calypso

Lalalisa, I got POTS a few days after I gave birth to my daughter, so I don't know exactly what's in store for you. But I do know that some get better, some get worse, some stay the same. I haven't heard of anything horrible happening so that's a good thing. If having children is something you really want, I would be followed by a high-risk OB just to be safe and get clearance from a cardiologist before getting pregnant. Good luck, Amy

I just e-mailed you, Jessica, FYI. Amy

1. Amy 2. 28 3. Dx: "Probably" POTS (no tilt table test because my poor man's tilt showed a heart rate increase of 40 beats a minute but no BP change; my neurologist believes they don't tell you much unless BP is bottoming out); plus I have pre-existing panic disorder 4. Dx this year at age 28 but symptoms started late last year at age 27, three days following the birth of my first child, Delaney 5. Near Madison, Wisconsin, but grew up in Youngstown, OH 6. At my worst: Heart rate of at least 115-140 on standing, shortness of breath, severe weakness, swelling/blood pooling in legs, anxiety (feels like I'm being chased by a tiger and can't run because I am too tired), chest pain, high and normal BP, rapid and excessive weight loss, fatigue/exhaustion, exercise intolerance, brain fog/mild cognitive dysfunction, strange aching in feet that accompanies a nervous nauseous feeling -- like right before you walk into the dentist's office and know you're about to be drilled. 7. I haven't found a successful treatment yet except for the tachycardia, which is kept at bay with beta blocker. All of the other symptoms are, on a good day, still there but my energy level is occasionally better on some days so that I can exercise. 8. I've tried a beta blocker (metoprolol), Zoloft, clonazepam and Lexapro. Zoloft did nothing. Clonazepam helps the anxiety but nothing else. 9. Metoprolol keeps heart rate lower but not normal always. I thought Lexapro was working -- I just started it two weeks ago -- but now I'm not so sure. The book's still out on this one. Relaxation, exercise, massage therapy, meditation and funny movies are all that help. And my daughter's bright eyes and smile!

I am no expert on POTS, but I have never heard of anorexia being related to POTS. I think that by now there are enough people with POTS who have a pre-existing health problem that it's not unlikely to have more than one thing in your medical history -- i.e., anxiety disorder, epilepsy, MS, etc. The same thing happens with anxiety -- for instance, if you have that in your history, people (and doctors sometimes) think EVERYTHING you subsequently develop is related to anxiety or is another symptom of anxiety. As if people with anxiety never develop other health problems. OK, enough of my ranting ... but I would not worry about your history of anorexia. I do hope that you have it resolved because personally I am losing a lot of weight with POTS, and if you are, that could be detrimental if you're not eating. Amy

Thanks for all of your advice! I just am afraid that if I keep breastfeeding, there won't be much of me left. I really am down to nothing -- all of my veins are bulging out, my wristwatch now fits about halfway up my arm, etc. The weirdest thing is that throughout the day, I retain a ton of water -- my legs swell, and I gain five pounds before the day's end, only to lose it all by the next morning. I have no idea where it goes. I guess this is what makes me think that I have mild heart failure or something, but then again, I have had an echocardiogram and the heart doc says it was fine. I also don't get short of breath when I lie down, and apparently that is the hallmark sign of heart failure. It is so strange that POTS patients often DON'T retain water and that that's what the salt/fluids are for. But I am already retaining water, so this would not help me. Plus I have slightly higher BP, not low. Jessica: I am eating about 3,000 calories a day and have been for at least the last few months, but maybe it's still not enough. Try eating 3,000 calories on a low-fat diet -- not easy!! I am trying my best to get through this without stopping breastfeeding. I started taking Lexapro a couple weeks ago and am praying it starts to somehow make me fatten up a little. My doctors call me "an enigma" and tell me they have never seen a woman have a baby and have anything like this happen. But don't worry, they say -- if it were something really bad, you'd have taken a turn for the worse by now. That still isn't very reassuring. Thanks again for your comments. Amy

