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Users comments and reviews on article Postural Orthostatic Tachycardia Syndrome (POTS) by SirGan

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I hadn't heard anything about POTS but it sounds like a miserable disease to have unfortunately because it looks like a lot of things exacerbate it and not many people can do something to fix it. I hope that if anyone out there has it that they can enlighten me a bit on the syndrome? I hope that it's something you're able to cope with because it does sound like it would be difficult at times. Please let me know if anyone does!
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Bluedog I have pots syndrome have just recently been diagnosed after the birth of my first child. Been finding it very difficult to cope with every day life especially dealing with a baby.
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Hi there, I'm sorry to hear that you're suffering from POTS. I am glad that you posted that you have it and I'd appreciate hearing anything or any insight you have to offer about it. Thank you again for letting me know and I look forward to hearing whatever you have to say about it. :)
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Hey, I just got diagnosed aswell, after 8 years of torture. Yea its not a fun disease but im happy to know what it is now.
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Hi, I have been diagnosed with Pots for about 2years now - and I agree it is nice to finally know whats wrong with you. In the last year I have been able to lead a generally normal life and hold down a job. However i'm going through a really tough time at the moment with blood pooling in my legs that is making them very restless and heavy and has now started in my arms where I my limbs feel really heavy and jittery and unrelaxed. Any help???
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I am a lucky lady.... I have three girls that all have POTS. It all started about 10 years ago and we struggle with it daily. I consider myself luck because it could always be worse even when things are really bad.
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I’m 20 years old and I’ve been a pots sufferer for 3 years, but have only recently been diagnosed. I look normal, I mainly act normal, but I don’t feel normal. For 3 years it was the opinion of friends, family members and countless specialists that my symptoms were fabricated as a method of gaining sympathy and attention. I don’t think anyone can understand how you feel unless you have the syndrome. I’m yet to find the words to describe it. I think what frustrates me the most is that I’m in my prime, but I don’t have the mental or physical energy to take control over my life. If you feel weak for long enough you start to believe that’s what you are. To other pots sufferers; take refuge in the thought that you are not alone, that most people find a balance in the end. This syndrome is a relatively new discovery and medical knowledge will expand with time. I find that a rhythm of tasks that I can handle in my pots state, acts as my rock for sanity- if I have some control over what I do in the short-term- I seem to forget that I have little control overall. May you find your balance
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I'm 18 years old and recently diagnosed with POTS. It's really aggravating because I get tired out and miserable just walking around the mall. My feet swell & I black out all the time. I go through stages thought. Sometimes I have almost no symptoms & then it's back.
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I have had POTS for over 38 years - since I was 9 yrs. old. I never knew what was wrong until my daughter was diagnosed; I put up with both doctors and friends/family saying it was all in my head and was relieved to finally have an "official" diagnosis just two years ago. My daughter's case is so severe she is disabled. (Her symptoms began at age 13 and rapidly became so severe she would be dizzy even in her sleep; she has had it now for over 10 yrs.) Most cases of POTS (80%) resolve themselves, but since ours is genetic and I've had it so long, it's clearly not going anywhere. Exercise is essential but in severe cases can be so difficult to manage. My daughter tries to maintain a series of physical therapy exercises - LYING DOWN. A recumbent exercise bike can provide the vital aerobic exercise. Mari Winsor's Pilates is a good series of mild exercises that is also helpful, especially since it's all done on the floor. Currently, my most difficult symptom is muscle spasms (head to toe, including my vocal chords). I find the advice to drink coffee startling since caffeine is a cardiac stimulant. I'm going to have to check with the doctors on that one...
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I am a 37 year old woman and was diagnosed with POTS after a long battle with many doctors who had no idea what was wrong. My symptoms were so bad, I spent a month in the hospital. When I got out of the hospital, with no help from the doctors, I was so sick, I lay like a mummy in bed, all day, every day. The pain, dizziness, frustration, headaches, and "brain fog" were so bad, I actually begged my boyfriend to kill me! Luckily, he kept looking and calling doctors until we found one we thought might help. I told my boyfriend, "this is the last doctor, I can't do this anymore." Fortunately, this doctor, Dr. Jeff Goodman at Cedars Sinai, knew exactly what was wrong, and told me I have POTS. He prescribed a medication called Toprol. I've been taking the medication for 2 weeks and feel 100 times better! I no longer feel my heart collapse in on itself, I gain more energy every week, and can even stand up and walk on my own! Toprol is a beta-blocker and has worked wonders! I was also told to increase my salt intake, drink lots of fluids and cut out caffeine. I'm including some additional links that I found helpful! It is still hard, I got POTS from a spinal cord injury, but I feel much better than I have in a long time! I hope this helps! Wishing you all better health!


