MomtoGiuliana

calypso It will probably take your body some time to adjust to the altitude change--more than the average person. I didn't know I had POTS when I went to the Andes in 2000. It was my first experience with strange symptoms. From the moment we landed at the airport and I had to stand up, I knew I was going to have trouble. I felt dizzy and like I couldn't get enough breath. I had the worst time adjusting of everyone in my group and I had to basically rest in bed for a day. After 3 days, I was ok and was even hiking (lightly). So, you may find you will need to take it easy and let your body adjust. Hope it goes well and that you enjoy yourselves!

migraine--your description of your pre-school daughter and doctor visits tugs at my heart. Young children are such troopers. Of course you have no choice when she is running fevers but to take her in and have her tested for things. I really hope that you can get answers. My 20 month old daughter was running a high fever for 5 days before her doctor agreed to see her on Tuesday. Poor thing, it turned out to be an ear infection. She's now on antibiotic, but has been through such misery. Let us know about the next round of tests. Katherine

Regarding genetic connection--I think there must be one--in some to many cases. But, right, there is so little known, and there are most likely cases with no genetic cause. Actually, my *primary* reason for not having more children is two-fold--My husband and I decided even before we got pregnant the first time that we only wanted one for ecological reasons and that we also have a strong interest in adoption and two I had such a difficult pregnancy, birth and post partum experience mostly due to POTS that I don't want to risk going through that again, or it being worse the 2nd time. So, I guess the concern about passing on POTS is the icing on the cake, so to speak. POTS isn't the worst disease/syndrome possible to pass on to your child, of course, if indeed that were to happen. And treatments will improve over time too. I agree with migraine that the fertility gods can bless us at unexpected times! There are so many success stories, and surprises, out there. I wish you the best Merrill in your continued quest. migraine--please keep us posted!

migraine I hope you get the answers you need. I so understand your concerns. I also worry about my toddler daughter and also have guilty feelings that I may have passed the problem on to her as well. At least I hope we will be armed with more information and better treatments in the next generation. The odd thing, in my case and perhaps yours too, is that my mother does not have these problems. So, the genetic connection is not really clear in my case. My mother's mother may have had undiagnosed POTS/NMH. She had odd symptoms especially in her 30s and 40s that were never explained--fatigue, fainting, very difficult pregnancy/birth/postpartum. One of my three sisters has also been diagnosed with POTS. So far her symptoms have been mild enough that she has carried on with her life in a reasonably normal fashion. Anyway, I am hopeful that my daughter will be spared this. I have to say it is another one of several strong reasons I have personally chosen to stop at one biological child. As far as the high temps--I am going through that right now with my daughter. She has had a temp of 102-103 since Friday. I've called her doctor twice and they don't want to see her b/c they say it is viral. It probably is. It is so hard to see your child miserable and you wish it athousand times over on yourself, rather than your child having to suffer. Maybe we do need a POTS parenting forum! Hope the appointment is helpful. Katherine

POTSparent What is the name of your daughter's blood clotting condition? I just wonder if I should also be tested for it. I had such significant blood loss during childbirth that I had to have a blood transfusion. I have fairly heavy periods too. I've never noticed significant bruising problems though, or excessive bleeding when I get a cut. What symptoms did your daughter have that led to testing or the diagnosis? Thanks! Katherine

Nina--so sorry about your fall. Hope your symptoms improve rapidly. I am also a klutz. I guess it's part of the poor balance thing we POTS patients have. I am also tall, so the combination is particularly bad. I hit my head really hard on a low ceiling beam several years ago and had a headache and dizziness for three weeks! I even had a CAT scan but they didn't see any bleeding/swelling/etc. I know how miserable you probably are! Rest should help if you can do it.

Hi beala I understand what you and your son are going through. I also had terrible brain fog and a whole host of POTS symptoms when I started an SSRI. It took 6 weeks to see ANY improvement. The first two weeks I was worse! After six weeks, it seemed I slowly got better each day. I hope this is the case for your son (that he starts to see improvement). I know I have read and heard that SSRI's may not be as effective or have different effects on teenagers than on adults. Katherine

I am very certain that POTS patients are not more likely to develop blood clots. That has nothing to do with autonomic dysfunction. But, I see your concern. If blood is more likely to pool, is it also more likely to clot? It's a reasonable question to ask a cardiologist who has expertise in POTS. I think the answer would be no, only b/c my doctor has never told me I run that risk, nor have I read it anywhere.

