calypso

I think in the interest of saving money, the doctor tries to rationalize that people like us who get frequent arrythmias are going to have some variation in them (i.e., they may present with different symptoms, may be a little faster at times, etc.). However, I certainly don't think it's right. Of course, there's always the person who gets embarassed by the frequent complaints and then decides to not say something, and that's the one time a symptom could have alerted the doctor to something important and preventable. I always think it's better to mention the symptoms and ask for whatever test you think you need. If the doc refuses, try another. If that doctor refuses, ask for specific reasoning as to why. Then go to your health insurance if you have to. On the flip side, I do know that I have had a whole lot of variation in my heart rhythm over the years. I also have had swelling, weight loss and gain, a dry cough, all the symptoms of several neuromuscular diseases, etc., and didn't have any of the actual conditions associated with these symptoms. I was sure I'd be dead by now and am not. However, I had the right tests done to confirm I didn't have those things. Amy

Thanks everyone! I should say "discomfort" instead of pain, because it isn't really that bad, just annoying and worrisome to a worrier like myself. Thanks for all the info, Pat! I know I've had the discomfort on and off in the past, especially when my POTS gets worse. I wish I knew what the cause was, though. Amy

Do any of you get pain in your left shoulder that feels like it's referred chest pain? I have been getting pain in the front part of my shoulder, and also some at the tip toward the outside. But it seems like it is coming when my heart is misbehaving. I sometimes feel a tightness in the shoulder too. Just looking for some "me too" responses to affirm that I shouldn't be concerned. I am 31 and don't have any heart disease risk factors so I am not too worried, but I just find these subtle, unusual symptoms are often common among us here. Amy

I have always been an easy bruiser. Have you had any weight loss? This will cause your tissues to become looser and your muscle mass to possibly decrease, leading to increased likelihood of bruising. Amy

Klonopin has always been a miracle drug for me -- ended my panic attack cycle earlier in life and when I developed POTS, it toned down my autonomic system. I only wish I could be taking a bit of it right now but am breastfeeding and feel that it's too dangerous for the baby. But as soon as I stop breastfeeding I will probably resume it in small doses. I say if it helps you, don't worry about the stigma associated w/ benzos. It's just as bad to be stuck in a cycle of bad symptoms and anxiety. One could argue that anxiety is habit-forming too! Amy

Morgan - I had to wean myself off this drug before. The best way is to do it very slowly by opening up the capsules and throwing away some of the granules every day. It's not an exact science, but it works. For example, to get from 75 to 37.5, I'd open up a 75 capsule and shake out a bit of the granules every day, more and more, until it looked like there were about half in there. Then I'd switch to the 37.5 and do the same. I did not like Effexor at all. I can't remember why, but I certainly remember it make me feel even more revved up. Good luck. He can shake these on his yogurt, cereal, etc., or just cap the capsule back up and swallow. Amy

I have had good luck in the past w/ Klonopin wafers. These are very small doses. They are in a class of meds called benzodiazipines, which can be habit-forming. But panic can also be habit-forming, so I picked the drug. I am not on it right now and have found that I can go on and off of it without any trouble. Amy

Jennifer, This is my life story. If I had a good answer for preventing the panic, I wouldn't get the attacks any more. Oddly enough, sometimes I can be under an extreme amount of stress (like the last seven months, having just had a baby), and I haven't gotten any panic attacks. At other times they come on when I'm feeling like a actually have a grip on my life. Wish I had more ideas for you. I do know that the only thing that has ever helped my attacks not evolve is to get up, walk, move. I also have done a crossword puzzle to distract myself. I think that if you are fixated on something complicated, you can trick yourself out of the panic attack. If you decide to go for a walk or get up, try counting backwards from 100, or something hard to do that takes a lot of focus. Take care, Amy

Hi old POTS friends, I finally have found a moment to post and to check and see how all of you are doing. I barely recognize any of the screen names these days because I've been out of the loop for so long!] My youngest daughter is now 7 months old and doing pretty well, aside from some nasty reflux. My older daughter just turned 4 and is doing great. I am pretty much in a state like I was when first diagnosed, although not quite as bad. I have had another big episode of postpartum weight loss that was odd because it came on at about 5 months after the baby was born, instead of right after like the first time. I am pretty weak, muscles are weak and uncoordinated, I have the usual fast heart rate, my immune system stinks, I'm pretty thirsty and have dry mouth especially at night, and I'm exhausted. But I am surviving. Just wanted to say hi. Would love to hear from those of you I know. Amy

I get PVCs on and off in spurts. I can go a year without them and then they come back for no good reason. I sometimes don't get them when I am stressed but do get them when I'm not. But if you have an otherwise healthy heart and no underlying disease, your body will tolerate the PVCs. They occur in something like 20 percent of the whole population, and some people don't even know they are having them. At one point I was having them every five to 10 seconds! Try to relax and have fun anyway by ignoring them.

