calypso

Did you say you just started having POTS symptoms in November? I did too. But be patient! The one thing I haven't heard of is a super-fast recovery. My doctors have told me it can take as little as 9 months to as long as 5 years to recover. And the 60-80% figure is actually the number of people who have "improved" -- which means either these people have gotten used to coping with POTS or the medications are working, not because it just up and went away one day. I don't mean to sound negative or imply that your POTS won't go away, but I don't think it's as fast of a process as you might expect. I think there are many issues going on in the body to trigger and sustain POTS, so each of those factors has to change before it will go away. That's why it's important to try to find the cause, which I am in the process of doing myself. I also agree that something autoimmune is going on with POTS, but we just have to be patient and see what research brings. 10 years is not that long to learn about an illness like this. So hang in there and try to do some things to take your mind off being ill. I just rented the whole first season of "Curb Your Enthusiasm." I laughed my butt off. Everyone with a chronic illness should laugh more; it helps to relieve the stress. Amy

Hi Shanna, Welcome! Please tell a little about yourself and your POTS, what has helped you, etc. I am pretty new to this board -- I developed POTS five months ago, although it seems every few days there's been a new person diagnosed. Amy

I took 25 mg of Zoloft for several years, then 12.5 mg. I was told was probably a placebo effect at that point, but it still seemed to do something ... because when I stopped taking it, I had a slight withdrawal effect. So 25 mg is probably the lowest therapeutic dose.

I can't answer each of your individual questions, but I am learning that POTS does some weird stuff to the body that can't be explained. For instance, I sometimes feel that I am living with someone else's hands attached to my arms -- I have trouble with fine motor skills sometimes. I was trying to pick up a bunch of change off the table the other day and it took about 10 minutes (should've taken about 10 seconds). I also seem to have severe constant weakness, which most other people with POTS don't have, and a chronic shortness of breath. Although it's entirely possible I have something else going on and it hasn't yet been picked up, I think there are a lot of things that happen to the body that can't be explained because we are all so different in terms of genetics & environment. So maybe your unique things are BP swings, blue toenails and such. I'm sure they're related ... how can they not be? Once one thing, like heart rate, falls out of line, everything else has to compensate somehow -- blood pressure, vein constriction, etc. I'd not worry too much about what is causing what as much as trying to get yourself back in balance as a whole. A good diet, regular exercise (force yourself, even if you feel like you're dying. I promise you'll feel better), breathing exercises/meditation, beta blockers (usually low dose), and maybe anxiety meds if you need them. The more you stress, the worse it gets. The bottom line is even if we are dying (and I bet we're not), what the heck can we do about it? Cardiologists can't implant a defibrillator in all of us. Take care, Amy

I get that "revved up" feeling for no reason since having POTS. I would guess it has something to do with an inappropriate release of hormones (adrenaline, maybe?) or a release of too much. I really feel that meditation helps to control it. I just finished reading "Full Catastrophe Living" by Jon Kabat-Zinn, the guru of relaxation, and it gives very clear instructions on how to quiet down the autonomic nervous system. I believe it helps me more than beta blockers. The more I think about having POTS, the more hyperadrenergic I get. So I'm trying not to read too much on this board because I don't want to get obsessed with my health again. Good luck, Amy

Primary care docs often haven't heard of POTS because it's really only been recognized in the last 10 years or so. Maybe younger doctors would be a better option (although my sister is one, she's early 30s and she hadn't heard of it either). But the key is not that they are an expert in it, but that they're willing to learn and work with a specialist to keep you functioning as best you can. Make sure you continue to see a specialist and ask him/her to recommend a good internist or family doctor. Or print out info from this Web site and give it to the family doctor. That's what I did, upon recommendation from my neurologist.

I haven't been checked for asthma b/c all of my docs feel it is related to my POTS symptoms. But I'm starting to wonder. I've never had good exercise tolerance (get short of breath easily). Can asthma get worse or show up following pregnancy?

