MomtoGiuliana

Gayle I was once given an event recorder, but nothing happened to record, other than some odd PVCs. I get this flutter event very rarely. Last time before last Friday was a year and a half ago. If it happens again soon, I am going to ask my doctor if I can try another event recorder--just for peace of mind, I guess. Thanks, Katherine

Does this event feel like fluttering in the chest? This is what I have experienced from time to time, and it is scary. Sometimes when I get this I feel a bit faint and very slightly sick to my stomach, too. It is never sustained for longer than 5 to 10 seconds in my case. I have described this to my cardiologist and he wasn't concerned (I also responded to this post up above). Anyway, I had another event last Friday, and it again really scared me. Katherine

April Congratulations on being in the homestretch. I am so glad that your pregnancy has been so trouble-free. I was also VERY VERY tired those last two weeks (and actually my daughter was a bit late). I think being tired the last couple of weeks is very normal. However, I was, as you describe, extremely tired and also sleeping 10 hours a day or more! I do believe that this late pregnancy excessive exhaustion was POTS-related for me. If you need to sleep, just sleep. I think your body knows what it needs. The rest is good for your baby too. You have very busy days and nights ahead, so give yourself extra care now. Also try to keep eating as well/healthily as possible. Take care, Katherine PS My blood pressure did spike up very suddenly in the last few days of my pregnancy, which is why I was induced at 2 days late. Hopefully, your doctor is checking you pretty regularly now. I think many of us with POTS developed high bp towards the end of our pregnancies. Not anything to be worried about as long as you are getting regular checks, you are going to be absolutely fine.

Mindy--glad to see that you are under great care. I hope things start to improve for you. Katherine

If these symptoms don't abate on their own in a short time, I would think it would warrant more investigation. For what it is worth, ALL of the symptoms you describe, even the sudden strange pain (except mine was in my lower back) I had when my POTS was severe. They eventually went away for me. They COULD all be explained by POTS, believe it or not. Unfortunately this condition waxes and wanes, often with no pattern or explanation. Do you have a POTS expert caring for you who can review these symptoms and your medications? Katherine

Amy I'm so sorry to see that the weakness and fatigue is still not letting up. First I hope you are keeping up with fluids and salt. I say this b/c I still have times of feeling weak and yucky and then if I radically increase salt and fluids (like dilute fruit juices), I feel much better. I am also slightly hyperreflexive, for what that is worth. No one ever explained to me what that means, but I assume it must be related to being in, to some degree, a hyperadrenergic state. My vote is that you see the rheumatologist, and don't worry about your general practitioner being angry. For one thing, you can tell him that your psychiatrist strongly recommended it. This gp must understand that you are under a great deal of duress and discomfort, that you feel unwell, and that you need answers. It sounds like this psychiatrist understand that! If he can't grasp that, then perhaps you need to try to go to another gp. I had a horrible gp who insisted I only has psychiatric problems, for months. He was so mean to me about it--so I understand where you are coming from. You don't want to alienate him further b/c you need his help. But if he is this unhelpful, you probably are better off trying someone new, if that is possible. Are you seeing a POTS specialist? Do you feel that this person is giving you the best care possible? It may be that you will need to try some different treatments for POTS, as that seems to be a great part of your problem--based on your symptoms and test results to date. Let us know how the test goes. Katherine

Kristen I hope you are coming up out of the POTShole now. I know how hard it is to cope with this and care for young children as well. And how awful to go through this without your husband there. It can be confusing and scary for them to see their mother incapacitated. However, I so agree with Nina about the resilience of children. I am sorry your husband is having trouble coming to terms with your condition. Can he come with you to a doctor's appointment in the near future? I remember that you said that you had recently stopped the SSRI you were taking. I can't help but wonder if that could be playing a factor for you now. In my case, about 2 months after I last tried to cut my SSRI, I had a relapse of symptoms. Not as bad as yours, but definitely affected my day-to-day functioning. I went back on the SSRI, and seemed to stablize within a week. I was quite surprised by this, as I wasn't sure the SSRI was still helping me. Apparently it is. I hope you have some people you can call on for help. Please keep up your fluids and salt and try not to push yourself for a few days. Let us know how you are. Katherine

