Merrill

There are a couple other categories people might fall into... as an aging mom-wannabe undergoing fertility treatments, I'm kinda sensitive to this topic (but also curious). There's the many adoption options, of course--do you have (adopted) children, and did you decide to adopt despite the difficulties you face with POTS or other dysautonomias... Would you adopt, given your symptoms, rather than cope with the additional difficulties pregnancy inevitably brings... Then there's the "try to" phrase I subconsciously added to the questions... Sorry--Waaayyy overtired over here, due to too many hormones, insomnia and other sleep disturbances, ridiculous stress at work, husband out of town, and unresolved and terribly stressful aging parent issues... peace, merrill

Floaters were once explained to me as a collection of extra cells that may get reabsorbed by the body at some point. Here's what WebMD has to say on the matter: http://my.webmd.com/content/pages/15/96143...C-9531713CA348}

Hi Nina -- I thought I'd reply in case Dizzy doesn't check the board again real soon... Sue mentioned "a new drug Focal" in the 3rd line, second paragraph, of her original post. m

CONGRATULATIONS, Nina!!!!! What an accomplishment! I've said it before and I'll say it again: you're an inspiration. Now get out there and enjoy the sunshine and your lovely garden. (I thought of you today as I planted my impatiens...slowly and with heart a-pounding, I got it done! Yay!) Cheers, Merrill

Morgan, glad to hear you're getting more information about what's going on with you! My cardiologist mentioned MVP as a possible cause of my tachycardia before running all the tests (stress echo and the autonomic tests that confirmed pots). I didn't have mvp... I don't know anything about the connection between mvp and blood pressure, but it sounds like you're on track to find out! Good luck, m

Oh, Jessica, your post makes me so sad!!! I'm so sorry you've been having such a hard time lately--I didn't realize it had gotten so bad! I was thinking the same thing Morgan was about possible reasons for your doctor's change in behavior ... but knowing the causes doesn't help so much if the effects are the same! Hey, I just wrote that last sentence as I was thinking about your doctor and why you're having so much trouble getting in to see him. But as soon as I typed the exclamation point I realized that the same could be said for what's going on for you physically. You sound eager to find out how you contracted POTS ... With many symptoms, I think, if you find the cause you can begin the cure. But with autonomic nervous system problems, it seems like you can just WAIT and treat the symptoms as best you can. There's nothing I can do, for example, to make the veins in my legs constrict when I stand! So I do the basics, wear compression hose, drink a ton, keep electrolytes up, and salt my food like crazy. It helps some, and some days are more exhausting than others. I guess all this is to say ... Take care of yourself as best you can these days, and have faith that your situation will improve. Sleep when you need to, let others help as much as they can, and do all those medical (florinef--the dose you tolerate) and low tech things you can to help ease your way. (If you're sleeping at ton, you may be more dehydrated than if you were up and moving and drinking every step of the way.) (Any chance someone can push you in a rented wheelchair at the zoo tomorrow? I know how much you want to be there with your son and family...) Be well, stay cool, and I hope you feel better soon. Merrill

Yes, I've got floaters. So does pretty much everyone I know. They're harmless--completely benign and not a sign of nerve damage or any other bigger problem (pots or otherwise). Hooray!

I don't think you can figure out whether you have mitral valve prolapse on your own and/or on the basis of your symptoms. I think a heart scan (aka echocardiogram), which is an ultrasound of the heart, is required for that. Probably best to be combined with a stress test (walking on a treadmill for set amount of time ...) First they'll do a scan of the heart at rest and then repeat it after hr is elevated on the treadmill. POTS is typically diagnosed with a tilt table test. Do you faint? (That would indicate NCS, right?) Your doc at Johns Hopkins is a cardiologist, yes? (a fantastic place to be treated) Best, merrill

Thought I should add a positive note Re: antibiotics -- I take them when needed (I'm on doxycycline right now, in fact) and have no problems ... That is, they don't increase my POTS symptoms. If you've had an infection for such a long time, your body is obviously unable to fight it on it's own--and you need antibiotics if you're to be cured of it. If you take them (and clearly you should), you may be shocked at how much better you feel in only a few days! (Be sure to take every pill in the prescription.) As Nina said, there's no evidence that shows that POTS people suffer more possible negative side effects from antibiotics than the rest of the population does. Be sure to take the pills with food (which is typically as directed) to avoid possible stomach trouble. Good luck with it, m

Re: the last couple lines of original post -- I don't think people who feel better (or who have "recovered") visit this site anymore. And not everyone w/POTS has a computer and/or the personality or desire to chat in a forum like this one. You've got a very small sample here--of the 500,000 or so cases (I've read)... I think there's probably more (undiagnosed) out there. As for me, I'm 42 and I've had it since adolescence with no known precipitating cause/virus etc. I know I have this condition, I cope with rthe symptoms as best I can without medications, and I live a good life. Handling the other stressors life hands us sometimes feels like more than I can handle--but I DO handle them. You can too--just relax, take life one day at a time, and do like Amy: rent season 1 of Curb Your Enthusiasm and watch it regularly when it returns in the fall!

