Simmy

Hi my4turtles, and welcome. While your heart rate accelerating out of control from exercise or climbing stairs sounds like it could be POTS, hitting 198bpm while sleeping does not. While there are many different symptoms involved, it is primarily defined by a rise of 30bpm or more within ten minutes of standing up from a supine position. One other possibility is Pheochromocytoma, which mimics many POTS symptoms, but not the postural tachycardia. You can learn more about it by searching the forum for "pheo". You can also find a POTS specialist in your area in dinet's physicians list on their home page. Here's the link: http://www.dinet.org/physicians.htm Document your heart rates, standing up and lying down, to give yourself a better idea. Good luck

I?m exactly the opposite, Issie. I get low bp when I stand and high bp when I lie down. I was diagnosed with the Epstein Barr Virus back in 1993, and about seven or eight years ago I discovered a recommended vitamin regimen to combat it, Including 3Kmg Vitamin C, Garlic, Acidophilus and 100mg CQ10. There is no doubt they helped to keep my monthly episodes at bay, but I wonder if taking them for so many years (and still do) has in any way contributed to acquiring Hypo-POTS two years ago. My PotsDoc is well aware of my vitamin intake and had me discontinue only the garlic. Interesting.

Pee... standing up.

POTS is most commonly thought to be caused by a virus, or trauma like a car crash, so yes. Possible.

I have to add to what kujiforo said. I often hear many of us reporting that they no longer sweat when they should. Like you though, I too used to never sweat, even in sweltering attics where I'd work for hours at a time. Since becoming ill however, I sweat up a river from the slightest temperature increase, and at other times for no apparent reason. I guess it all has to do with our screwed up thermoregulation, one way or the other.

I'd have five cents. Came close many times, but passed out only once, immediately after quickly swerving into a driveway. My warning sign was the loud buzzing sound in my head.

Sewing your own vest is a great idea, but I'd purchase the cool pack inserts from Coolsport (or similar) instead of using regular ice packs. The advantage is clear - regular ice packs freeze at 32 degrees, while the cool packs are filled with a "semi-liquid" that freezes at 62 degrees. Since the freezing point of the cool packs is much closer to ambient temperature, they refreeze much faster, and last much longer than ice packs. Typically, they can be refrozen in as little as 45 minutes in a freezer, or only 20-30 minutes in ice water. They also keep cooling for two to even three hours while worn in the heat, and the coolness is moderate and steady at 62 with minimal condensation, as opposed to the shocking cold of 32 with quick melting. Each of the four packs included in a set is comprised of 8 little squares (4x2), each 2 1/2" x 2 1/2", so the entire pack is somewhat flexible when worn, instead of the big solid block of an ice pack. You can get a set of four for $100.

Yes dizzyde. With us, the feeling of heat is exaggerated and our bodies are unable to compensate. It hits us like a ton of bricks. I imagine walking outside in 95 degrees for us to be equivalent to a 'normal' person walking into a 125 degree attic. On the other hand, going from heat into an air conditioned room is instantly relieving for me.

Good suggestion, futurehope. Although with her family history dysautonomia is a possibility, the first step is to rule out the most likely causes with a simple blood test, (with CBC).

Hi Sam, I'm sorry to say that the heat intolerance symptoms you described from last night are beginning to point to some kind of dysautonomia. She needs to be seen. In the meanwhile try to take and document her vitals on a regular basis (not neurotic, just daily, maybe twice daily at about the same time.) Data and trends are very important, especially at this early stage, if indeed that's what's going on. Good luck

Hi Tuesday, welcome. 10mg x5? Wow! That's a lot. A resting 44 is about normal for me now too, but now I usually stay below 120 while "just standing" for less than two minutes. What were your standing and supine heart rates before the Midodrine? Is the doctor who put you on the monitor knowledgeable about dysautonomia?