I just cannot stop losing weight and especially losing muscle mass since POTS started. I am really at a loss as to what I should do. I am still breastfeeding my daughter and wanted to continue until she is 1 year old, but she is now 7 months and I feel like I may have to stop. I know most of you aren't breastfeeding and dealing with POTS at the same time, but does anyone agree that breastfeeding, on top of having POTS, could cause this much weight loss? I feel like something is being missed in my case. I have been so short of breath since I had my daughter, and yes, I definitely have POTS symptoms, but so few of you seem to be short of breath AND losing tons of weight/muscle. I swear I have lost about a third of my muscle mass and I now weigh what I did in sixth grade (110, down from my prepregnancy weight of 122). Why do I keep doubting the POTS diagnosis? Am I being irrational? Amy

Deb, Have you had an MRI of your brain? If you are falling down, I think you would need that. Chiari malformation comes to mind, because it can cause POTS symptoms AND ataxia. I wish you the best and understand how difficult it can be to maintain patience when trying to find the correct diagnosis. I am going through the same thing, with my doctors "pretty sure" it's just POTS but not sounding very confident that that's all that is going on. Amy

I've been using these instead of weights on the days I can't lift the weights. They allow me to work as hard or as easy as I want, which is nice. There are all kinds of exercises you can do with them. I bought mine at Target for seven or eight bucks. Amy

Danelle, Are you taking anything or talking to anyone (i.e., therapist) about your panic issues? I am more worried about you having panic attacks/anxiety than about you taking a new med. I have had panic disorder since age 18 and it was completely controlled with meds/therapy about six months after diagnosis, but then when I got POTS it came back. I think you shouldn't treat these episodes as part of POTS, but rather as a separate thing. Maybe once you get the anxiety under control, you will at least start to mentally feel better. Please don't take this advice the wrong way. I just picture you sitting there looking things up like side effects of meds and worrying yourself to death. And keep things in perspective; I have been told SVT is a benign condition in the vast majority of cases. You have had more EKGs than most people ever will have in a lifetime. The younger people who have cardiac arrythmias and such often don't even know anything is wrong, and in many cases if they would have had an EKG it could have been prevented. You have had these tests, so you are probably at a much lesser risk. If Dr. Grubb was worried that you would have an adverse reaction, he would have warned you or not prescribed the medication. Don't forget that doctors have liability to worry about. I am not usually in favor of taking more meds, but if your anxiety isn't under control without them, that's doing your body probably more harm than any meds you take. Take care, Amy

Oh Danelle, I am so sorry you are going through this. I have never had SVT -- at least not documented. I just get sinus tachy, but it's been as high as 145. I was told by my cardiologist anything over 150 is usually SVT or AFib unless you're exercising. I think the EP study may be hard, but you have to realize you are young (I can't remember how old you are but don't think you're over 45, right?). You need to go on with your life, and the only way to do that is to get the best handle on your health, which means proper diagnosis. If the EP study is the only way to do it, so be it. You will be in the safest place should something go wrong. And that's a small chance -- I think it's less than 4 percent or something. Good luck, Amy

I definitely am a clotter. Although I have never had a major blood clot, I did have two small ones in my placenta when I had my daughter. I was tested for clotting disorders and was found to have a genetic mutation that is present in 1 in 50 people, mostly of European descent. So maybe any abnormalities of blood clotting (too much or too little) is a problem with POTS, or maybe just coincidental since these are fairly common problems in the general population.

I just started Lexapro a couple of days ago after a long appointment with my neurologist, and I can't believe I am already feeling a difference! I woke up today for the first time since the POTS started and my heart was not racing nearly as much as usual. I feel a little less nervous in general -- it seems to be controlling the hyperadrenergic symptoms a bit. I am still incredibly weak, but I don't expect that to go away so fast, obviously. I did lose a lot of weight/muscle, so that will take time to put back on. I haven't been following my BP but am hoping this medication doesn't make it any higher and maybe somehow will bring it back to my normal range by balancing my hormones. I feel kind of strange, though, because I feel like my POTS must be mental in some respect. Otherwise how could an antidepressant help? I don't quite understand the drug's mechanisms. I just hope that I won't need it forever. I feel like although these drugs aren't addictive, since I have taken them (I took Zoloft for seven years up until last year) my body is not able to function as well as it has without them. Kind of like it's become dependent on the hormone balancing. But I am so happy that something is working. Thank goodness for modern medicine! Amy

I am so, so sorry. My boss just lost her granddaughter, who was born at 25 weeks, two weeks after her birth. Our workplace has begun a collection for the March of Dimes to research preterm labor. Maybe this is something that Stephanie's friends would consider. You are a very good friend for all of your support to her.