persephone I so feel for you. I have also been disabled by POTS and felt like my life came to a standstill, and it does induce depression. I really like everything everyone has suggested and said to you in this thread. How old are you? SSRIs can have a different effect on younger people than on older people. If you are cutting back on one, it would be best to do that with the guidance of a doctor, which I hope you are doing. How long were you on the SSRI? It took several months of being on a low dose SSRI for me to see a benefit (and in the meantime it did make my POTS worse). An SSRI may very well not be helpful for you, but you do have to be careful about how you wean off it, to minimize mood and other side effects. There are many different treatments for POTS, and most people get better with time, especially with appropriate treatment. Are you under the care of a doctor who is willing and knowledgeable to help you try some different treatments if you have been on one for awhile and it is not helping much? I think you will move on and realize many of your dreams. Coping with POTS can be a huge challenge (or not--depending on how things progress for you), but it doesn't necessarily prevent you from doing things you really want to do with your life, and it doesn't diminish you as a person one bit. It has taken me a long time to understand that life does not happen in a safe, predictable, happy progression, or that, at least, there is no guarantee that it will. There are many many unexpected bumps and knocks along the way. With experience with these challenges, we learn how to manage the next one better. You are challenged with more than the typical person your age is. That certainly feels unfair and it certainly is frustrating. I believe that you will be able to find ways to cope and manage and THRIVE. Keep writing as you need to--we're here to support you! Katherine

Danelle Thanks SO MUCH for posting this. How weird that I was having the same symptoms Friday too. And, I also wondered if a change in temperature set me off kilter! I haven't had arrythmias like this for about a year and a half. My heart rhythm was really off at one point for about 15 seconds--which feels like forever when it happens--and I can't remember an episode lasting this long for me before. I felt freaked out too. I also thought about 911 and the ER--it's like all you have learned and know about POTS goes clear out the window! Instead I called my husband and asked him to come home for lunch. It allowed me to lie down for awhile while he and our daughter had lunch. Then I called my POTS doctor's nurse. She called right back and was SO kind. I described what happened in detail and she asked a few questions and really reassured me that I was ok. She gave me the same advice we give each other here all the time--increase your fluids and salt. I did this and felt tons better by the end of the day. Now today I haven't noticed any irregularities. Anyway, I am with you! I know how scary it is. Hope you are feeling reassured and better! Katherine

To answer your question, tearose, the guidelines are published every 5 years. Ernie--same with me! I never added salt to food, rarely ate prepared foods. I always thought it was unhealthy, when for years it might have actually helped reduce my symptoms. Julia--yes I agree about the transfats--they really should be avoided, yet are in many prepared foods, especially crackers, cookies and breads. And I agree, it is disturbing how many children are overweight now. When I was a child, there were maybe one or two overweight children in any given classroom, now it seems it is almost half the kids. The new recommendation for 4-5 servings of vegetables and 4-5 of fruits for a 2,000 calorie diet is going to be hard for most Americans to comply with. I am a vegetarian, yet I don't think I eat that many servings on many days. Katherine

Hi--this has been addressed several times in the past year, so I thought I'd send you a link to one of the longer discussions: http://dinet.ipbhost.com/index.php?act=ST&f=1&t=949 Hope this helps.