Do any of you have a chronic inability to breathe normally all the time? I can't figure out if my chest muscles are super-tight, if I'm also developing asthma, if this is POTS or what, but I am going crazy trying to breathe. It just seems like I can't take a deep breath, and at the same time like I've forgotten how to breathe. Neurologist thinks it's not a common POTS symptom because it doesn't resolve with sitting. And it's weird because I have it when my heart is behaving normally. Are pulmonary function tests helpful? I have already had my breathing muscles tested for weakness and they're fine. I've had all the logical heart tests (echocardiogram, EKG, event monitor, chest x-ray, even a CT scan of chest). All clear. Help!

Hi Julie, I would emphasize how POTS (or your potential POTS symptoms) are interfering with your daily life. I think most doctors have a goal of getting you as functional as possible, and if you say, for instance, "I can't climb a flight of stairs without feeling like I'm about to collapse," that comes through more clearly than "I'm tired and weak." Just be specific, and limit your questions to your top three concerns. I have noticed that the more symptoms I mention, the more the docs tend to think you're a bit of a whiner. Good luck. Amy

My neurologist tells me although it's not a definitive test, that there is an antibody that often is present in POTS patients. He's thinking about doing the test to decide if I for sure have POTS. Anybody know about this antibody or what it means?

I am a copy editor at a daily newspaper part time, and I also am a massage therapist part time. I spent a whole two years learning all about how to be destressed and healthy, etc., and six months after I started practicing I got POTS. So much for Dr. Andrew Weil & co.

I had also stumbled upon this site a couple months ago ... I agree and think that stress, either from illness or life, triggers nearly all illnesses like POTS, CFS, etc. One thing falls out of balance and the rest follows; then your body tries like crazy to keep compensating for things. So far, the one true thing that helps my POTS is exercise every day, eating well, sleeping well and relaxation/meditation.

I got a copy of my Holter monitor results recently and the cardiologist noted that my heart rate dropped to 42 at its lowest during the night. He said this is "perfectly normal in a healthy young adult." To me, it sounds really low. Do any of you guys know your lowest heart rate? I think the slow rate may be a result of the beta blocker I'm taking. And maybe that explains why I'm so out of whack in the early morning.

This info is from the Texas Heart Institute Web page: Beta-blockers "block" the effects of adrenaline on your body's beta receptors. This slows the nerve impulses that travel through the heart. As a result, your heart does not have to work as hard because it needs less blood and oxygen. Beta-blockers also block the impulses that can cause an arrhythmia. Your body has 2 main beta receptors: beta 1 and beta 2. Some beta-blockers are selective, which means that they block beta 1 receptors more than they block beta 2 receptors. Beta 1 receptors are responsible for heart rate and the strength of your heartbeat. Nonselective beta-blockers block both beta 1 and beta 2 receptors. Beta 2 receptors are responsible for the function of your smooth muscles (muscles that control body functions but that you do not have control over). Toprol is a beta-1 receptor, I think. So theoretically, your heart shouldn't be pounding ... but mine does too sometimes, and I'm on metoprolol (generic Toprol).

103/73 is a very normal BP. 90/60 is the mark at which anything below is considered low BP. What was your BP before you started Toprol? If you're taking 100 mg (which is a hefty dose -- is that extended release or something?), your BP may even have been a little high before. I have gone from 130/80 to 110/72 with just a 25 mg dose of Toprol 2x/day.

I see tiny flashes of light when I'm just walking or sitting around. I pay less attention to them than I do the chest pain and shortness of breath, but I definitely get them. I have no idea what causes them, but low BP and glucose levels would be my guess.

