calypso

Congratulations! I remember your name from at least four or five years back and knew you had wanted to have a baby. The shortness of breath is exactly how my POTS began several days after I had my first child. I didn't have the chest pressure so much; maybe a little. But I felt like I could barely breathe, and every test would come back normal. I would ask for an echocardiogram if you have not had one yet. I still am short of breath and have no idea how this relates to POTS for me and not for most of the others on this forum. Amy

I take Klonopin and atenolol (up till 2 weeks ago, it was Toprol XL, but there's a drug shortage of that). I have not had problems. I would guess he is concerned because of your apnea -- maybe he thinks your nighttime heart rate may drop too low? Amy

Usually, when people are just starting to become ill, blood pressure rises an average of 5 units higher both systolic and diastolic, and maybe that's what's making you feel better. After a couple days, your body is filled with inflammation, and your heart has to work harder to circulate blood through vessels that also become somewhat inflamed when you are ill. Plus, your organs and cells are working extra hard to rid your body of the virus, so that would make sense that heart rate would go up. For me, I get a higher heart rate at the onset of illness, and it stays until I am better. I always, always feel worse when sick post-POTS than I ever did pre-POTS. Amy

So glad to hear you made it through and that you and your baby are OK! I had preeclampsia too, but that was before I developed POTS, then I developed POTS within days of that. Take care of yourself -- hopefully your husband took some time off or you have family nearby to help. Resting the first few weeks is very important. Amy

I, too, was doing well on Toprol XL 25 mg/day. Darn the shortage! It sounds like it isn't going to be around anytime soon. When the cardiologist's office called me to tell me they would switch me to atenolol, I wasn't thrilled because I have been semi-stable the last several years. And since I have been atenolol the last two weeks, I have not been happy. I have more tachycardia, headaches, nausea, fatigue and a general yucky feeling. I sure hope I don't gain weight. Did you not gain the weight with Toprol but you did with atenolol? I was also offered carvedilol, which is a mixed beta-adrenergic antagonist, so it's in a slightly different class of beta blockers than Toprol and atenolol (which are beta-1-selective). The way I understand this all is that these drugs block different cells' action, therefore reducing hormone secretion, etc. Here's basic info from Wikipedia, which is a semi-reliable source: http://en.wikipedia.org/wiki/Beta_blocker#...elective_agents Anyway, I don't know what to do either. I may try carvedilol, but since it's in a completely different class of drugs, I am hesitant. Have you ever tried to go without the drug completely?

I was diagnosed with anxiety/panic disorder when I was 18. I did not develop POTS until I was nearly 27. I am sure that my body's genetic makeup is such that I am predisposed to both. I consider it a great accomplishment that I have not been in an ER, ambulance or urgent care clinic in the last four years, and it's mainly because I have learned to talk myself out of freaking out every time I get a POTS attack or symptom. I do take clonazepam on occasion to calm down. I do not consider myself dependent on it. However, it's nice to know it works a bit when I need it. I hate that my body responds to situations before I even have time to think about what's happening. My heart rate will skyrocket and my heart will start pounding; I'll turn hot and red; and I will get all clammy/sweaty every time I perceive some sort of threat, or bad news. Sometimes it's when I am opening an envelope with a blood test result, or when one of my kids gets hurt or is sick, or when I am having a POTS attack. I have been reading a lot on this topic and have found a few books lately that focus on retraining your brain to respond differently to "bad" situations. "Train Your Brain, Change Your Mind" by Sharon Begley is one; another is "Blink" by Malcolm Gladwell (which is more about how the brain works to make snap judgments on a subconscious level). Anyway, the answer is yes, I have anxiety, too, and it's hard to separate from the POTS. But I know I have it because it was there first.

I have the Mirena IUD and so far, so good. I think it does make me feel a bit bloated and carry a couple extra pounds in my stomach, but that could be me getting older, too. I have almost no periods and only very occasionally do I get PMS-like symptoms.

