MomtoGiuliana

morgan I am so very sorry to read what you are facing with your friend and your family. This is a lot for one person to manage, who is not facing their own challenges as well. It is so hard too to know you have no control over circumstances. But, that knowledge can also be comforting. I don't know if it would help you, but a book I really like and come back to again and again in times of difficulty is *When Things Fall Apart* by Pema Chodren. She's a Buddhist nun. Another book I go to again and again is *Wherever you go, There you Are* by Jon Kabat-Zinn. These books just help me to clarify my thoughts about my situation and help me accept the things I can't change, while striving to live as consciously and lovingly as possible. It is encouraging to see that you have not lost your sense of humor. That's the first thing that goes for me when I am in crisis, and it's a wonderful gift to have. Please let us know how things are going. You're in my thoughts. Katherine

This topic has been discussed many many times on this site. I did a search and it took awhile to remember in which thread I had posted this. But anyway, here it is, in case it is useful! I found this on this website--this looks like a good list http://www.barttersite.com/potassium_page.htm I think the #s presented are mgs. It is interesting that there are several fruits and veggies actually much higher in potassium than bananas. FOODS THAT ARE RICH IN POTASSIUM Kellog's All Bran 532 Dried Apricots 454 Pinto Beans 531 Baked Potato 593 Orange Juice 479 Nabisco 100% Bran 354 Cantaloupe 412 Kidney Beans 452 Baked Winter Squash 590 Grapefruit Juice 360 Bran Flakes 251 Prunes 353 Lentils 374 Baked Sweet Potato 528 Tomato Juice 552 Shredded Wheat 155 Banana 338 Black Beans 309 Spinach 440 Tomato Sauce 459 Raisins 225 (3tbs) Avocado 510 Canned Beans 332 Peas 296 Blackstrap Molasses 1218 (2tbs)

I would agree with morgan. All I ever had was the TTT. I never went on for more detailed testing to determine what kind of POTS or autonomic dysfunction I have. Regardless of the results of these tests, the treatments are essentially the same, and all you are doing is treating symptoms. I am not discouraging anyone from doing more testing, if it gives them peace of mind, or if they want to contribute to research, certainly! Unfortunately knowledge has not progressed to the point that there is a specific medication for a specific "kind" of POTS, nor have probably all classes of POTS been identified and defined at this point. One thing my specialist found helpful was that when my symptoms were very bad, I kept a log of them and also my bp and hr sitting and standing in the AM and PM. That kind of information can help determine what meds might be useful. If you are young (child - age 55) and female, it is far more likely that you have primary POTS or POTS caused by EDS than any kind of degenerative disease. Katherine

I would agree with morgan. All I ever had was the TTT. I never went on for more detailed testing to determine what kind of POTS or autonomic dysfunction I have. Regardless of the results of these tests, the treatments are essentially the same, and all you are doing is treating symptoms. I am not discouraging anyone from doing more testing, if it gives them peace of mind, or if they want to contribute to research, certainly! Unfortunately knowledge has not progressed to the point that there is a specific medication for a specific "kind" of POTS, nor have probably all classes of POTS been identified and defined at this point. One thing my specialist found helpful was that when my symptoms were very bad, I kept a log of them and also my bp and hr sitting and standing in the AM and PM. That kind of information can help determine what meds might be useful. If you are young (child - age 55) and female, it is far more likely that you have primary POTS or POTS caused by EDS than any kind of degenerative disease. Katherine

Hope you can get some lengthy, restorative rest this weekend. I know I feel a lot worse if I don't get at least 7 hours of sleep a night. Take care, Katherine

An electrophysiologist is a cardiologist with specialty in the electrical function of the heart. They are often knowledgable about POTS. My electrophysiologist has particular expertise in autonomic dysfunction and studied and cared for POTS patients for years at Johns Hopkins. When my sister who was living in Georgia began to develop symptoms I asked him for advice and he gave me the names of two electrophysiologists in her area. She saw one and was quickly diagnosed with POTS and began treatment. Obviously some are going to know more about the condition than others, but most should be much more knowledgable than a general practitioner or another kind of cardiologist. Hope she can see someone who can help soon. If you want to tell us generally where you live, someone on here might be able to recommend their physician to you. Katherine

Have you looked at the list of specialists on this site to see if any of them are close by? Would you consider trying a run-of-the-mill (so to speak) electrophysiologist in your area? Generally they are the most knowledgeable specialist when it come to POTS. You might not have to wait too long to get in to see one. Katherine

I can't imagine your pain and all the other feelings you have right now. Let yourself grieve and have those feelings. All I can say is that I am so sorry that you are faced with such devastating sadness. You will be in my thoughts and prayers. Katherine