LindaJoy, So sorry you are feeling like this. I suffered from agoraphobia when I first started having panic attacks, about 14 years ago. I had just left home for college and was having the attacks all over campus. I couldn't go to class or leave my dorm except for when my sister and parents came to see what was going on with me. I ended up working with a phobias therapist, who would make me meet her out in public places for sessions. We went to a different place every time we met -- out to lunch, to a class, even to church. It was totally strange but really helped. She was truly amazing. I really hope you are able to work through your fears. We are not always going to be a place where someone is going to know about POTS and be able to help us. There are times when your husband might need to be away. It is best to try and face these fears so you can live the way you want to live -- at least mentally; POTS can obviously take over physically. Best to you. Amy

Hi everyone! I haven't been on much lately due to the arrival 2 months ago of my second child. She's doing pretty well. We're struggling with her GERD (reflux), which is something new to me. My other child never was a spitter-upper, so we're learning as we go. So far, she's gaining enough weight to have the doctor feeling pretty good about things, but I worry about her esophageal lining getting damaged -- she's raspy sometimes and wheezy. But mostly pleasant and adorable! I'll update some pics to her Web site soon and post a link on the Chit Chat forum when I do. I am back in POTS mode, although not in as bad a place as many of you guys. I struggle mostly with muscle weakness and fatigue, plus now I have some irritable bowel-type symptoms that are new. And the dry mouth at night is back at full force. I wish I knew what caused this. My heart rate is under control with a tiny dose of Toprol and is better than it was pre-pregnancy, when I usually needed at least 25 mg. So I just wanted to say hi and let you know I miss hearing about all of you, but it's not easy holding a baby, providing much-needed attention to my 3-year-old (who's experiencing the typical jealousy associated with a new baby sister) and trying to get back to work part time. I'll try to pop on when I can. Amy

I get pretty sore since developing POTS, and I think it's because I lost a lot of muscle mass in the early stages of illness. So now, I have less muscle doing all the work, and it gets taxed easily. I also notice my joints are very sore when I work out because I have less muscle there to support them. Still, I'd rather be sore than weak! Amy

Mine have been pointing out pretty good since I breastfed my first child. I've given up on trying to find a swimsuit that covers them well! I usually try to wear a seamless padded bra, and that's the only thing that hides them. There are tons and tons of brands that carry a seamless padded style. There is this product called Lillypadz that is for breastfeeding women -- they are silicone pads that stick to the nipples to prevent them from sticking out through clothing and from the women leaking milk. I don't see why they couldn't be worn by non-breastfeeding women. Or maybe there's a similar product out there designed specifically for preventing nipples from poking through clothes ... Do you remember a few years ago when women were actually buying those sticky pads that were shaped to look like fake nipples under your clothes? Funny how some women would actually want people to see their nipples! Amy

Nina, Hope you are back to normal (or should I say, your more normal abnormal, due to the POTS and such!) soon. Take care! Amy

Thanks to you all! I added some photos on a Web site listed below. When asked to enter the password, it is charlie. I also sent some photos to the Faces of DINET address, too. Amy http://www.babiesonline.com/members/getpas...e=s/siobhancole

Hi everyone, Siobhan Cole was born on Thursday, April 26, weighing in at 7 lbs., 2 oz. Everything went very quickly and great labor-wise, opposite of last time (26-hour labor that time - yuck). I managed to get through without an epidural or any pain meds, and I think that really, really helped me recover quickly. Siobhan (pronounced sha-VON) is quite healthy but very sleepy, which is probably good for me. She's just an angel. I had no POTS-related problems during delivery and in the day after (except that I couldn't sleep at all the first 24 hours, which may be normal, due to adrenaline overdrive!). Unfortunately, I am better off pregnant than not. About two days ago the POTS fun began again, like it did after my last pregnancy. However, I know what's going on this time, and it's not as severe for whatever reason. But it looks like I'll have to restart my beta blocker by next week if my heart rate doesn't settle down. I'm running in the 130s when up and walking, and 80s and 90s at rest. I'm going to try to up my fluids, change diet a bit, add some supplements and see if I get any results first before restarting the meds. I will try to post some pictures later today when I figure out how! Maybe I can e-mail them to you, Katherine, to put on the faces page? Amy