I have been having pretty much constant chest pain for the last three weeks that sure seems like heart pain. Of course, when I went to my cardiologist (who was off that week and I had to see a younger, not-so-nice guy), they ran an EKG and told me I was too young (I'm 28) for heart-related pain. I asked if the POTS could be causing the pain and this guy said no, although he only has two patients with POTS, so what does he know? So I'm wondering what you guys think. I know some people say they get left-sided chest pain. The pain I'm getting is mainly right along my sternum, mostly to the left, and it's more of a pressure-like pain but sometimes feels like it's radiating into my left arm, neck and shoulder. My left arm then gets weak when this happens. I sometimes get palpitations with it but not usually. It's worst when I am emotionally upset, sometimes when I exercise and eat, but doesn't get worse the harder I exercise. It is completely relieved by lying down. I know you're not doctors, but you're sometimes more knowledgeable than them ... help! I am really trying to get used to this pain, but nothing seems to help it ... not Advil, not anti-anxiety meds. And I worry because I have moderately high blood pressure and a blood clotting disorder, so I'm afraid something weird could be brewing. Am I crazy for thinking something like this could happen at my age? Also, if this is a common POTS pain, is there anything that relieves it?

I got POTS just after pregnancy, so I didn't have a problem conceiving. However, my doctor told me that of the three POTS patients he has, one gets better each time she has a baby, the other gets worse, and the third stays about the same. So that ought to give you an indication of the predictability of this illness. I think if you want to have a baby, just plan to take extra time off afterward and maybe the last month before you have the baby. And arrange for extra help afterward (i.e., relatives or friends). This illness came from out of nowhere, and I didn't think I'd need help, but I did for the first two months.

Welcome. I get the same thing from my cardiologist. I sometimes think the "wait to feel better" thing makes me feel worse ... I'd rather just get an event monitor or Holter and know whether things were OK or not right off the bat. Maybe you could ask for an event monitor in the meantime and if you don't have any weird episodes of tachycardia, then you won't need another appointment. That way your doc saves the evil HMO at least the office visit cost. Usually for me, if something doesn't feel right, something isn't right. It may not be serious, but come on, this is your heart, and we only have one apiece. Don't be afraid to speak up to your cardiologist. Amy

Sorry to hear your visit didn't go better, Jackie. I love how doctors make it sound so easy in terms of finding a PCP who knows how to deal with a problem like this. My own sister is a PCP, delivers babies and sees thousands of patients every month and she had never heard of POTS -- which is supposedly common, even after pregnancy. She thought I was having recurrent panic attacks, which I used to get in my college days. So don't feel too bad about it. I'm starting to forget about finding a diagnosis beyond POTS even though I have additional symptoms that fit in more with heart disease than anything else. I'm darn close to turning to Ayurvedic or Chinese medicine, because I figure it can't hurt. By the way, from all I've read about this stuff, it sure sounds like you have chronic fatigue/POTS. Do you take anything for anxiety/depression? Please don't be offended, but I think it's a package deal when you have chronic illness. Keep your positive attitude alive as much as you can. Amy

I go to a very traditional Catholic church. I have a newborn, so no one questions you when you sit down. But even if you don't have a baby and you need to sit, I say sit. God will understand. And it's nobody's business otherwise. I've seen too many teenage girls, including myself, pass out in church on hot days and such; it's safer just to sit.

Re" the pill cutting issue: I know Toprol XL makes a 25 mg extended release pill, for those not wanting to cut the halves in half. Of course, it costs $40 more on my insurance, so likewise it may be more for you also. I've been cutting my clonazepam in half for years, though, with no problems. I suppose beta blockers should be more accurate, though.

Thanks, Merrill. For some reason I thought you were taking a low-dose beta blocker. I must have you confused with someone else here.

By the way, I didn't mean to exclude anyone else from answering this post! Feel free to take a stab.

Seems you are well-versed in dry mouth issues. I was wondering if you've been told whether the dry mouth is a POTS thing or is it a side effect of the beta-blocker. I am on 25 mg metoprolol 2x/day. I started taking it in Jan. but the dry mouth didn't really start until February but has been getting worse every day. Nighttime is the absolute worst. I am thinking of cutting my metoprolol to 12.5 mg 2x/day. I don't know if that'll be strong enough to control the heart rate, and if a reduction would even help improve the dry mouth -- because I don't know if that's even what is causing it. I know POTS is said to cause it, but is this because many people with POTS take beta-blockers? Amy