Based on tests performed by and conversations I've had with my PotsDoc, we agree that many of my exaggerated POTS symptoms are likely vasovagally mediated. He explained that the vagus nerve type of POTS tends to accelerate heart rate significantly faster than that of the parasympathetic type. He's now seeing an average of two new POTS patients a week and he's excited about soon getting some new instrument (I don't remember the name) that he says can differentiate between the sub types by precisely measuring the rate of change in some super-sensitive way. Sounds cool. If this is what's going on with your daughter, showering can be overwhelmingly difficult because she's standing the entire time and, due to gravity, the blood volume in the brain slowly diminishes. To make matters worse, she washes her hair with arms above her head for a period of time, which further stresses the autonomic system by trying to push blood even higher than her head. The body protects itself by becoming horizontal by any means, even passing out. I use a shower stool and even that exhausts me. The Gatorade will only make a difference if the increase is substantial. I drink between 3 and 4 liters a day. The effectiveness of Gatorade is also greatly enhanced by combining it with a higher salt intake, as the combination of the two is what boosts overall blood volume, but too much salt can lead to high blood pressure and everyone is different, so just how much salt is to be added should be determined by her cardiologist and blood pressure needs to be monitored. You may feel as though you were a bad parent, but who's going to bat for her now? Give yourself permission to forgive yourself because you didn't know any better and it was certainly not done with any malicious intent. I'm sure she already forgave you. She is as alone in this as the stars are in the sky - all very far apart, but many. Stars don't have the internet though.

The head symptoms you described are likely not from stress, but instead you got it right the first time, lack of oxygen to the brain. That's what POTS is all about - for a variety of reasons not enough blood gets up there and symptoms begin, including your heart trying to compensate by beating faster. Yawning too is a way the body naturally tries to get more oxygen in. I find that I yawn involuntarily mostly right after I lie down after performing a strenuous activity (like walking up a flight of stairs) and I'll have two or three deep, quick yawns in the span of five seconds. While you're waiting to see a doctor you can try some other things to combat the symptoms, like drinking lots of Gatorade (for the fluid and electrolytes). Most of us add lots of salt to our daily diet (some more than 5 grams a day) and while I can't advise you to add anywhere near that much, adding a little for now could help, just watch for high blood pressure. Many rave over compression hose because it keeps blood from pooling in your legs, and even your abdomen, if indeed your problem includes pooling. The one maneuver I've found to be most helpful when the tachy is getting out of control and I cannot lie down, is to squat, balancing on your toes, with the heels of your feet touching your butt. This position instantly compresses the vessels in your legs and squeezes the blood back upward. Try it the next time you're in tachy, if it slows your heart rate by 30bpm in less than 30 seconds, blood pooling is likely. But rising from a squat must be done slowly, inching your way back up, otherwise you'll go right back into tachy very quickly. For the advanced user: While squatting, grab the underside of your legs with your hands and pull your stomach downward toward your knees. This squeezes the abdomen and pushes more blood up. Caution though, as that drops heart rate so fast that it could be too fast, and I've felt some minor heart pains afterwards, but for me worth it to get the tachy and head pressure to stop so quickly. I routinely drop 60 or more bpm in less than ten seconds when I need to.

Obviously, getting accurate numbers (standing, sitting, supine) is the key. Blood pressure is certainly important but in this case heart rate is crucial, so as Shan said, do it manually for now. Tracking the numbers for a little while will greatly enhance your ability to make a better educated guess as to what might be going on. I would be interested to know if she has ever experienced something like this before, even in a somewhat milder form. She might remember that night a week ago when she felt 'weird' going to sleep. All clues count, we of all people understand that. As a father of two teenage daughters myself, I find the need to remind you that there could be other "things" that could cause the heart to behave abnormally. Not that your little angel has done anything she shouldn't have, just sayin'... you need to investigate and eliminate all possibilities. I hope she's better and does not have to go through what we do.

You mentioned rolling over in bed and heart rate going crazy, from doing almost nothing. That is normal in POTS, particularly if it is vasovagal in origin. Our heart rates tend to accelerate and decelerate much faster than others, which includes spikes from any little movement, even talking too loudly. Don't be surprised if your heart rate jumps 20 or even 30 bpm from sneezing a couple of times. Take the advice tearose gave and use a heart rate monitor so you can learn what makes it better and what makes it worse.

Those numbers sound much more reasonable. My initial concern was that your sitting heart rate on the med was 61, which led me to think it might be in the 40's lying down. We're told to be aware of possible blood pressure spikes on Midodrine when lying down, which also means lower heart rates, so just keep an eye on it. I wouldn't be concerned unless it fell into the low 40's while lying down.