I was wondering how many people on this board know that they have sleep apnea, either because their partners have noticed that they stop breathing but start again quickly during sleep or because they've been diagnosed through a more formal sleep study. I'm headed for a sleep study myself next Wednesday, and I'm curious... And if anyone (read: Michelle/Nina?) know of any articles on the topic of the effects of POTS on sleep, I'd love to read more... Thanks, m

PS since Deb mentioned it: I wear Mediven brand -- I'm 5'7" -- I found another brand I tried to be too short ... so if you talk to someone in customer service at the site/company Nina recommended, make sure you buy a brand appropriate for your height and weight.

Hi, Sue. I'm glad to hear that you and your family have worked out a way for you to rest at home with company by your side... It must feel very reassuring just knowing that people who love and care for you are helping you heal following that awful hospital stay! I know you'd be there for them if your situations were reversed. I don't have NCS so I can't comment on the drug piece; I don't know what you're going through, but it sounds incredibly challenging! May I throw my 2 cents in about the compression hose since you brought it up? (I've written about this in response to other posts; people are probably sick of hearing me say this...) I wear the thigh highs every single day, about 16 hours a day, and I can't stand NOT having them on! I wish I could sleep in them, but the doc said not to. My grandma never wore em, so I don't have that association... and my husband seems to find them a bit sexy! Honestly, though, I hope you'll get up the gumption to try em--you may be surprised at how fantastic they make your legs feel... more lively, more energetic, more powerful. I don't even mind wearing them when it's hot out! (I was shocked to discover this myself, but they really do help.) Give em a whirl when you've got a girlfriend over and you can just laugh at how absurd life can be sometimes. Then put a cute pair of jeans on over the top and no one else will ever know your little secret. Let me know how it goes! I hope you feel better soon, Merrill

Morgan -- couple thoughts -- re: numbness -- I once had my right hand go so dead that it could not feel that it was being touched by the left ... my left could feel the dead right hand, though, and I thought I was living a horror movie. Scared the ***** out of me! It hasn't again been quite that "dead," but yes, numb, very very numb. Both arms/hand. Yech. My daytime heart rate is typically higher than yours -- much -- but my holter showed a nighttime low of 67 bpm. The drop in heart rate during sleep is normal for everyone ... and for people like us with pots and high heart rates during the day, it's normal too; the drop in heart rate is what helps to distinguish us from inappropriate sinus tachycardia patients. I wouldn't think the slowing of the heart would wake us up... Dreams, yes!!! Maybe our brains are processing and integrating all the physical crap we go through--and it's enough to wake us up with full-blown symptoms! What a pain, huh?

Thanks for writing back so quickly! You guys are up and at 'em early! I'm not taking any medications... tho last night at 1 am I took 1/2 of one tylenol pm b/c I slept 2 hours and woke up, unable to go back to sleep. (I've done that about once a month, maybe two, for a few years with no ill effects. It's such a teeny dose but enough to take the edge off the chatter and calm me down.) I haven't had a sleep study done, but I'm increasingly curious about doing so, especially after reading about them--and the difficulties POTS people have with sleep--on this site. (I wonder too, though, whether the findings would only make me more worried about my sleeping--are there no-drug treatments for sleep apnea or other disturbances? I'm about to go through in vitro again...) In addition to this (oh, please G-d let this be a one-time thing!) I have been having other annoying symptoms during sleep, most notably numb hands and arms that wake me up (or I just wake up frequently and realize my hand/s and/or arm/s are totally dead). Grrr.... Thanks, all. m

This is hard to describe, but during the night last night, in the early morning hours, I went from sleeping soundly to sitting bolt upright gasping for air...sort of coughing, gagging, pulling at the air. Of course my heart was racing, and I could feel the blood rush, pooling into my legs (as I had swung them over the side of the bed). VERY strange and extraordinarily scary. This has never happened before (though I'm no stranger to intrerupted sleep as well as insomnia). Anyone know what could have happened there? Thanks, Merrill

I'm just back online and catching up with some posts after a few days away from the computer---So to Sue's daughter and family--and to SUE--I'm so sorry you've been going through such a rough and scary spell! I'm glad you wrote to us and let us know what was going on! I too will keep you in my thoughts and pray for healing. Keep us posted, Merrill

Julie (and others), I wonder if you've tried (or thought about trying) acupuncture treatments for this horrible gut stuff you experience? (I haven't, because I don't have this problem, but I understand that acupuncture can work wonders in this and other arenas...and it seems like Western medicine just ain't doin' the trick for you right now.) all the best merrill

VB--on the basis of your posts here and earlier, I'd say it sounds more like you have IST than pots--but I'm not a doctor! I also don't know whether you've had the tilt table test, which is the test considered diagnostic for pots. Have you had the ttt yet? You might seek that out if not. I don't know very much about possible treatments for IST; sinus node ablation is one of them, and you've mentioned that. Does it ever resolve itself on it's own? That's a question for your cardiologists, I think. best, m

