calypso

Steph - I am on 25 mg metoprolol 2x/day. I have an appt. next week so figure I'll discuss things then. How pots doesn't damage the heart is beyond me. My cardiologist said you can definitely get tachycardia-induced cardiomyopathy if the heart rate is not controlled. I assume you mean pots won't hurt you if the heart rate is controlled? Jessica - I just e-mailed you back. Sorry I took so long! I developed pots after I had my daughter, and yes, I did recently cut out a feeding or two. So maybe the breastfeeding is keeping my pressure up somehow. It also is hot here; only in Wisconsin does it go from 40 degrees to 88 in a matter of a week or two. I know you guys don't want to hear this, but I'd rather have low BP than high ... so long as it doesn't make me faint. I know low BP if severe can lead to lack of blood to the brain and such, but I am more scared of heart disease. Thanks for the feedback.

Danelle, Please, whatever you do, DON'T GIVE UP. You may not have total control over your body, but you do have some ... you have your mind. And it is a very powerful thing. You have the ability to find another doctor, one who will listen and advocate for you. There are tons out there, you just need to find the right match. I know how it feels to have your relationship suffer. My husband's patience is wearing thin, I am sure. Maybe you can try to gather all of your energy and get out for an evening sometime soon. You don't have to go dancing, but maybe a movie or a picnic (cheaper and more romantic). Please try to think of as many good things in your life as you can. I know it may be hard but I am sure there are some. Keep doing whatever it is that makes you feel good, whether it's eating ice cream or watching a funny movie. Amy

I can't believe this ... after six months of high blood pressure, I now, just in the last few days, have developed low blood pressure. I was instructed by my doctor to check my BP twice daily since I had my daughter, and it's usually been in the 130/80s range, and rarely below 110/70. Now it's 88/62, 90/70, and even 85/75 one time. The pulse pressure seems to narrow (as my systolic goes down, my diastolic goes up). I think I recall someone (maybe you, Nina?) saying this is common with POTS. But then I checked it a few nights ago, on the same day that it was low in the morning, and it was high again. I don't understand how you manage BP when it's like this. I obviously want to prevent any damage to my heart from the high BP, but I don't want to feel like crap and dizzy with the lows. Does BP have an evening-out effect on the heart? For instance, if you have highs and lows but your average BP is normal, does that still do damage to the heart over time? Amy

Thanks for all of your feedback! I swear I learn more here than after seeing five different specialists. My BP stabilized for a month after the delivery too, then I had a few labile hypertension episodes of 140/100. I am just afraid that if I take any more BP medicine, the BP will start to bottom out when I stand up. I bet that when I stop breastfeeding I should notice some changes for the better with my body -- I think a lot of my energy is going to making milk rather than to healing myself. I am exercising a little (four days a week of 40-minute speedwalks with my daughter strapped to me in her carrier), and it's difficult, but I do it faithfully. I would like to jog but every time I try, I get chest pain -- which my doctor assures me is "not my heart" (no, it's just a total coincidence? No way). You guys are just great ... especially for newbies like me who just don't know what to expect. Amy

I know, I will have to see how the Effexor changes my BP. I am hoping that if I have less anxiety, it will even out somehow. Also, the research so far shows that Effexor only causes the BP increases if you are on a dose of 225 mg or more; I am sensitive to meds so probably won't need more than 75 or 150. But thanks for the warning.

Well if oxytocin is a vasoconstrictor, then that's good ... because maybe it will bring my BP down. I definitely don't have a problem with low BP anymore, just high! Thanks for that piece of info. Amy

Hmm ... maybe hypertension with POTS is not so uncommon after all. Deb, may I ask your age? If you are over 35 I guess it would not be as inconceivable that you may truly have some hypertension. Or maybe you developed it because of the years of abuse POTS has put on your blood vessels -- I have to think that over time we are all going to get hypertension because of the stress POTS has on the cardiovascular system. But I remember you saying you are quite thin, and that's odd. I am also really thin and am only 28, so I guess I am trying to find a reason for the hypertension rather than just accept that I may have it for life. I think many doctors don't look for causes of hypertension as much as they should and just treat the problem. I am sure my hypertension is related to the POTS, but I just don't know how, and I still have hope that if the POTS starts to get better, so will the blood pressure.

I was exhausted beyond belief for the first month I was on the beta blocker, then it seemed to improve. Now I'm not sure if I still get tired in the afternoon from that or from the POTS. So I'd suggest a week or so of enduring the side effects and see how it goes. But if it isn't controlling the heart rate at all, then that's no good either, and I'd tell your doc immediately.