I don't have much to add except that, although I don't know your specific case, I have never heard of a doctor advising a POTS patient not to fly. My POTS specialist has never told me not to try any activity. However, as others have already said, you do want to make sure you stay hydrated, etc. I have not flown since being diagnosed, but will fly in about a week an a half on two short flights. Like ethansmom, I am more worried about standing on long lines with my toddler in tow, than the sitting on the plane part of the journey. Even prior to diagnosis, I have to say I always felt "odd" after flying--a bit shaky, a little dizzy and super thirsty. I also do horribly at high elevations, although I can adjust, it just takes me longer than most people. Personally, I would question your doctor's advice. That restriction is certainly limiting and there may be no need for it, especially long-term.

Calypso wow--that seems very quick. That's wonderful. It took probably 6 weeks for me to notice any difference. And actually, I remember my electrophysiologist telling me it would probably take awhile. He also told me the same things Nina says in her post above. He explained that he did not believe I was clinically depressed or had any other kind of mental condition, but that SSRIs have other effects--specifically he also said it makes your blood vessels more contractile, thus not allowing as much pooling of blood. Hope you continue to feel very well. I also ask the same question--will I have to take this drug forever and what are the long-term risks/side-effects? I would like to try to wean off it eventually. My doctor isn't ready fo me to try that yet. He said he has seen many patients get very well with SSRIs and then go off them and go back to where they were prior to being medicated. All I keep reading and hearing is that SSRIs are very safe for long-term use. Hope that continues to be the prevailing view. Katherine

Nina So sorry. Even tho I hadn't responded previously, your friends were in my thoughts--and are.

Yes, even tho my most severe and all my disabling symptoms have disappeared, I do still get blood-pooling in my hands and ankles/feet.

Ernie You are SO right, I think. We Americans have developed a very narrow definition of happiness and success. It's quite sad, and it causes much angst. Look at the rate of divorce nationwide (50% or so of marriages these days). We are also killing the earth with our highly consumptive habits. If everyone on the planet consumed at the level Americans do, we would need 2 to 3 more earths to sustain it. I think our culture encourages us to substitute fulfillment in personal relationships and community connection with things, and it is pretty empty. So many of us are caught up in that spiral and don't stop to think about it. I think chronic illness, like what we have all gone through, is an opportunity, though painful, to reassess our values. In an odd way, we are lucky. But, I also think that more and more Americans are starting to reassess this mainstream consumer-oriented culture. There is a trend, I have read, of more women staying at home or working part-time, for example, with their young children, and giving up the new SUV, etc. Anyway, I do think that a spouse or partner of a person with chronic illness also has to go through this process of reassessing the narrow definition of happiness and success.

I am taking Prozac. It took awhile to adjust and I felt worse during the adjustment period, but I think it helped me to recover. Besides worse POTS symptoms during the adjustment period, I had increased anxiety and panic attacks, diarrhea, insomnia, fatigue. I would say it was probably 6 weeks before I noticed any benefit--so you may find you'll have to stick with it for awhile before you see any positive effect.

Danelle Are you experiencing menopause now? My specialist told me that he has been treating women with POTS long enough now to see that POTS can flare up again at menopause and then symptoms often improve again. Oh, I just saw you are 37, so that is not likely. But, I also see that you were just diagnosed 2 months ago. It may be that you haven't found the right treatment yet, or there hasn't been enough time on the treatment to get symptom relief. Katherine

Danelle You are going through a tough time. You must be a strong woman. I think my husband would also be like yours if he had to deal with me having severe POTS that long. Of course it affects your relationship--and it certainly sounds like counselling would be a good idea, if he would agree to it. I know it is hard b/c I do the same thing, but, don't blame yourself for your illness. There is nothing you could have done to prevent it and it sounds like you have done everything you can to try to fix it. Would he consider talking to other spouses (other men going through the same thing?). I don't know if that would be helpful to him. I hope you are able to find a way through this together.

Jessica Is it something about our culture that makes men especially tend to be in denial about things like illness and uncertainty? My husband is very similar and he is 50! Part of it for my husband, and perhaps for many men in our culture, is he does not like to feel like he is not 100% in control. It's true I am working part-time and I have hopes that I will eventually move on to full-time work (no plans to now with Giuliana still a toddler). What frustrates me is that my husband acts like I have no challenges to my health. I guess this is partly b/c I don't usually complain--and you are probably the same way--like probably all of us with chronic illness tend to be. He gets aggravated sometimes b/c things are in disarray around the house, I didn't vacuum out the car, etc. On occasions when I do try to explain my symptoms and the fact that they wax and wane, he either seems surprised or somewhat dismissive--like I need to change my attitude and everything will be like it used to be. When I was very sick he was supportive, although I know it was scarey and emotionally draining for him, and an unexpected financial burden, plus he had more responsibility around the house--making meals, etc. Spouses/partners of people with chronic illness need support, and education, too, that's for sure--just like we do. I think men are so much less likely in our culture to seek out this kind of help though. I think it would be really great if and when POTS patients get together for conferences or simply get-togethers, that plans are made for spouses/partners/caregivers to be involved too--to meet other patients and spouses/etc. This would help confirm to them that this is a real illness and also perhaps help them to discuss any concerns or questions they have. I also agree with Calypso about encouraging your partner to write down feelings, questions, fears, ideas. I think writing exercises can help many people to focus and express their thoughts. Sometimes my husband gets very frustrated and he finally writes me an e-mail. That sounds strange and impersonal probably, but I think it is easier for him sometimes than expressing the same thoughts in spoken words.

