennifer

Someday, we shall have this party and we will DANCE! Not this lifetime maybe, but in my hope for forever.

Amber, you talk about feeling horrid first thing in the morning and getting a second wind at night? Sounds like DSPS (Delayed Sleep Phase Syndrome) to me. Some of us (me included) are genetically hard-wired to be night owls...no kidding. This is what started me on this horrible path of self discovery. I have a circadian rhythm disruption, DSPS, that is extremely common in heart conditions and asthma (though I have neither.) We all work on an internal body clock, and some of us are set on the wrong time zone and it is almost impossible to reset it. I am willing to bet that many of our "crashes" are circadian. Of course the heart is going to work harder and the whole body will resist if everything internal is telling us that we should be asleep! But the clock and society tell us that we should be up and eating and going to work. Some things are voluntary (just like our nervous systems,) some are not. Mornings HURT, physically for me. My heart rate jumps from the 40s-50s to over 100 bpm when I get up and I am betting that some of that is because my brain is telling the rest of me that it is SLEEPING time! I have not seen any studies yet as to the circadian factor in POTS or ANS dysfunction, but it has to be there. Jennifer

Oooh how about those blow-up, moon-boot thingys that inflate and deflate over your feet and calves! I had those after my BP bottomed out after the delivery of my second child...they were great!

Lets have a POTS (with NO pity) Party! What would you bring if all the party participants were dysautonomiacs? I'll bring the hundred-gallon fountain of gatorade, salty pretzels and tiny bran muffins (no tofu manicotti, that's the other thread!) Next? P.S. I'll also bring the air tank, cause I don't think any of us could blow up balloons! Jennifer

Hi Everyone, I have been asking everyone I know, so I'll ask here too. I am looking for a Kosher cookbook, not because we are Jewish, but because my son has an anaphylactic reaction to all dairy products. I am so sick of cooking the same things over and over and want recipes that I do not have to rack my brain to alter. Not a matzo-ball, classic cookbook, but a modern recipe one. I can't just browse the books at Amazon and I don't want to order 5-6 books to find out that my kids won't eat sesame-mango chutney. None of my Jewish friends keep Kosher, and way down here in Georgia, the local bookstores don't have even one for me to look at. I'll take suggestions of bookstores with good selections in the Atlanta area, or names of books. Please.....of the five restaurants we used to eat at, two have closed, and two of the others only offer one menu item he can eat. Being on my feet and cooking is difficult, and I would love a little variety (tofu-stuffed manicotti is getting REALLY old!) Thanks so much! Jennifer

After hearing from three other doctors that you don't "just get" DI, my primary Dr. insisted that I go to a pituitary specialist. This last test was a blood/urine Osm that was going to be used as a base for the water deprivation test. The Dr. that was doing it said that my daily urine "dumps" when the dDAVP quit were due to overhydration, so I limited my fluid intake while off the dDAVP for several days as I waited for the lab order to be mailed to me. Anyway, it was late, so by the time I had the test it had been 6 days and I had lost 4 pounds and was not in good shape symptom-wise, but managed to concentrate my urine and my blood to almost normal levels (760 Uosm/ 298 Posm) He said that if I could concentrate to that level, no matter how long it took, or the circumstances, I had adequate ADH. It was just a question why and under what circumstances I could release it. He has heard of POTS, but I have not yet found any Dr. who knows more than what the letters stand for. I am one of those annoying patients that brings in articles for my Dr.s to read, so he understands that POTS can do things that look like DI, but that DI can do things that look like POTS. I really hope that Dr. Biaggioni at Vandy will have some answers, I just have to hang on till November. Thanks for letting me vent. My husband just gets this glazed look when I start talking medical stuff, so you are all my social support. Jennifer

In essence we are specialists, so we should command a higher co-pay! I know I had to learn a lot, really fast, and they don't teach you this kind of stuff in art school. After my last Primary Dr. sent me to a psychiatrist (who sent me to a neurologist) and told me (and my husband and another Dr.) that I was doing this for attention, I got mad. Then I went into "little red hen" mode and decided to do it myself. I had one doctor who believed that it was not "in my head." We know ourselves better than the doctors, and I know that I did not always feel like this! If we sound like doctors, I can certainly list a couple doctors who sound like idiots. Laughter is the best medicine, so take two and call us all in the morning!

Pass the punch and cookies, I'll come to your party! How can you possibly be getting attention if you can't be there? You know your body, so don't push too hard. Chin up, it will be OK. Jennifer

I don't know if it helps, but I used to have a crash. It started around 1pm and by 2pm it was all I could do to just put my head on the desk and sit there with the kids running wild. I could not think or carry on a conversation, it was like my body and mind just quit. If I could sleep it would help, but it lasted till around 5pm. Nothing helped. I have an afternoon slump now at the same time, but nothing as bad as it was. Hang in there, maybe your body will "reboot" soon. Jennifer

Hi Everybody! Just got back from yet another Dr.s appointment and I am soooo frustrated. This endo (#2) says it is not DI and does not really want me on dDAVP till we know what we are dealing with, however he is allowing half a dose once a day because my nephrologist and primary are insisting on it for symptom relief (so I can walk to the bathroom instead of run.) He has referred me to an older endo (#3) but I can't see him till November. My primary has lowered my Inderal dose to once a day because of supine bradycardia (41-48 bpm awake, who knows what asleep.) My head hurts constantly now, the tremor starts up again when the Inderal kicks out, and my pulse pressure narrows to less than 18mm/hg and my heart rate jumps up and around when I stand still. My primary Dr. did an orthostatic BP measurement today and my BP was OK, but the heart rate went from 61 supine to 101 upright (but it would not stabilize, it just quickly went up and down from 88-101, the nurse was a little freaked out, so she averaged it at 96.) No one is willing to give me a diagnosis of anything, but they are at least agreeing that it is not normal. I guess I'm not sick, I'm just not well. The knot at the end of my rope is getting frayed, no wait, those are my nerves. Jennifer

I am soooo sick of this "PRACTICE" of medicine, when do we get to the performance? I just saw my endo, who now says that it is NOT partial DI, but he's not sure...He wants me to see another, older endo to make sure (#3). Apparently after 4 days of water restriction of less than 50 ounces a day (many grey-outs, tachycardia and a loss of 4 pounds) and a 12 hour fluid restriction, I concentrated my urine to 760. I don't understand why he won't just do the water deprivation test with an ADH assay. This is insane. He has at least OK'd me to go back on the dDAVP, but at half a dose. This next endo can't see me till the week before my Vanderbilt visit in November and I am wondering if there is any point. Half my labs say DI and one says no, so I am still swinging at the end of my rope till November. AAaaaarrrrrgh!

I too had nausea, but after 4 months it settled out. My appetite is back, but the thirst is far worse. I just seem to borrow any fluid that I drink. Eat the best food you can stomach in small amounts and your appetite should come back. Have you had your electrolytes checked? That can definitely cause nausea. Jennifer