Welcome, Monica. I don't think you are irresposible to be in the process of adopting. It is very reasonable to be planning to go ahead with your life. POTS is not life-threatening and many of us are parents, and also choose to become parents after diagnosis. POTS can be life-altering. However, it can also get better over time or can be greatly improved by lifestyle modifications and medications. Regarding your question about your worst symptoms: chest wall and arm pain is a common complaint; I also have had that. It is good to have the tests, even for peace of mind, to make sure that the problem is limited to POTS. I am not sure what causes the pain--it has to do with benign chemical imbalances, possibly. Also some chest pain may be caused by GI spasms. It is not caused by anxiety, even though anxiety is another frequent complaint of POTS patients. Tachycardia is defined as bpm over 100. If your bpm is less than that it is not technically tachycardia. However, every body is different in how they manifest this condition. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing, by definition. Ringing in the ears is another reported symptom of POTS. Vanderbilt U has a long list of symptoms associated with POTS. This should be easily available--someone can probably direct you to it--if I find it I'll let you know. Regarding your question about remedies: palpitations--some days I just have to ride these out. Nothing helps stop them. Some days a low dose beta blocker is very helpful. Often I find they settle down if I dramatically increase fluid and salt intake. Just keep in mind that if you have been evaluated by a cardiologist and have been told these palps are benign, you don't have to worry about them being life or health-threatening. Compression hose: by reducing pooling in the legs, compression hose should help regulate bp and thus tachycardia. I have never found a dramatic change in symptoms from wearing them, but other patients find a good deal of benefit. Raised head when sleeping -- reduces dehydration during sleep, I believe. This is how it was explained to me some time ago. Flights: Lowered oxygen and the dry air can aggravate symptoms. I was afraid to fly after diagnosis, but I have flown four times and have not had any significant problems. I just kept well-hydrated, and tried to move around as much as possible to reduce blood pooling. As for increasing salt and drinking Gatorade -- You will have to find what works best for you. And this may change over time or from one day to another. I took salt tablets for quite awhile b/c I didn't like the taste of so much salt. After awhile I improved to the point that just adding a reasonable amount of salt to every meal is all I need. I personally don't like Gatorade, so I often drink watered-down fruit juices mixed with a bit of salt. Again, I think you have to experiment and see what makes you feel better and what your personal preferences are. When I was first diagnosed my electrophysiologist told me to aim to drink 3 liters of fluid a day! I probably drink 1-2 now. He emphasized this over any other remedy. I know it is a lot of new information to take in. Try not to overwhelm yourself! As I think others have advised on many issues related to POTS, take the approach of the tortoise rather than the hare! Take care. Katherine

Both recognized forms of primary POTS are generally treated the same way at this point--salt, fluids, compression hose, exercise, beta blockers, florinef, SSRI, Xanax, etc., until the doctor and patient find an acceptable and effective treatment regime. The hyperadrenergic form may be more likely to cause high blood pressure, anxiety symptoms and migraine/migraine-like headaches, than the partial dysautonomia, so meds to address these problems are more likely to be effective in providing relief. Katherine

Amy So far, so good. I tried this once before with poor results and went back on both. I have been off for over 2 months now. I still have days where I think my bp is highly variable and I get symptomatic, but I keep the fluids and salt going and it helps tremendously. I intend to use the BB still on an as needed basis, but haven't used it either for over 2 months. Thanks for asking. It does feel good psychologically to be off medications, that's for sure. My physical symptoms are only a little worse without them. Katherine

Of course you have a lot of questions. This is an article about POTS in diabetic patients, that I came across when doing some research several weeks ago. I had put the link in another discussion as well, but here it is for you too. http://care.diabetesjournals.org/cgi/content/full/26/7/2174 Take care.

Cordelia--welcome, glad you found us. Sorry that you are dealing with these life-altering conditions. I agree that there can be a fine line regarding managing vs becoming your condition--I understand completely. But, it is great to have a helpful group of understanding people, experiencing much what you are, at hand, when you need support and understanding or have questions. I think you will find this is a special group of people here and there is a wealth of collective knowledge at your fingertips here at DINET. Katherine PS I LOVE your first name

I believe veryblue/thisblows/porque conducted a number of surveys on this matter that you can probably find by doing a search. I think I started to develop POTS in my early 20's. It was full-blown with my pregnancy, got worse post-partum. Following diagnosis and treatment, I improved tremendously by a year later. I am much better now and currently off all POTS meds. Still keep up fluids and salt, and still have some off days, but overall, highly functional. Katherine

beta-blockers are actually very safe medications, and many POTS patients use them. They are actually prescribed for a variety of ailments, including reducing heart attack risk in patients who have had a heart attack. The problem they can cause for POTS patients is a drop in blood pressure that can cause fainting, fatigue, etc. That is why many can't tolerate them except in very low doses. Merrill makes a good point and many POTS patients experience such a wide variety of symptoms--including chest pains and other sensations that feel like the heart is severely malfunctioning, when it is actually responding normally. I think I have seen on this board in the past, that some people experienced more intense POTS symptoms on a bb than off of one. When I first started on a beta blocker my bp was all over the place--usually higher than normal, but I also had dips. I had episodes in the first weeks of being on the beta blocker where I nearly fainted, or had prolonged episodes of feeling slightly light-headed. Eventually, my bp evened out as I started to improve, and I tolerated the bb much better, and found it helpful for managing otherwise uncomfortable tachycardia. There was a study recently that found that POTS patients with mast cell involvement tend to have trouble tolerating beta blockers. But, even POTS patients without this involvement can also have trouble tolerating them, according to the research. Katherine