I saw a naturopath who said I had adrenal "exhaustion." I took Standard Process's Drenamin supplement, which was basically cow adrenal glands all ground up in pill form. It smelled awful and did nothing for me. However, my mother-in-law takes it because she suddenly had high blood pressure, and she no longer has the high blood pressure. So I don't know, but thought I'd share that. It's a common "diagnosis" in the naturopathic and Chinese medicine fields. The question is, why are the adrenals exhausted? It doesn't get to the root of the problem.

Hi everyone, I went to pick up my Rx refill of Toprol XL 25 mg, which I have been taking since my POTS began, and apparently there is a worldwide shortage of this drug. So my cardiologist called in atenolol 12.5 mg. I am wondering if anyone here has had their Rx replaced with atenolol and if so, did it seem to work the same? I am supposed to start taking it tomorrow.

I have noticed that I go to bed feeling really cold, but in the morning, I now wake up all hot -- not sweating, but just really warm. I never used to be this way; it just started in the last few months. I seem to have trouble regulating my temperature and will be cold when I shouldn't and hot when I should be cold.

Hi everyone new and those of you I recognize! I haven't been on for quite some time. I have been doing fairly well for the last couple years after having my second daughter in April '07. However, I seem to get worse the further I get away from pregnancy; I wish I could stay pregnant forever but not have any more children -- or labor pains! My kids are doing great, too. On Monday of this week, I went into the doctor for a physical. My tetanus expired, and I was told I needed a booster. I got it and later that night developed flu-like symptoms, along with a major worsening of my usual POTS symptoms (shortness of breath, tachycardia, dizziness, exhaustion, dry mouth). I got the chills for about a day, then just the POTS symptoms have remained. This makes me remember that I got a rubella vaccine a few hours before I developed POTS the first time. I am starting to wonder about vaccines as my trigger, and not my first pregnancy, as I first thought. Or maybe vaccines just exacerbate the condition. Just wanted to share, in case anyone's thinking of getting a vaccine anytime soon. I do fine with flu shots; go figure. I would like to hear if anyone reacts poorly to vaccines since their diagnosis. Happy holidays to everyone here! Amy

Hi Erika, I went off my meds for my second pregnancy (and didn't have POTS until after the first one). I was told a beta blocker would be OK in small doses (25 mg or less per day for metoprolol). However, I had a feeling I would do better with my heart rate and symptoms during the pregnancy, and I did do better, so I managed to survive without them. Sorry to hear about the GD diagnosis. I don't know if there's a connection, Katherine. GD is getting to be fairly common (I think the figure is about 5 percent or so of pregnancies, but I would suspect it's higher b/c some women don't get prenatal care). Not to freak you out, but I would be on the lookout for preeclampsia, because it seems to have happened to many here on the POTS site, and GD can increase the risk of preeclampsia as well. High blood pressure readings, unusual swelling of hands or face, sudden weight gain, headaches and a general not-well feeling are common symptoms. Good luck to you. Amy

I have no idea what the future will hold for you, but I found that I at least felt emotionally better when I hit the acceptance phase (following a couple years of anger, grief and denial). I am still somewhat impaired but do most of the things healthy people do (exercise, work, have children, etc.). I might feel normal again someday, but I am not going to hold my breath. Try to focus on the positives of your current condition, and hope for better.

Hi Katherine! I haven't be on for a while but thought I'd stop in, and this post caught my eye. I can't believe that POTS patients are recommended to have a C-section. Blood loss and blood volume changes are horrible enough after a vaginal delivery. I would rather have the tachy episodes 10 times than have a C. I went through my second labor with POTS with absolutely no problems. Of course, the next day, like clockwork, the tachycardia returned, even though it had been absent since being about five months pregnant. The postpartum period is always the worst for me, and as you know, when the whole problem began when I was pregnant the first time. Thanks for sharing. Amy