Good you went to the ER to make sure you were ok. I think so many of us have been through this--i.e., trips to the ER. I know how awful it is and frustrating. Hope you continue to improve.

Calypso Thanks for posting this. I'm not a doctor or other medical professional, so I can't comment with any medical authority. However, I'll tell you my opinion. And I will be interested to hear other opinions and also if anyone shows this to his or her doctor, what they have to say. This study specifically identified abnormal heart rate recovery as a marker for potential heart disease and sudden death due to abnormal heart rythm. That is different from tachycardia, PVCs, PACs etc that POTS causes. I don't know if it is typical with POTS to have abnormal heart rate recovery, but I have never heard or read that (and I admit I don't know how that is defined). But for example, when I exercise now, my heart rate goes up during exercise and then goes back to normal rate within minutes of subsiding my exercise. When they use the term autonomic dysfunction in the context of the article and study, they may specifically be referring to individuals with pure autonomic failure, which is very different from POTS, although shares some symptoms. They also point out this is ONE of many factors that increase risk of heart disease. I think there is so much not understood still about both POTS and heart disease, let alone a connection between the two. We may be the generation of guinea pigs! But, also keep in mind (to reassure yourself) that 1) many people recover from POTS to a reasonable level with only minor symptoms most of their life and 2) many of us know family members who exhibited POTS symptoms, yet lived long lives and didn't die of a heart-related problem. Katherine

April-- The short answer is that most women with POTS feel great/better during pregnancy b/c of the ability to retain more fluid. I have also always had low bp, but developed pregnancy-induced hypertension in the last few days of my pregnancy. Obviously that will be monitored and hopefully you won't have that problem. I felt horrible during pregnancy, but had no diagnosis til 4 months post partum. A diagnosis would have greatly helped my symptoms and the problems I had at labor and delivery. Katherine

Yoga helped me tremendously to get function back and relieve stiffness. Also, I have read that walking helps regulate the autonomic nervous system. This is hard to impossible for many of us, but I keep reading and hearing that exercise is so important for POTS patients. Even though it is exhausting, good for you Ling for trying and pushing yourself, it may not seem like it is helping immediately, but perhaps you will find slow improvement over time from certain exercises. Anybody see a physical therapist with knowledge of AD/POTS who recommended particular approaches to exercise? Basically, I told my cardiologist that walking up stairs felt awful and was exhausting, and he said, go on and keep doing it b/c your heart is fine. So, I did, and now, MONTHS later, it is getting a lot easier to go up the 3 flights of stairs to my office. But it HAS taken time and there were set backs. My sister is almost done with her physical therapy degree and she has POTS, so maybe she'll find a way to specialize in that!

Merrill I used to get numb arms while sleeping nearly every night--even a numb neck, hands, scalp and chest. I think this must be POTS-related.

Morgan I am so glad you have such a caring doctor. I hope you are able to get your symptoms controlled soon. I just wanted to add to what Morgan said--I agree that a psychologist or psychiatrist can be a great advocate for us. The psychiatrist I was bullied into seeing by my general practitioner wrote back to him that I had no mental disorder, but an undiagnosed physical problem. This validation can be very helpful when we are dismissed by our medical doctors as mental patients with no significant problem. Katherine

Calypso I know how scary those "panic attacks" are and how out of control it makes you feel. I'm sure it was that much worse to have no one around but your baby when it happened. I had the absolute worst panic attacks of my life post partum. I know when they were happening I really thought they were going to kill me, my heart would pound so fast and I felt so horrible--also felt like I couldn't breathe. I know what you mean about wanting to find a way to control the symptoms without drugs. Well, for one thing, probably your symptoms are at an all time high now, post partum, and are going to get better. Just keep reminding yourself of that--it really helps, I think. I went to a psychologist who did biofeedback with me (covered by my insurance!). It helped me to manage anxiety and panic attacks at least at a mental level which had a physical effect as well. That said, a small dose of SSRI really helped too. But correct, most doctors would advise not breastfeeding while taking one--and from what I've read, I would be uncomfortable taking that risk. Thinking of you--I know how hard it is--I've just come from there. Katherine

My face definitely puffed up during the time my POTS was most intense, but not in response to any particular activity. I thought perhaps this was due to increased cortisol production? Interesting what your doctor said may be the explanation.