Veryblue, have you worn a 24 hour holter monitor yet? I can't remember whether you've said that you've seen a cardiologist (or electrophysiologist). If not, you need to get to one soon--and they need to monitor your heart rate continuously for 24 hours or more as you live your normal busy daily life and rest at night. People with POTS can definitely have episodes of fast heart rate during the night and while lying down. I know I do, and I also wake frequently during the night. (You should have called me last night--I was up! ) I, like so many others with this and without this syndrome, have very very vivid dreams--and those can kick off an episode of rapid heart rate while lying down. The stress of frequent awakenings and the worry that comes from not being able to fall back asleep--along with the conscious perception of other pots symptoms (like for me, numb hands, arms, and/or feet) can also make the heart race. It's not the case, then, that people with pots can't have rapid heart rate when lying down. But it's also true that people with pots do have lower/normal heart rates during sleep--it's just that there are occasional episodes where the rate increases. It IS the case that people with inappropriate sinus tachycardia DON"T have lower heart rates during sleep. IST people have high hr all the time, as your doctors have said. I hope this makes sense -- take care, Merrill

Sorry you're veryblue! You may want to spend some time learning about the differences between POTS and Inappropriate Sinus Tachycardia on this and other web sites and/or at the library. (You could even read some of the questions and answers that go back more than 30 days on this site--around the first of April, Thisblows came to us looking for answers, and it appeared that she suffered from IST and not POTS because her heart rate didn't go down during the night or while lying down.) If you haven't done so already, you may want to seek the advice of a cardiologist, who can run a number of painless tests to see what's going on. Wearing a 24-hour holter monitor will show whether your heart rate decreases when you're sleeping (typically the case for pots people, but NOT the case for people with IST). A tilt-table test will show what happens to your heart rate when you go from lying down to typically a 70 degree angle. Pots is usually the diagnosis if it's 30 beats per minute or higher in the first minute. (They watch your blood pressure too, but people with pots do not all have high or low blood pressure... ) good luck, m

I posted this at the end of a different email chain ... but here are my ideas about your question: No, not everyone with POTS has heart problems--and here, I assume you mean structural problems with the heart. The tachycardia that comes from pots (the "T" in pots) is not considered a heart problem. I had a full battery of cardiac tests when I was diagnosed with POTS (via tilt table test, which is the diagnostic test) and other tests of the autonomic nervous system. They needed to determine the reason for my tachycardia and rule out inappropriate sinus tachycardia (IST), cardiac conditions that can cause rapid heart rate, and other health problems (thyroid, tumor on adrenal gland, etc.) Mine was structurally sound and healthy and of normal size and all that. The heart's response to insufficient constriction of the veins in the legs upon standing (or even sitting up for some people), which is controlled by the autonomic nervous system, is to beat fast to get the blood back up to the brain and upper extremities. Sometimes the heart's response can be exaggerated, beating faster than it would need to. (It's all rather complicated...) And I know that some people with POTS do have structural problems with the heart and other heart conditions. But it is certainly not the case that everyone with pots has heart problems. For a number of people (and perhaps in your case), surgery can be a trigger for pots symptoms; statistically, these people get better in a few years. Hope this helps, Merrill

No, not everyone with POTS has heart problems--and here, I assume you mean structural problems with the heart. The tachycardia that comes from pots (the "T" in pots) is not considered a heart problem. I had a full battery of cardiac tests when I was diagnosed with POTS (via tilt table test, which is the diagnostic test) and other tests of the autonomic nervous system. They needed to determine the reason for my tachycardia and rule out inappropriate sinus tachycardia (IST), cardiac conditions that can cause rapid heart rate, and other health problems (thyroid, tumor on adrenal gland, etc.) Mine was structurally sound and healthy and of normal size and all that. The heart's response to insufficient constriction of the veins in the legs upon standing (or even sitting up for some people), which is controlled by the autonomic nervous system, is to beat fast to get the blood back up to the brain and upper extremities. Sometimes the heart's response can be exaggerated, beating faster than it would need to. (It's all rather complicated...) And I know that some people with POTS do have structural problems with the heart and other heart conditions. But it is certainly not the case that everyone with pots has heart problems. For a number of people, surgery can be a trigger for pots symptoms; statistically, these people get better in a few years.

Cathy, I wonder whether you would find that cooling neck wrap useful in cooling you down when things heat up? (See my response to Sue on earlier post for details.) Once activated, it stays cool for a few days (and is reusable); you could take it with you wherever you go and have it on hand if the heat response is triggered. Best, merrill

tinksflight, I don't think there's a drug specific for the blood pooling in your legs, but you sure can get relief by wearing compression hose! Get your doctor to write a prescription for em and get em at a medical supply store--they'll be covered by your insurance that way. (See other posts on this topic... most people with pots wear them.) Maybe you're already doing this, but since you didn't mention it on your post, I thought I'd make the suggestion. Cheers, merrill