Could be part of the hyperadrenergic POTS or could be the initial first year of a new illness. It took me about 18 months from diagnosis for my anxiety to tone down, and it still isn't great. I think you really have to nip the negative thoughts in the bud unless you want to establish a pattern for your autonomic system. The more you think negatively, your body remembers, and will start to react that way every time a new symptom emerges, every time you get sick, etc. Start thinking the opposite and distracting yourself, and see what happens. Amy

Hollie, I hear you -- I have two daughters (1 and 4) who often want me to lift them, carry them, help them, etc., and usually I am wiped. However, I have found two things in general help: Exercise (without kids). I started a weight training program about six months ago that has really, really helped me get stronger, and it's actually boosted my endurance for trips to the park and lifting the kids. I also have less fatigue in general. The other thing that helps is connecting with the kids. I think when I spend more time with them, they aren't so demanding for me to help them at the playground, and they seem to sense when I'm having a rough day. I am sure you already spend a ton of time with them, but even having a conversation with them (something like "Mommy's feeling very tired today. Do you remember when you felt tired on XX day and needed to rest?" etc., etc.) may help. I would not do this very often, though, as they will get desensitized to it and not take you seriously when you need them to. Good luck! Eventually, another day will begin and hopefully will be better. Amy

My heart rate dropped into the 30s once while I was asleep and wearing a holter monitor (the 24-hour kind that your doctor orders). You could ask for this test to make sure it's not getting too low, because it will be the lowest when you are sleeping. My doc said it was fine for a healthy heart to have a rate this low while sleeping. Amy

I have all-over muscle weakness, and when I am very tired -- like during periods of stress -- I often lose my voice. I think that for me, it's the last muscle to go and it tells me to slow way, way down! It usually will happen once or twice a year for a few days at a time. Amy

I have not had a problem w/ ibuprofen. I would check to make sure the brand you are taking is made in the USA or somewhere reputable. Although even the US drugs aren't safe these days since we have no FDA inspection! Amy

Hi to everyone I haven't talked to in a while! Been busy with the two girls (who are now 1 and 4) and mostly getting by OK. Lately, though, I have been having nerve-like pain in one of my fingers and in one of my feet. It's mostly on the top of my foot and toward the outer side. It comes mostly in the middle of the night but is like a burning pain. The finger pain is a throbbing pain that comes anytime I have my hands under water that is cold. I used to get the throbbing pain when washing my hands in cold water during winter, and I thought maybe it was a little Raynaud's. But now that it's only in one finger and the foot pain is going on, I'm confused. Anyone else have crazy pain like this with no known cause? I am probably going to give it another week before getting it checked out because we've had a huge run of health care expenses with my 1-year-old, who is being checked for kidney reflux after two UTIs recently. Thanks! Amy

I was only on very low doses of Toprol XL and clonazepam, so I weaned off. I felt much better while pregnant and wish I could be in that hormonal state at all times! I had more energy, slept better, felt stronger, finally gained some weight and my heart rate was much lower. Within a couple months of delivery, I again felt like garbage and am getting increasingly worse again. Feel free to PM me if you want more info. Amy

Interesting ... I have had both high D-dimer and low K too. Never was found to be anything significant. Amy

My first pregnancy was my POTS trigger. I developed it within days of delivery. It got very bad for the first year postpartum, then got a bit better. I felt much better during my second pregnancy -- I finally had energy again, the highest my heart rate got was in the 90s WITHOUT meds, I gained some weight and muscle, etc. Now that I am nine months postpartum I'm almost back to where I was after the first. I think the hormones definitely are a major part of my POTS. Amy

I have pregnancy-induced POTS. Mine came on with first pregnancy which was also complicated by pregnancy-induced hypertension. I can say my life hasn't been the same since. E-mail me if you want to talk or have specific questions. Also, I did manage to get pregnant again and have another child successfully 9 months ago, and am basically now back to where I was after child no. 1. So there is hope if you decide to have another child. Amy

Sorry I didn't see this until now! You guys are so sweet. My husband and I went out to dinner and left the kids with our sitter for two whole hours! My 9-month-old is in her clingy stage, so she managed to make it without crying for most of that time. Amy