I know this is probably the least of our concerns, but I just thought folks might be interested in seeing this article and link, and noting that the U.S. gov't dietary guidelines still tell everyone to keep salt intake at less than a teaspoon a day, with no qualifying statement that salt could actually be beneficial for some people and needed in larger amounts. I doubt the same could be said for fat, sugar or alcohol intake! Gov't Urges Most Americans to Cut Calories By LIBBY QUAID, Associated Press Writer WASHINGTON - The government on Wednesday urged most Americans to eat fewer calories and exercise 30 to 90 minutes a day, updating guidelines that advised people to lose weight but gave few specifics on how to do it. The new dietary guidelines will be used to update the familiar food pyramid, which most people recognize but few heed. That revision, expected in the next couple of months, would be the pyramid's first since it was created 12 years ago. Among the possibilities: the pyramid could give way to a different shape. Federal officials acknowledged that much of the advice will not be new to Americans, who spent millions on diet books trying to lose weight. "It's really common sense. Do you want to look better? Do you want to feel better?" Health and Human Services (news - web sites) Secretary Tommy Thompson said. "You lower your calorie intake, you lower your carbs, your fats. You eat more fruits and vegetables, and you exercise. That's as simple as it can be. That is not too hard." Thompson noted that two in three Americans are overweight or obese and suggested that the guidelines are well timed, coming in January, soon after many have made New Year's resolutions to live healthier lifestyles. The guidelines, developed by HHS and the Agriculture Department, strengthen the government's advice on whole grains, telling people to choose whole grains such as whole wheat bread instead of refined ones like white bread or bagels. People should also eat a lot more vegetables and fruit, particularly whole fruits and vegetables rather than juices, the guidelines said. And they recommend three one-ounce servings of whole grains each day, such as certain unsweetened breakfast cereals, to reduce the risk of heart disease and help maintain weight. Agriculture Secretary Ann Veneman said the popularity of diet books and products shows that "Americans are interested in leading healthier lives, but they want credible, consistent and coherent information to help them make the best possible choices." Thompson added that people should not assume that researchers at the National Institute of Health are going to come up with a miracle diet pill. "Every American is waiting for NIH to come up with that pill," he said. "It's not going to happen." The government's advice is not really new, but officials see the guidelines as an opportunity to change people's ways. "It has been a big problem in the past that basically, the federal government has published a booklet and then crossed their fingers and hoped that Americans ate better," said Margo Wootan, nutrition policy director for the Center for Science in the Public Interest, a health advocacy group. "That's clearly not been enough. What we need is significant investment in programs and changes in policy and the food environment that help Americans to eat better and watch their weight," Wootan said. The guidelines were based on recommendations of a 13-member panel of scientists and doctors who spent nearly a year reviewing Americans' diet and health. The committee said people lead sedentary lifestyles and choose their food poorly, leading many to exceed the calories they need even as they fail to get enough nutrition. Controlling calories ? not limiting carbohydrates, as some popular diets recommend ? is key to controlling weight, the panel said. Also key is daily exercise. The panel recommended a minimum of at least 30 minutes of moderate exercise ? brisk walking or gardening ? on most days. But it said many adults need to exercise for 60 minutes or more to prevent weight gain, and people who have lost weight may need to exercise for 60 to 90 minutes to keep it off. The panel said to choose fats and carbohydrates wisely. That means severely restricting trans fat that can clog arteries and eating fiber-rich whole fruits and whole grain breads. People should eat five to 13 servings each day of fruits and vegetables, depending on their age and level of activity, the panel said. The committee recommended cups rather than serving sizes in many instances; by this measure, the average person would need 4 1/2 cups of fruits and veggies to maintain his or her weight. The panel also said people need to reduce the amount of salt they eat to about one level teaspoon each day, because salt is linked to high blood pressure. It said those who drink alcohol should do so in moderation, about one drink each day for women and two for men. ___ On the Net: Dietary Guidelines: http://www.health.gov/dietaryguidelines/ sodium guidelines chapter: http://www.health.gov/dietaryguidelines/dg...df/Chapter8.pdf

Ernie Congratulations to your niece on a most wonderul accomplishment, and for her new joy. Just curious how she got diagnosed during pregnancy. I didn't think a tilt table test, for example, was really a good idea or even used as a diagnostic tool during pregnancy. Also, when I was really sick with POTS during my pregnancy, my doctors kept saying that it was really impossible to diagnose me with anything b/c of all the variables that occur with pregnancy. This was so frustrating to me! Katherine

That's a very hopeful story, Ernie. Thanks so much for sharing. How did the birth process go? I hope she didn't have to have a c-section. Katherine

Sorry you haven't gotten any replies yet. I don't know the answer to your question. However, it is possible to "pass" a tilt table test and yet still have POTS. This is b/c POTS can be so variable from day to day in intensity/symptoms--I suppose it is also variable from moment to moment, and certainly under different environmental conditions, our symptoms can also vary. It is confusing to get three different diagnoses. Who were these doctors? Any of them specialists in dysautonomia? I would recommend finding a specialist to get an answer to your question and to start any treatment, if warranted. Good luck, Katherine

To brush off a CHILD's complaint of pain as psychological--that's truly unbelievable. Mary--glad to know you have some support from your mom even tho she is not close by. You "sound" more positive today. Good to see. We are here for you and hope better days for you and Marissa are near. Katherine

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Mary I am so sorry to read this and see that you are still struggling to get your daughter proper care, while also facing your own health challenges. I am very sorry to see that you do not get proper support from your husband. I remember reading recently how stressful a child's illness can be on his or her mother, to the point of affecting her health. I am not surprised you are struggling so under these circumstances. I know you are an excellent mother who is giving all you can, and more, to your daughter. Do you have some family members or friends who you can talk to or you can even ask for some help? You definitely need support and are not getting it. If counselling isn't possible, then friends or family really need to help you. Sometimes it helps to prioritize tasks and to give yourself small, manageable goals each day, week or month. You can't do everything, so don't try to. Do what you need to do to take care of yourself. When I was incredibly sick with POTS, I felt SO guilty that I wasn't a good enough mother to my daughter. I was so focused on myself, when every day should have been about her, I felt. Then a friend of mine described a metaphor that made sense to me. You are always instructed in those emergency instructions at the onset of an airplane trip that in the event of an airplane emergency where the pressure lowers and the oxygen bags drop, to place the face mask on yourself first, and then on your child. This is because if you are overcome with lack of oxygen, not only are you useless to yourself, but also to your child's well-being. For preservation of both--you must take care of yourself/stabilize yourself first, so that then you can turn your attention to your child. This is not a selfish act--but the most caring and prudent one! I would remember that metaphor a lot when I was feeling horrible about my parenting. Hope that doctor calls back and that tomorrow is a better day for you both. Katherine