MomtoGiuliana, How long did your BP run high for? Did it go down immediately with the beta blocker or did it take awhile? I started 25 mg of metoprolol 2x/day five months ago and even with that, my BP still runs above the normal range -- 120-135/80-88. I did have pregnancy-induced hypertension and the POTS came four days later, but I did have a period during that first month where my BP was normal. It was like my BP normalized from the pregnancy, then started getting screwed up again. Before I was pregnant, I was a typical POTS person -- my typical BP was 85-105/50-65. And how long would you say your POTS was "full-blown" before it started to improve even a little? I am just trying to piece this all together without trying to make my primary care provider run every single test. He thinks I am just having "stress," although today he agreed to run a 24-hour urine for pheochromocytoma and another thyroid function test. The fact that I have this constant muscle weakness and swelling all over my body, plus shortness of breath every minute of the day, makes me think it's not POTS and that something is being missed. I suffered from panic attacks when I was 18 and went to college, and of course once that's in your chart, it's an easy diagnosis for anything. But interestingly, through this whole POTS experience, I've had just 2 panic attacks. And it's probably because I had to stop my anxiety meds prior to pregnancy and can't resume until I stop breastfeeding. Amy

I've had headaches, vertigo, lightheadedness, bone aching, the prickly feeling/parts of my body easily falling asleep, goosebumps (I often get an odd sensation that the hair on my head is standing up on just the left half of my scalp), complete exhaustion & brain fog pretty much daily since the POTS started. The second month I had POTS my muscles twitched pretty regularly, but that's now gone and instead I just feel like my muscles tire out with little exertion and feel very weak all the time. The bone aching just started a couple weeks ago -- I feel the bones in my feet aching, and it makes me feel like I have butterflies in my stomach at the same time. That's a weird one. More weird stuff for our totally bizarre bodies. Amy

I am wondering if any of the few of you who have hypertension with POTS have seen either Dr. Grubb or any of the specialists at a major clinic (i.e., Mayo, Vanderbilt). I am wondering whether they screened for any other diseases before deciding it was for sure POTS. My neurologist is a pretty good guy, but he thinks he can handle my case and that I don't need to be seen by one of these specialists. But I feel that hypertensive POTS seems VERY rare (POTS in and of itself is fairly rare, and I only recall a few on this Web site who also have high blood pressure), and I want to be absolutely sure that I don't have something else going on. So if you have high blood pressure and POTS, I would like to know if there were any other illnesses that could cause these symptoms -- aside from adrenal tumors.

I have the exact same breathing issue, plus I have an inability to take a deep breath even when I sit down ever since I started having POTS. Frankly, it *****. None of my doctors can put their finger on it either. One even suggested I was hyperventilating in response to the racing heartbeat, but the shortness of breath was actually my first POTS symptom. It was only when I took my pulse did I realize that is was like 130 just getting out of bed! The only thing that helps me breathe better is exercise. After I exercise and stretch my chest muscles, I get a tiny bit better, but not much. It's easy to take breathing for granted until it becomes challenging! Hang in there . Amy

I think in my case, the POTS is causing my weight loss. Sounds like with others here, the weight loss can make POTS worse. I feel like my body is in overdrive; my heart is racing, my blood pressure's screwy (mostly high), I'm burning calories faster than I can keep up eating. If I didn't have high BP, I would probably enjoy the eating part more, but now I feel like I have to worry about eating too much fat.

My doctor suggested that I might benefit from Effexor a couple months ago but I haven't been able to take it yet because I am still breastfeeding my daughter. But now that she's eating some solids I am thinking of weaning her and trying it. I have heard a few horror stories about this drug in particular; I took Zoloft for six years, from age 20-26, with the only side effect being decreased libido. But Effexor is supposed to work a little differently. If you've tried it or are currently taking it, could you fill me in on what I might expect? Also, what was your dosage? Amy

Glad you found a home that better suits your needs, BUT doesn't it frustrate the heck out of you to have to be thinking of living in a one-story home when you're young, and these are supposed to be the best times of our life? AAAAHH! I know, wasting energy on getting mad isn't going to help you ... but it sure makes me want to smack people who complain about how their grass grows too fast, or their kid got a B instead of an A, etc., etc. Anyway, enough rambling ... it's good that you'll be living how you want to live! Hopefully the POTS will go away for you and you can go back to not having to adapt your life so much. Amy

I too am thin, but was pretty normal weight before POTS struck. However, I have always had a stellar metabolism and can eat anything I want. Now I'd give anything to gain a few pounds back. I am not, however, a muscular person ... I would bet I carry much more fat than muscle and I have never been a strong person. What I can't figure out is why I am hypertensive at 28. I definitely don't have EDS! My family doctor swears it happens that young women rarely get hypertension, but I spent most of my teen and college years on a vegetarian diet and have never really been drawn to fatty foods. I have never been an exercise fanatic but have always been moderately active and played sports in junior high and high school. I kind of hope the hypertension will improve when the POTS goes away. (I say "when" in hopes that it will at least recede at some point!) I still think I have some weird adrenal issue going on but no one will do a 24-hour urine. Amy

