MomtoGiuliana

Thanks Herdwoman... I guess there is such a grey area when in comes to diagnosing and treating arrythmias. How do you know the dizziness, shortness of breath and fatigue are caused by your arrythmias, and not by something else? I ask this b/c I have these three symptoms from time to time (had them constantly for awhile) and I thought these were brought on by autonomic dysfunction in general (a variety of causes, I guess--but primarily pooling of blood below the heart), and not by arrythmias that I also had, and still have from time to time. I guess the other thing I am getting at too is that I am kind of scared sometimes about what the future could hold for me and others on the board my age or younger, with this condition. I know that it is impossible to predict, but it seems like there are a number of women in their 40s and 50s on this board who have experienced a worsening of symptoms over the years to the point that they are disabled by it enough to retire early, etc. Anyway, I know you don't have answers to this concern, as the medical establishment doesn't either, at this point, except to say that most people with POTS "recover". I wish you the best. Thanks, Katherine

Hi Chris Congratulations on your pregnancy. I developed bad POTS with pregnancy that got worse post-partum (today I am much better--my daughter is almost 2). I also have Hashimoto's. I am so glad you are pursuing a correct diagnosis as early as possible. During pregnancy, and then later, during post-partum, doctors also told me that I was depressed and/or didn't exercise enough. I also saw a cardio with no knowledge of POTS who did an echo and EKG and pronounced me anxious. My condition continued to deteriorate until my endocrinologist suggested that I add salt to my diet (I had never been much of a salt consumer). I got much better for awhile, but at 7 months of pregnancy, I had to stop working. I was exhausted and dizzy nearly constantly. Anyway, you can read my "story" on the stories page of this website if you want. Although it is usually difficult to diagnose any condition during pregnancy, the bottom line is that I think if I had seen an electrophysiologist, I might have gotten better medical care. There are some medications that are safe during pregnancy that can help POTS symptoms tremendously. Instead I suffered through many scary months of not understanding what was wrong with me and being treated by nearly every doctor like I was mentally ill. Good luck and take care. Katherine

Herdswoman Your answer was very interesting to me. I appreciate that there are many nurses like you on this forum who can help us interpret technical things a bit. When you say you tolerated tachy arrythmias much better in your 30's, do you mean you have more symptoms now? Would significant symptoms possibly mean the arrythmias are no longer benign? Thanks, Katherine

Since I've been on an SSRI, my appetite has increased and I have not lost all the weight I wanted to following my pregnancy. Add to that, decreased activity (although I feel exhausted just from keeping up with my toddler). I also suspect I am retaining some more fluid than I used to, just due to keeping up a salt intake I didn't used to have to do, but not sure about that.

I experienced significant weakness in my limbs when my POTS was at its worst. I also experienced numbness--this would generally occur at night during sleep. I also experienced slurred speech and wondered if I had had a stroke for that reason, as crazy as it seemed. I was also pretty unbalanced, and would bump into things when I walked (which I didn't do much of during that time.) The really bad symptoms all came on pretty suddenly after my c-section. I had some minor headaches during that time too. And just general "brain fog"--like it took too much energy to think--I wouldn't characterize it as memory loss really, in my case. The good news--these symptoms have all pretty much resolved. I hope that is what is ailing you too (rather than something more serious) and that you will be on the mend as well. Take Care, Katherine

I know I have been on that awful downward spiral, and I have also been on that cycle of little to no sleep night after night due to insomnia. I agree about the sleeping pills--if you can possibly try to do it and can block out a good 8-10 hours. It helps the body and mind so much to be rested. You might only need to do it for a couple of nights to get your sleep cycle back on track. I find it helps to take a cool bath or shower before trying to go to sleep at night, if I am having trouble sleeping. Let us know how the appt went. Katherine

I heard a snipet of an old interview with him yesterday in which he said something to the effect of: don't take for granted that you can stand up, walk, and do the seemingly simplest of tasks. He also talked about human potential, and how frustrated he gets when he sees perfectly able-bodied people who don't strive every day to use their minds and bodies to their highest potential. I think we can all relate to this message. And I think until you do go through an illness, particularly a chronic one, you take so much for granted. Now, like him, we know better. I think Reeve, once faced with disability, was a great role model of hope and perseverance and inner peace to many, voiceless and unnamed people facing disability, as well as to those who are not.