That is a lot of stress, and I would have a hard time with that too. I'm sorry that you are going through a separation. If possible, I try to set aside time each day for some yoga and meditation--even if it is just to sit in stillness for 5 minutes. I also try to pay even more attention to my diet during stressful periods--more fresh fruits and veggies, skipping any sugar-laden foods. Also, I try to do something I enjoy that brings me some peace--play my violin, listen to music I particularly enjoy, take a walk somewhere quiet--even if it is just down the road. Also, talking to friends helps--if it is a friend who understands, will listen and won't tire you out instead with his or her problems. Take care, Katherine

avais So sorry you have had a relapse attack. I think it is very very normal to feel incapacitated, as you describe, during one of these "attacks". As far as working through it, all that has helped me is 1) understanding at some level what is going on physiologically and knowing that it is not life-threatening/dangerous; 2) learning some relaxation/breathing techniques and trying to use them. I have had onset of symptoms when lying down, especially after having been in bed, even asleep for awhile. I have always suspected it has to do with the blood pooling that occurs when you are lying down and not moving around much. I still get symptoms like sudden severe tachycardia and chest pain at night, from time to time. As far as developing another bout of POTS, it might be helpful to try to identify any trigger that might have brought this on. Sometimes there is an underlying factor that brings POTS back on--illness, injury, allergy, stress, etc. If you can identify that and eliminate it, it might help. Sometimes though, there is no identifiable trigger (or much you can do about it.) Are you on any meds for POTS? Can you increase your salt and fluids intake for awhile and see if it helps? Hope you start feeling better soon! Katherine

Paige I am so sorry that you are having all of these difficulties. I cannot imagine many things more stressful that fearing losing custody of your children. I am not an attorney nor do I know what state you reside in, but my sister is an attorney and has dealt with family legal issues like this in her work. On this basis, I agree with what others have said that it is very unlikely that he could win such a battle. You've gotten good advice from the others above. I hope this is just an idle threat that will not go any further, for your sake, and the sake of your children. You definitely don't need such stress. Take care, Katherine

Emily I don't know for sure why we have this diurnal cycle. I have read, I think I am remembering this correctly, that we retain fluid better later in the day b/c of a natural hormonal cycle that includes cortisol fluctuations--cortisol levels are naturally higher at the end of the day? I might not have this exactly right! But, it has to do with blood volume, in any case. When I was very ill, I remember always looking forward to that window of time between 4 PM and 8 PM when I would feel well enough to sit up for awhile and eat a proper meal and feel 50% human, at least. I am sorry that exercise hasn't helped you much yet. I think it is good to keep trying, without pushing yourself and ending up in a another relapse. Hope you got some relief from your gallbladder pain and good sleep last night. Katherine

I just wanted to add--I haven't seen this comment in this particular series of posts on exercise--that many POTS patients tend to feel best at the end of the day. I know this is still the case for me. For that reason, exercise after 4 PM or so (or whatever time of day you find you become less symptomatic if you have this diurnal cycle) may be more helpful than trying to do it first thing in the AM. Katherine

Lisa You've gotten great ideas here. You definitely will want to take it slowly, but exercise is important to re-condition yourself. It is important to strengthen the muscles in your legs, in particular. Some days, cleaning the bathroom truly is exercise enough. If that tires you on some days, it probably won't be helpful to push yourself further that day. I do find still that any cleaning work that involves leaning over or reaching up can be pretty tiring. What worked for me was starting with floor exercises, as I felt less fatigued doing any exercise on the floor. Then I started walking everday, pushing my daughter in her stroller. At first for just 5 minutes, and then working my way up to 30 minutes +. I also started doing more yoga (than just floor exercises). I so agree with Merrill--yoga is generally very beneficial. There are many good tapes/DVDs available. I don't have any indoor pools nearby, so I never tried pool exercise, but water exercise is supposed to be especially good for recovering POTS patients. Take care, Katherine

Hi Mindy I just want to let you know I am thinking of you and hope this transition to other medications and treatments is very helpful to you. I am glad you are getting state-of-the-art treatment and care now. I am worried about your blood clot, particularly. I have never heard of a connection between POTS and blood clots--in fact, I think some POTS patients are prone to the opposite problem(?) I can only say that I understand where you are. It's perfectly ok to cry--sometimes that's all we can do! I had those times too. I wish someone had an answer to your question about what to expect regarding the future. I think what you can do, besides pursue the best care possible, is try your hardest to believe that you will improve. The mind is powerful. AND, always remember that many people with this condition do improve greatly over time, although it does take some people longer than others. Good luck with your stay at Cleveland and please let us know how it goes. Katherine