***edited by moderator*** web addresses not allowed
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I am 24 years old and have been affected with POTS symptoms since I was about ten. I wasn't tested properly then and encouraged to take Iron supplements. Basically, I had exercise intollerance and muscle cramps, which was always boiled down to "fatigue, low iron, and laziness/being unfit." It would affect me even when I was doing musical theatre, when I would be at my fittest. I would never faint, just "brown out," lose my vision but retain consciousness. Or I'd struggle to breathe (but not asthma, which I also get), feel heavy, or feel like my body would collapse under me if I didn't sit down. I would often also turn very pale. I'd start to shake, feel like there was molten metal under my skin, find it incredibly difficult to concentrate or remember what had just been said to me. I also really don't take heat well, and I sweat a lot. A wet paper towel on the back of my neck or on my face can be a godsend :-)

There are a whole host of symptoms, but the single common symptom is a sustained increase in heart rate of at least 30bpm from lying to standing, within 5-20 minutes, depending on the diagnostician. The blood pressure drop that many associate with POTS is Neurally Mediated Hypotension (NMH). I don't get this, so I hardly ever faint. I just make sure to always keep my blood pressure high enough by increasing salt and water intake. Magnesium supplements help. I eat slowly and try never to over-eat, and don't get up and do anything energetic after eating. I also reactivley have caffiene, although I remember a time when I'd have one cup of coffee per day, and that seemed to really help. I try to walk as often as I can, and do yoga and stretches. No aerobic exercise: all strength or flexbility, although I even have to be careful then. It seems to be all trial and error, doesn't it? And then some things seem to help... but then suddenly, they don't!

I am playing with a few ideas as to what exactly is going on in my body, and I'm mostly curious as to when most people started getting symptoms. I know one lady already has mentioned post-pregnancy. What about everyone else? I could trace mine to appendicitus, pneumonia, or puberty. Any comments?
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Hello! I have had pots for about 5 years. They diagnosed B-12 deficiency, Celiac & pots in '07. I agree with past posts.... so great to get a diagnosis after years of doctors telling my I'm just depressed. I don't think I would have ever been diagnosed except a new neurologist came to town (small town) from Mayo Clinic & Harvard. I kept thinking she didn't belong here, she was too good, and sure enough, 6 months later she went to Vanderbilt Univ. in Nashville, TN to work in the POTS department. (Her name is Dr. Cherdek, she is awesome!) She was just hanging out here waiting for her position to open up. It was a God thing to me!

I appreciate the post about biking while laying down! Awesome idea. Swimming is a good for me. In the water I feel normal.

Things that I've found help:

* licking salt and drinking water, (I use sea salt, more minerals/less additives).
* Sleep is a BIG issue. When I started going to bed at 10pm and sleeping 8-10 hrs, it made a huge difference in my day.
* I got fitted for compression stockings. They help keep my BP up so I can function. I can't wear them all day, but they help for my most important part of the day (tip, wear rubber kitchen gloves to help put them on, nurse taught me that). I also wear support panty hose under the knee high compression stockings.
* Sometimes cold water splashed on my face helps when heart is racing.
* I stay away from stimulants. Caffeine, Decongestants & Antihistamines etc. I avoid eating much sugar because it makes adrenaline drop to bring down the blood sugar level and affects heart rate.
* I don't eat big meals either, makes things worse, I do best eating more little meals all day.
* Can't do heat, no hot tubs, working outside in hot weather, etc. (my yard looks awful since diagnosis, can't bend over to pick weeds, etc.
* One way I cope is to try to keep moving, if I stand in one place too long I'm gonners, so I shift my weight back and forth from right to left leg, or keep walking & moving this helps me function.
* I have a little wooden (elementary age) childs chair I take with me around the house as I work, I can sit on it to do things down at low levels without bending over or if I get dizzy I can sit down. I also stand on it to do high things.
• If I get in a situation (I do concerts for a living) where I'm feeling bad and I HAVE TO KEEP GOING, I keep salt & small can's of V8 juice (organic is better no MSG) with me. Seems to really help for some reason!

Wish you all well, maybe something in this post can help! : - )
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Hi I am 22 year old female. I was diagnosed with POTS over a year ago after living with 5 years of tachycardia. At first it was almost impossible to stand at all without fainting. After months of trial and error with beta blockers I am finally able to live my life somewhat normally. I still have a really hard time doing almost any exercise. Another hard thing to cope with is that fact that many people who do not understand POTS attribute your illness as laziness or being a hypochondriac. Its really hard when there is so little out there about this syndrome, but in the past year info has increased dramatically. I do have a worry though...if I am this bad pre pregnancy what will happen when I start trying to get pregnant. Should I even have kids if my condition has the potential to be so much worse?
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i was recently diagnosed. It was a long road to diagnosis with many lengthy stays in the cardiac unit. While I am relieved to finally have a diagnosis, and know that I am NOT crazy, I am finding it overwhelming emotionally on somedays. I am a mother of a 5 year old and 2 year old and it breaks my heart daily when I can't do simple things like run aroud in the yard or go to the zoo like we used to. SOmedays I feel super normal, and then will have days on end where I can barely walk down the hall in my house. I am so afraid that I will never be better than this and my beautiful babies will grow up with me missing many activities. I refuse to let this syndrome win, I am gonna fight it with all i have, but there are so few resources and even qualified physicians. Does any one else have such extreme swings physically??? Even in one day I can go from feeling fab, to lying on the floor hoping the room will stop spinning. My heart rate stays at about 140 on standing and it wears me out. 2 years ago i was training for a 5k and now I can't dot the walk to my mailbox...
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