Emily Happy (belated) birthday! I am so glad you have such wonderful, understanding support from your parents. I didn't realize at my 29th birthday that "aging" has its benefits, definitely. And, one of many things we don't have control over is the passing of time--only how we choose to use it. You have lots of time to get well and have a marriage and a family and do many other wonderful things. I wish you much better health in your year, and years, to come. Katherine

Amy, I agree with Merrill that your POTS was much more likely to have been brought on by childbirth/pregnancy than by a vaccine, particularly one that was administered so soon before the onset of symptoms. Four hours is not enough time for antibodies to start being produced, for example. Hope you are feeling better these days, btw. Katherine

Who is Kathleen? Is that her forum name too? Thanks, Katherine

Jessica I know, it is so hard to know what is the best for your child with all these vaccination options, and also with your allergy history. Ethan is in the recommended age group for getting the vaccine and he will be more vulnerable to flu now that he will be in daycare. Hope you can get some good advice from a doctor on this. Katherine

It is possible there is a trigger at home or at work. However, keep in mind too how much POTS symptoms can wax and wane. It could also be a coincidence. Until you see a repeated pattern, it will be hard to tease out any clear triggers. Can you try to eliminate any of those suspected triggers from your life for a week or so and see of you find an improvement again? Personally, I have had a hard time identifying any triggers, except for obvious ones like getting sick with a cold or not getting enough sleep or standing for too long in one place or getting too emotionally excited. I have relapses that seem to come on randomly. Regarding indoor air quality--EPA, for example, is now realizing this is MORE of a problem for most Americans than outdoor air quality. Besides obvious things like radon and cigarette smoke, our indoor air quality is compromised by cleaners, off-gassing of new plastic products, paints, varnishes, new furniture and building materials (which often off-gas nasty stuff like formaldehyde). Even "air fresheners" cannot be healthy as they release VOCs (which is what is also in most household paints). We spend a lot of time indoors in this country, even more when we are sick, so it does make one wonder whether indoor air pollutants could contribute to illness. Katherine

Here are some common sense tips to avoiding the flu and colds from about.com: Tips to Avoid the Flu Whether or not you got a flu shot, since it isn't 100% effective, you should follow these steps to help prevent you and your family from getting sick with the flu: Wash your hands often. Remember that one of the most common ways people catch colds and the flu is by rubbing their nose or their eyes after their hands have been contaminated with a virus. By washing your hands often, especially: before, during, and after you prepare food before you eat, and after you use the bathroom after handling animals or animal waste when your hands are dirty, and more frequently when someone in your home is sick, you may avoid getting sick yourself and keep your kids from getting sick too. Routinely clean, with soap and water, and disinfect surfaces, toys, and objects that younger children may put in their mouths. It may also help to wipe surfaces with paper towels that can be thrown away or cloth towels that can be washed afterwards. Use disposable tissues to wipe or blow your child's nose. Teach your children 'cough etiquette', which the American Academy of Pediatrics describes as teaching 'your children to turn their heads and cough or sneeze into a disposable tissue or the inside of their elbow if a tissue is unavailable'. Avoid close contact with people when you are sick. It isn't really possible to completely avoid people who are sick, so it is likely better if you just avoid exposing other people to your germs when you or your kids are sick. So don't go to school, daycare, work, etc., if you are sick with the flu. Avoid unnecessary contact with a lot of people for your younger children. It isn't easy to always tell when people are sick and some people are contagious even before they start to have symptoms, so don't expose your younger kids to large crowds of people if you don't have to.

Good point Merrill. This year the vaccine is being rationed. It is most important that the most vulnerable in the population get immunized. Some of us fit that category, others don't. Hopefully, our doctors can help guide us in that decision.

I think I remember that it is recommended that you get the shot before late November. It takes a few weeks for the vaccine to give you immunity. If you get it too late into the flu season it could end up not giving you the full protection available. Also, keep in mind, of course, it can't protect against every communicable virus out there. Katherine

Gena I got the vaccine last year and had no adverse reaction at all. I was so glad I did (and so did my baby daughter and my husband). My daughter is in day care part-time and gets a cold at least every other month. It cut down the # of colds dramatically and none of us got really sick at all during the fall/winter. It was worth it for me/us. For me, b/c my POTS gets bad whenever I get sick. This year I wonder if I'll be able to or even should get one since there is such a shortage. BTW, I also have Hashimoto's. Katherine

First, Corina, I am glad you got out and were able to do some things you enjoy. So important to your health! I have always had some mild issues with disorientation--it is easy for me to get lost in a new place. Also, I can get sensations of feeling a bit overwhelmed in a busy urban area. When my POTS was at its worst, I experienced "brain fog" I suppose--I felt like I wasn't completely connected to my surroundings. I had to work hard to THINK some days. Jessica--that is so funny how you describe yourself, only b/c it is so totally like me. I also don't know if that is my personality or the condition. It drives my husband in particular, crazy at times, because he is so organized and self-disciplined. Corina, I wonder if your experience of disorientation was also caused by being inside so much recently. Kind of like a form of culture shock.