I've got the vein thing too since POTS started. My veins are bulging out everywhere and are bright blue and green all over -- I can see veins all over my neck, chest, even legs and stomach, where I never used to see them. But I think I also can see them more because I've lost a lot of weight and muscle, so there's less fat/muscle to hide them. Have you lost weight lately? I don't have EDS. I think it's just plain old POTS. Amy

I don't get a drop in BP always when I have shortness of breath, so I am guessing it's just a result of dysautonomia with unknown cause. The autonomic nervous system controls respiration and heart rate, so if it can mess with your heart rate, I assume it can also mess with your breathing.

Jessica, My husband is extremely supportive but at the same time is very frustrated. He has told me he feels as though there is nothing he can do for me. Listening to me complain irritates him greatly, so I try not to do that, but at the same time he feels pretty bad for me. But despite all of that, you're right -- he doesn't get it. Maybe he is just optimistic that I will get better, so that's why he says things like "when you get better we'll do this or that." I too think I will get somewhat better at some point, but the fact that I am able -- barely -- to hold down two part-time jobs, raise an infant and be sick all at the same time is probably as challenging as I can let things get. My husband also thinks this is an anxiety-type illness -- he even told me at one point he thought I made myself lose muscle mass and weight because I worried about my illness. That hurt. No rational mind could make you worry yourself to death. I really am starting to think my husband needs to see a counselor or talk to a friend about this situation. Of course, he isn't that kind of guy; he feels you just need to deal with things on your own. Maybe David would benefit from counseling. Maybe you could write him a letter. I know that I write better than I talk. Tell him what you deal with on a daily basis. (I told my husband I feel like I'm in the movie "Groundhog Day," and every day I stand up, my heart races, I take my beta blocker, I get dizzy, I can't breathe, etc., etc.; the only difference is sometimes the day ends a little differently.) I wish I had better advice for you. I think you will get better over time, especially because you're young and developed POTS w/ a pregnancy. Stay positive! Amy

I was reading up about dysautonomia and came across this article: http://www.healthfinder.gov/news/newsstory...sp?docID=514906 I know that according to the POTSplace site, POTS isn't supposed to be life-threatening or life-shortening, but this article says otherwise. I'm a little freaked out, to say the least. Any thoughts?

I have the same exact problem that started with POTS. In fact I noticed this before I noticed my heart racing. Mine happens all the time, even when sitting, and improves slightly when I lie down. I also get short of breath more easily when I exercise or climb stairs, or even when talking. It's horrible and makes me nervous. I empathize!

I don't have light sensitivity but do have noise sensitivity. For the first three months of POTS I could not stand to hear my daughter cry or I would go crazy from it. I have days where I feel like I am drunk but haven't been drinking. It lasts for a few hours then goes away after lying down. Sometimes I wonder if I should just have a few drinks, then at least I would have good reason to feel this way!