Linda I have an article, just published, on this I can send you. I think you gave me your e-mail address before, perhaps? But in any case, just to make sure I have the right person--send me a personal msg with your e-mail address and I will send the article to you. Also, see this link: http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2046 Hope this helps. Katherine

Jenn--the SSRI my doctor prescribed was Prozac. I took 20 mg/day. (I think I was given Prozac b/c it is one of the safer ones to use when breast-feeding. However, my daughter's pediatrician felt I should not use any SSRI while breastfeeding, so in desperation to get better, I weaned her.) I don't think it helped me retain sodium per se. I think what it did was help regulate my ANS, which in turn relieved the electrolyte-loss problem caused by blood pooling in my abdomen. This is my understanding of how it works. My doctor told me that about 50% of POTS patients see significant improvement with a low dose SSRI, so it is worth giving it a chance! Katherine

I took a low dose SSRI for about 18 months. I am in my second attempt now to wean off it. I had exactly the same experience as avais1. I had a HORRIBLE adjustment period during which I was practically bedridden (it took all of my energy just to get out of bed several times a day some days) and had awful anxiety (Xanax really helped with that). After eight weeks, slowly saw improvement in my symptoms. Eventually, HUGE improvement in my symptoms. Although there were probably other factors in my dramatic recovery, I believe the SSRI played a large role. SSRIs are considered very safe for adults. It is worth the try, and even worth the bad side effects you may experience while adjusting to it. There are many SSRIs. If one really doesn't seem to work, it may be worth trying a different one. Katherine

persephone--that's great--keep it up. Exercise is KEY to recovery, I believe. I am amazed by how quickly you recovered from your last bout. It took me months to go from being chairbound to walking as much as 1 km at a time. Hope you keep seeing such improvements! Katherine

Hi Jenn Yes I also thought it was very odd to have high bp and low sodium at the same time. I also used to produce a lot of urine like you describe. The times that my sodium was low I definitely felt really weak, weird and horrible--almost like I wasn't even in my own body. What helped me eventually, I believe, was a combination of TIME (months and months), a low dose SSRI, a low dose beta blocker, lots of fluids and salt, and SLOWLY stepped up exercise. I also used Xanax to get me through the really rough patches, particuarly when I started the SSRI, which made many symptoms even worse for several weeks. My specialist really pushed me to exercise. He said, I know it seems like you can't do it and feels awful, but start slowly and move slowly and little by little you will see improvements. He particularly recommended floor exercises and any exercise that would strengthen my calves. I never had PT. Eventually I was walking every day and still do and I think walking, for me, really helps in regulating my ANS. I still have minor symptoms, but I am again medication free (at least for now--I have weaned off my SSRI--this is my second attempt to do so and I have been off it for almost 2 months. I still take a beta blocker once in awhile, but I haven't taken one for at least two months either). I do keep the fluids and salt going, and I keep trying to improve my exercise tolerance. I haven't had my electolyte levels measured at any point for the past year and a half, but I haven't had any symptoms bad enough to warrant a work-up. I hope you find some things that help improve your symptoms soon. Take Care, Katherine

This is a common problem for POTS patients. When my POTS was very severe I had episodes of low sodium. The only thing that helped was IV fluid and taking A LOT of salt. Hopefully this is not a permanent problem for you--most likely it won't be and you will recover to better function eventually. I also had high bp along with the low sodium, btw. What meds are you on? Katherine

Danelle I have had days like that again and again, and yet, each time it happens it's like it is the first time. I know it is scary. The only thing that helps me is to rest and drink fluids and eat more salt and eat lightly. It might help to call your doctor just to get some reassurance. I have done that twice--called and talked to my specialist's nurse, who is so understanding--and it does help to allay those fears. If there is anything you can do to take your mind off of it, try to do that too. I agree with calypso about getting outdoors. That usually helps me too--unless the weather is bad. As long as you are not experiencing any new symptoms, you really shouldn't be concerned. This is a common POTS experience. Take care, Katherine

corina I am glad you have this new hope. I hope this specialist can help you. I'll be thinking of you on April 12th. What is this 6-month re-hab exactly? How do your doctors think this would help? Hopefully this new specialist can advise on this. Katherine

I could never tolerate any birth control pill. Haven't gone to great lengths to find one that works for me and haven't needed one for health reasons, so I just don't use one -- and use alternate forms of birth control. Katherine

I'm so sorry for your recent loss of your father. I'm not aware of any research that answers this question. Unfortunately there are a lot of unknowns about this condition--particuarly regarding long-term implications. At this point, according to my POTS specialist, there is no reason to believe that POTS brings on any life-threatening events (other than possibly fainting or falling and associated head injury). Of course, some of us do have problems with high blood pressure. As we know, there are long-term health implications associated with high blood pressure. Hopefully some day there will be more definitive answers to questions like yours. One question--is an aortic aneurysm related to a heart valve problem? Or did you say valve when you meant vessel? Katherine