I was tested for that right away when I had POTS symptoms. I can't remember what the symptoms are, but the parathyroid helps to control the thyroid, I think. My test was normal. Amy

Just thought I'd check in and ask for you all to send me some strong labor vibes! I've been doing remarkably well and feeling great this pregnancy. Now I just need to get this baby out. The only real issue is the seized-up intestinal motility that I've had on and off since I developed POTS, which I think is holding things up with labor. So off to the drugstore to explore the wonderful world of laxatives and fiber ... and maybe castor oil if I get desperate. My heart rate and BP have been excellent. I did have a BP elevation for about two weeks that seems to have resolved now that I stopped working. Heart rate is better when pregnant and off drugs than when I'm not pregnant, and I'm carrying an extra 38 pounds and a whole lot of fluid. So the fluid must help. I'll post ASAP after the baby is born. If nothing happens naturally, I'll be induced Sat. Amy

A regular dose of Klonopin (0.25 mg 2x/day was what I took) is really the only thing that's ever helped me in the 13 years I've suffered from panic attacks. At one point I also took Zoloft, but it killed my sex drive and made me more tired. Klonopin is somewhat habit-forming, so talk to your doctor about the risks/benefits. I also had some success with tiny doses of Effexor with breaking my hyperadrenergic attacks associated w/ POTS, and these are very similar to panic attacks in nature -- I would think the Effexor works to prevent panic as well. Amy

Melissa, I hope you are well enough to soon read all of these messages. So sorry you have to continue to go through this horrible ordeal. I wish you a dramatic, fast and complete recovery and hope you can stay as comfortable as possible in the meantime. Amy

Lisa, I've been short of breath at rest since my POTS developed and have no explanation as to why. I've had numerous tests -- from pulmonary tests, blood gases, etc., to heart function tests. No abnormalities. But clearly, I feel short of breath all the time. I constantly feel like I won't breathe unless I think about it. Wish I had ideas/advice for you. I have lived with it for 3-1/2 years now. I can only figure that on some level, it is either an emotional/neurochemical thing (because you can't detect any abnormalities) or it's something you feel but doesn't actually hurt you physically -- because I have had no complications because of it. Amy

Thought I'd check in with another brief report after my final ultrasound and an OB appt. today. All looked really good -- baby is actually very big, estimated at 6 lbs at this point, so much different than my last outcome (preeclampsia that caused my daughter to be very, very small). My heart rate is behaving and haven't needed any meds. I did take a baby aspirin this pregnancy due to research that showed it may help prevent preeclampsia, so maybe that's helping this time around. It's hard to know. We still have declined to find out the baby's sex and are going to wait until the birth. Anyway, hope everyone here is doing OK. I see some people have gone missing here and there, and I'm thinking of all of you and wishing for good health for everyone here! Amy

I use Simple Green lemon scent all over the house. It's one of the safest and cheapest products available. The fact that you can theoretically drink it makes me feel good about it. You can buy it at almost any hardware store and many grocery stores. I do NOT, however, like the original scent (green). It is gross. I also use very diluted bleach/water mixtures if something has to be disinfected, and vinegar/water mixture and an ammonia/alcohol/water mixture also very sparingly. Ammonia really stinks but cleans certain things very well. There is a line of products called Mrs. Meyers that also are very good and natural, but they are quite expensive. FYI, I also use some air freshener that is just made from oranges. I can't think of the name, but I love it because it has no garbage ingredients in it or perfumes. Amy

We want to wait until the birth to find out the baby's sex, Emily -- it's just so much fun that way. Katherine, I do have a pretty fair amount of swelling, but the compression stockings really keeps it under control on the days I have to go into work and sit at my desk (which is when it's the worst). On the days I'm home, I'm moving around enough that I don't have to wear them. I need to buy a new pair, though -- I've gained almost 30 pounds and the ones I usually wear don't fit very well these days! I shouldn't probably sugarcoat this pregnancy thing -- I still have shortness of breath, no improvement in muscle weakness, and actually a worsening of dry mouth (which now I know is somewhat related to hormones). But I can deal with this stuff knowing that my heart's not pounding out of my chest and I'm not drop-dead tired. Amy