Deb, As I told you a week or so ago, I also have high BP more often than not. But then for a few days after that it was actually low, and dropping even more when I stood up. I have decided (and I base this on my own personal theory; I have no medical degrees and am just a massage therapist) that POTS must damage the sensors in our nervous system that judge when to raise/lower BP and heart rate. In the vast majority it seems just the heart rate gets affected, and if the BP is affected, it is lowered, not raised. But then there seems to be a select group of us who have the higher BP. Mine, if I were to come off of my beta blocker, would probably be 130s/80s -- which is not technically hypertension, but it's darn close. And for someone like me who always has had 90-100/50-60s BP, that's a huge difference. I also don't think someone with higher BP should take Florinef or Midodrine. Those meds are geared toward people whose BP drops very low upon standing. Sounds like yours doesn't. But why they helped for a few weeks is beyond me. I assume the ACE inhibitor is not causing the weakness/inability to stand? I don't know much about that class of drugs but doubt it would. Are these good/bad times coinciding with your menstrual cycle at all? I think hormones are heavily involved. When I cut back on breastfeeding a little, my BP went down a bit, even though breastfeeding is supposed to actually lower BP (in normal people, and I am not one of those anymore!). I don't know what could be causing the POTS or what else it could be. I think we each have a cause to our POTS that we may or may not find. My bet is that the hypertensive POTS people must have some damage to the baroreflexes (which maintain BP) or must have some strange hormone fluctuations. My BP seems to be all over the map; I take it one minute and it's 110/70, then a few minutes later it will be 90/78. I have been trying to figure out the pattern and there just doesn't seem to be one. I have an appointment with my neurologist on Tuesday and will ask him about the BP issue -- and what could be causing it. I also think that somehow POTS is partly mental -- it seems that when I do a deep relaxation technique, my BP goes down (a lot). But then my heart rate is still high, but not quite as high, when I stand. And I have a history of panic attacks, so I know my nervous system is already sensitive. I think it's beyond our level of scientific understanding! Amy

Merrill - To answer your questions, I was not doing anything particularly specific - just standing in the kitchen and holding my daughter. Came out of absolute nowhere ... but I know that's how panic attacks usually hit me. I am supposed to be starting Effexor soon but have been putting it off due to the fact that there's little research on what it does to babies whose mothers take it while nursing, and also because I really don't want to be on an antidepressant again ... I just finally stopped taking the one I had been on for eight years last year. I feel very defeated that I can't get control over all of this stuff without the drugs. I have been through five psychotherapy sessions in the last two months and despite tons of relaxation techniques, positive thinking and such, I am getting nowhere. Having developed POTS at the same time is not helping and is no surprise considering how sensitive my nervous system already was. The fact that this one only lasted two minutes makes me feel as though I can endure another, and makes me think it was probably a panic attack and not something else. At least that's what I hope!

Michigan Jan, I had the exact same thing happen to me with MVP. Three different doctors hear a click in my heart, but echo does not show it. It did show "mild mitral regurgitation," which I thought was the same thing as prolapse, but it's apparently not. I also took antibiotics for eight years before the diagnosis was overturned. Then I see the other day on TV that taking too many antibiotics can cause breast cancer. Great.

I have suffered from panic attacks for nearly 10 years, and they have been fairly mild, totally controlled with medication (Zoloft and Klonopin). I went off of those when I got pregnant and did fine. Since I had my daughter, I have had two panic attacks -- again, not a big deal. Today, however, was a different story. I was standing in the kitchen holding my daughter when my entire head/face become fiery hot and red, feeling like my head was about to burst to bits. Then I started gasping for air as my throat closed and I nearly started choking. Of course by this time my heart had started pounding madly and then my face went numb. I picked up the phone, nearly dialed 911 but decided to go outside instead. My husband was out of town so I was afraid if I passed out or something, my daughter would be crawling around on the floor by herself, or she could get hurt if I collapsed. Two minutes later, it stopped, and I felt like I had run a long race. I have never had a choking/shortness of breath sensation before with a panic attack; mine were always heart pounding and maybe a little tingling of my head. But oh my gosh, now I know why some people develop a fear of more attacks. I know some people here get panic attacks. Did you guys have them before POTS or did they come on after? I don't know why this one was totally different from the rest and so severe, but wow.

I am learning more and more that you just never know what you're going to get when it comes to pregnancy. Tell your friends we're all sending positive energy their way and are hoping their little one will pull through. Amy

I do not take Proamitine but I did have significant hair loss a couple months back (which is when my pots was at its absolute worst). I had just had a baby and I know it's common to lose some hair postpartum, but I lost tons, plus the hair on the backs of my hands and my legs disappeared. I have no idea what causes it. I would think it has something to do with cortisol or hormones; I read somewhere recently that increased levels of cortisol (which our bodies release when we are under stress, including an illness like pots) cause hair loss.