Again strange, Midodrine raises bp. Odd that it's lower after taking it. You said that your heart rates sitting are about 115 off meds and about 60 after Midodrine. If you don't mind my asking, what are they standing, and what are they lying down? Both with and without Midodrine.

Oh, it is working, just perhaps too well. That's a seriously monstrous drop from just the Midodrine. If it's 60bpm sitting after taking the 5mg, what is it lying down? That change in posture could easily drop it another 10 or even 20. I've been at a lying down 47bpm average for some time now and my cardiologist isn't concerned unless it dips below 40. My lowest recorded awhile back was 37. And no, it's not a fun feeling when it gets too low. Have you also checked your blood pressure?

Heat intolerance is huge for us, it makes it feel like our skin is burning, makes respiration difficult and raises heart rate. I use a Coolsport cooling vest when I go out in the heat for more than a couple of minutes. This past weekend it was 98 here and I went outside in my cooling vest for half an hour. Before I went out I took my body temperature, 98.8. When I came back inside I took it again, 100.4 and that's with the vest. It took over an hour to get back down to 98.5. Without the vest I wouldn't have lasted five minutes.

Hi Shan, welcome. When you say the Midodrine drops your heart rate from 115 to 61, is that both while standing or lying down? Either way, if both those numbers were taken in the same position (posture), that's quite a huge drop from just 5mg of Midodrine. With my five POTS meds I'm lucky to keep my standing heart rates down from 150 to 120, which also means my resting heart rates are down from 65 into the 40's, that's mostly when I feel those minor heart pains.

Hi Casey, welcome. If it is vasovagal, a trigger could be simply standing. I don't know how long you've been browsing or how much you've learned from this site about what you may or may not have, but your symptoms sound like a vasovagal episode. They also 'sound like' either a vestibular issue, anxiety related, a drug overdose, a drinking problem, Oppotoetitis, out-of-body experience, alien abduction, or the newly named "Grinch Syndrome" (aka. POTS). The point is, although it sounds like something, it could be anything, so have the right tests done. Do you have a follow up appointment with someone? Neurologist, electrophysiologist, endocrinologist, cardiologist? Someone hopefully familiar with dysautonomia. You can begin with some simple tests at home, as simple as lying down for fifteen minutes and then checking your pulse, then standing up and checking it every minute, up to ten minutes or if you feel too dizzy to continue. If you have a blood pressure monitor, even better. Please have someone with you to check your pulse, write it down and keep an eye on you. If it rises by more than 30 beats per minute standing up and goes back down when you lie down (or, in rare conditions drops substantially when you stand) you could have POTS and need to find a specialist. Don't be ashamed of what your body does to you, seek answers. We're all here to help any way we can.

Yup, me too, crazy quick vertigo-like feelings, electrical buzzes, shakes, rattles, rolls, snaps, crackles, pops. We're all in the same leaky boat. I'm on Mestinon, Midodrine and Florinef (Fludrocortisone) amongst others. Midodrine helps, but definitely raises bp too high sometimes while lying down. The great advantage of Mestinon is that it does not raise bp while lying down, but only when standing. Perhaps you and your doctor might consider raising it to a full (60mg?) instead of half. I was also at 30mg x3, then raised it to 60mg x3, but then dropped it to 60mg x2 because of late afternoon stomach cramps. Lots of trial and error.