I went to the rheumatologist today for my autoimmune disease evaluation, and he said that although I have something weird going on, he feels pretty strongly that it's not lupus or Sjogren's or anything autoimmune. He didn't know much about POTS but thought that in theory, if you blow out your autonomic nervous system, it will make you lose muscle and weight, as well as cause weakness. So that was good news, but again I don't know what else to do to stop this weight and muscle loss. I am eating so much, and I am exercising plus lifting weights to try and maintain the little muscle I have left. I have decided I will try acupuncture this week, too, figuring it can't hurt. I can't take Florinef or Midodrine b/c my problem is actually high blood pressure, but I am drinking lots of water because I figure that can't hurt either. Thanks for everyone's support; this is a really odd illness and I am still convinced it's got to get better over time. Amy

I get the red splotches -- however, I've always gotten these when I get nervous, embarassed, when I drink even one sip of alcohol, etc. So maybe it's my body's own sensitivity to anything unusual. I agree with Nina that it involves histamine. It seems harmless.

When I was in a panicky state about my health, my beta-blocker stopped working for a week. Just as soon as the cardiologist ordered an event monitor, it magically started working again. Coincidence? I think not; I think I felt reassured by the event monitor and that it calmed me down enough for my heart not to race. Give it a few days and see what happens; if it persists, then call your doctor. Also, what is your heart rate without the beta blocker? Chances are it would be a lot higher, so any reduction is probably good.

Thanks, Nina. Yep, I don't think "blow" quite made sense! Amy

Karen - I have not been on steroids before, but from what I've heard, I feel like I have. My doctor told me he doesn't think it's adrenal insufficiency because my blood pressure is not low (actually, it's slightly high), and he thinks it can't be Cushing's because I would gain, not lose weight. I did see a neurologist and he did a nerve/EMG test and it was perfect. He is considering an MRI for no good reason other than to see what he can find, but I am hesitant to expose myself to more radiation. I just read that every time you have an x-ray or CT scan, your risk of cancer later in life increases a lot more. If I continue to waste away, though, I guess I won't have much choice. Jessica, thanks for the reassurance. I am sad, though, to hear you have suffered the same horrible symptoms. It is terrifying to see your muscles disappear even when you exercise and eat well. Yes, I am doing both, and drinking plenty of H20. It's so strange - I had to pour a glass of wine tonight from a bottle with one hand and couldn't lift it because my wrist/arm muscles were too weak. What in the heck causes the muscle atrophy? And what causes all the lymph nodes to fill? I have hundreds of them all over my chest, stomach, underarms, even my legs - I didn't even know they were there until they all filled up a couple months ago.

I am literally feeling like every single system in my body is failing right now, and I -- and my team of four doctors now -- hasn't even a clue as to what's going on. In addition to developing typical POTS symptoms over the course of a week or so in December, I have also developed severe weakness/muscle loss, have had significant weight loss (as in I lost all of my pregnancy weight in four months plus six more pounds, and I was on the thin side to begin with), am now having lymph node swelling all over my body, swelling, constant sweating, and a horrible dry mouth that will not quit. I am becoming more concerned about the loss of muscle and weight loss than the POTS. I feel like I'm wasting away, and I am so scared. One of my doctors has even suggested that this is all some sort of postpartum conversion disorder and that I'm harboring a fear of being a mother. I know anxiety and depression can be physical, and the mind is pretty powerful, but what do you guys think? I literally have no abnormalities in my bloodwork or ECGs. I even had a nerve & muscle function test that was normal. I don't know where to turn. I even am trying counseling, even though I seriously doubt that swelling and muscle loss can be psychological. Can this really be happening? I feel like I'm dying a slow death and I have no idea how to stop it. The only thing I'm waiting to be tested for is lupus, and that's happening on Monday. I just don't feel all this weakness and weight loss could be POTS or depression/anxiety alone. Can it? Also, I tried Zoloft for a month in January and it did nothing. Clonazepam provides very little relief. Amy

I don't know about interrupting fainting, but it's been said that coughing can stop abnormal heart rhythms (i.e., the Valsalva maneuver is similar to the idea of coughing; plug your nose, close your mouth and blow).

Thanks, Michelle and Nina -- very useful! Amy

My neurologist is sending me to a rheumatologist (I think I've been to just about every kind of specialist imaginable) to make sure I don't have lupus. He is concerned because I lost my pregnancy weight in two months, then went on to lose another 8 pounds beyond my pre-pregnancy weight. I haven't been this light since middle school. He suggested that lupus can cause some weird symptoms that can look a little like POTS; he is especially concerned about the weight loss and the diffuse weakness and swelling I complain of. I thought I just had blood pooling in my legs, but I am now starting to think it's swelling, because it moves to my hands when I lie down. POTS sure is looking like a better illness to me than lupus at this point -- I never thought I'd say this, but I would be relieved if this was just POTS. Do any of you guys know anything about lupus, whether it could manifest itself in a POTS-like way, or whether POTS can occur with it? I have had some arthritis-like thing going on in my right hand the last couple years, but I figured it was from doing massage therapy and typing a lot, because I do a lot of computer work.