All I can say is that you are the complete opposite of me! Except, I did feel terrible postpartum for 6 months. I know your situation is considered the norm for POTS, and many women with POTS do use BCPs--I don't know about other hormone therapy. Of course, keep in mind that there are risks associated with taking hormones, especially after age 35, so you would want to make sure the benefits continue to outweigh the risks as you get older.

Ernie I don't have a generally problem with fainting, however, I think I know something of what you are talking about. I sometimes, still, even with vast symptom improvement, dream that I am very weak and unable to walk, and/or that I am having trouble breathing. I never used to have dreams of that nature. I don't notice feeling worse the mornings after such dreams, but I do wonder if something physiological isn't contributing to those dream sensations. Katherine

So sorry your doctor has been so difficult. I don't understand how he can say you are "clear neurologically" just b/c of an MRI. When I saw a neurologist (during my long attempt at diagnosis), the MRI was one of at least 10 tests she did. But, anyway, good that he has referred you to a cardiologist. Have you had a tilt table test? If not, that's probably the next step, along with finding someone who knows something about POTS--probably an electrophysiologist, as a previous post stated too. Best wishes. Diagnosis can be a long process.

That's wonderful news, Jessica. I'm so glad for you. It makes me think I should try again for alternative insurance (I was denied about a year ago by two different companies). I have excellent insurance through my part-time work , but I am paying $350/month for it. Katherine

Hi Nicole's mom I am sorry to hear Nicole has had a particularly difficult couple of days. Unfortunately this condition can affect nearly every function of the body--including the brain. Most of us have experienced significant anxiety and panic attacks--they only add to the difficulty of managing the condition. I am not familiar with the drug you mention, but I have used pindolol for the past 20 months. 5 mg/day--which is a very low dose. It has helped me a lot with the discomfort of a rapid heart rate and ectopic heart beats. I think it also helps a bit with anxiety associated with the extra adrenaline the body produces with POTS. Beta blockers will lower blood pressure as well as heart rate. I believe you said Nicole has been experiencing high blood pressure recently? If that is the case then she is more likely to benefit from just a beta blocker than would others with POTS who have the high heart rate, but low blood pressure. As Merrill mentioned, those patients generally need to add a drug that increases blood pressure as well. As far as the anxiety and depression, one thing that helped me, that Nicole may not be up to (I was barely up to when I started it) was learning some breathing exercises. I went to a psychologist with expertise in biofeedback and other techniques that enhance healing. Basically, in my case, he felt I would benefit most from learning exercises that would relax my body as completely as possible--as it is probably true that a relaxed body and mind heals better and faster than a "wired" one. I found this very helpful. Also, he helped me talk through the emotional issues associated with chronic illness, mostly with me, but my husband was involved a bit too. Are you familiar with Dr. Andrew Weil? I recommend this book frequently, because it helped me: Spontaneous Healing. It is a hopeful book with case studies and basic suggested strategies for healing from what seems the impossible. There is nothing about POTS, but he does discuss the autonomic nervous system. At the end are breathing exercises. There is one in particular that he says is supposed to help calm/even out the autonomic nervous system. I use it still when I am feeling poorly, or even just in general to help me relax. Anyway, it is something safe and non-invasive to try. I feel for Nicole. Your descriptions bring back to me vividly what I experienced with POTS too. I am so glad you found us b/c it can feel like a lonely world when you are facing this chronic illness that no one seems to know anything about. Let us know how she is doing. Take care, Katherine

I've been having a bad bout of restless leg (and arm!) syndrome at night. It seems to reach its peak just as I am trying to get to sleep. I've had this for a long time (and I think I have read that it is very common in the general population), but it has been keeping me from sleeping as well as I could in the past week. Is this considered a POTS symptom? Does anyone have any suggestions for relieving it? Thanks!! Katherine

Nina--Hope you start to feel better soon and find out what it is causing the pain. I know from my experience that the unknown can make pain even worse. Take Care, Katherine

For what it's worth, mine have always been normal. I do need to find out more about restless leg though--I have been having it a lot recently, even interrupting sleep. Katherine