Yes, Potsie's sometimes have a day, or even a few days in a row, feeling miraculously better. For years we've all been trying to figure out why this happens and while there are multiple, logical theories, we all still really don't have a clue. Just enjoy them when they occur and try not to overdo it, lest you pay for it the following days. I'm glad you finally have an appointment with an "EP specialist". As you know, we all recommend seeing a POTS specialist, but many don't have the means to do so. At least you're heading in the right direction and standing up for yourself (maybe better to say, lying down for yourself), but don't give up, the answer is out there, you just have to find it. Putting this "in God's hands" is not the answer. Those who believe also say "God helps those who help themselves." You must help yourself. You can start by documenting your symptoms at home. If you suffer from classic POTS symptoms, like >+30bpm when standing, the very best way to document this is to video record your heart rate and yourself, standing up from a reclined position, while wearing a relatively inexpensive chest-strap type heart rate monitor watch, like those used for exercise. You can buy one for less than $60, or maybe borrow one from a friend. Use the video camera on your cellphone to record it jumping when you stand and dropping when you lie down. Video doesn't lie, exaggerate, or make things up. If you're like me, your hr will go from 60bpm lying down to over 120bpm standing in less than 30 seconds, and drop at an ever quicker rate, so try to keep it under two minutes in length, as doctors have little time and even less patience to watch videos with patients. If you show up next time and there's no tilt table, but rather only a treadmill for a stress test, don't leave angry, instead work with what you have. Before getting on the treadmill they first hook you up to all the wires while you're seated. If there's something on which you can lie down while they hook you up, insist upon lying down! If not, scoot down in the chair and elevate your feet during hookup. Either way, remain in that position for at least a minute, remaining absolutely still and calm. Your heart rate will be much lower than while standing. Insist that they observe and write down your reclined heart rate and blood pressure. When ready, stand up, but DO NOT walk. Wait. Watch your heart rate on the monitor and have your bp taken again. Only after that may you begin the "stress test" that we all know will show you to be just fine and dandy. If you also suffer from blood pooling in your feet, there is one more thing you can do to help yourself, raise their eyebrows and perhaps drop a jaw or two. At the end of the test they put you in cool down mode for a short time before coming to a complete stop. In my case I was back down to about 120bpm while walking at about 2mph. I said "hey doc, look at this" as I moved my feet to the side and just stood there. The look on his face was priceless as he saw my heart rate rising to beyond 140bpm standing, then I got back on and started walking again and it dropped back to near 120bpm again. Blew his mind. You can only use that which is available to you, but use it wisely. Good luck.

I agree, call your old doctor and ask to have the relevant info faxed to your new doctor. I don't recall exactly how many feet it is, somewhere between 20 and 100, that if you must stop and rest within that distance you meet the criteria for a plate or placard. No shame, I got my placard, but had to wait in line (squatting) at the DMV to get it The lawn chair is a good idea, but I finally got my doctor to prescribe a reclining wheelchair and my insurance covered part of it. You can imagine the looks I get when I'm wheeling my way back to my car, stand up, fold the chair and lift it into my trunk, then walk around and get in. But there's no way regular people would ever imagine someone having an invisible illness that allows them to do things, but only for 30 or 60 seconds at a time. Their dumbfounded expressions are not their fault. The handicap definition includes us. We deserve to use the tools available to help make our lives just a bit easier.

I completely agree with houswoea. Children do not yet possess the ability to predict the consequences of their actions. When it comes to an activity that, at that very moment, they don't want to do, telling them doesn't work and neither does showing them, only their own experience connects the neurons in their brains to create a lasting memory of cause and effect. If you keep telling a small child to be careful of fire and not go near it the child will develop a fear of fire. On the other hand, the very first time the child touches a flame or a hot pot the memory is instilled and respect for fire is learned rather than fear. If your kids are old enough to use utensils they are also old enough to rinse them out after eating. I wonder what would happen if there were no more clean dishes or utensils and you said, "Lunch is ready, if you want to eat, wash a dish." Certainly the older two can handle it. Initially there will be yelling and tantrums, but you must be prepared to stand your ground. It will get worse for a little while before it gets better. You have to remember, the worst that will happen is a few minutes of screaming until they calm down, or a refusal to eat. So what? Is it really a big deal? They won't starve. They'll say they hate you, but you know the truth. Your job is to grow little humans into good adults, not to be their slave. May I suggest the book "Family First" by Dr Phil. After many years of putting his methods to actions I'm glad to say my kids have matured into well-adjusted happy teenagers who do their chores willingly, without prodding, with a sense of accomplishment and pride in helping their ill father. The techniques really do work, but one of the keys is to be a united front with your spouse. If he relents and washes a dish for one of the kids that is capable of doing it on their own, credibility is lost and instead they learn to divide and conquer. I don't know whether or not your husband can be brought onboard, but either way the book can help you and your family. You cannot care for them until you first care for yourself. Good luck.