Tips For Living With POTS

These are lifestyle tips I’ve found work for me and or other people I know with POTS.  Obviously be sure to check with your doctor before starting anything new.  This page will be added to as time passes, and please share any and all tips you have!

1. Water!  People suffering with POTS should have on average 3L of water a day.  If you get sick of it, there’s always Crystal Light flavor packages that give it a change

2. Depending on the type of POTS you have, your doctor will likely recommend you up your salt intake.  It’s done to help raise your blood pressure.  Adding salt even to you water is popular, and you get used to it with time.  When  cooking, try to keep it to healthy meals with salt, not chips, etc.

3.  Use a Bed Wedge.  There’s debate on this big time.  I know people who use a wedge to help raise both legs and head, but also heard that you’re only to raise your head, or tilt the entire body on a slant head up to help stave off the blood from pooling in the legs.  I also like it raised behind my upper body when my blood pressure is low (mine lowers when I lay down, which isn’t the norm) It allows me to rest, but still hold myself up a bit.

4.  Use a shower stool.  I am no longer able to stand in the shower, and the chair I have for in the tub is amazing.

5.  Don’t bathe in excessively hot water.  Whether it’s a shower or a bath.  It exasperates the symptoms, for me making me really dizzy, light headed, weak and sick to my stomach.

6.  Use a stool in the kitchen.  This can be a real help when doing dishes (yet again not too hot of water!) and when preparing meals.  Bar stools can actually cause the blood to pool in the legs as well and it does do this to me, but it happens over a longer period of time, instead of instantly with standing still.  Best bet is to get a stool you can put your legs up with.

7.  Lay on your right side.  This helps with the chest pain that comes with POTS.  It also helps with breathing.  Try if you lay on your side to lay away from your heart by laying on the right side.  It does surprisingly help!

8.  Limit your intake of junky foods!  Sugar is horrible for POTS as well as caffeine!  A lot of us have gastrointestinal issues as well, and non of these bad foods help either!  Try avoiding prepackaged foods, like frozen meals, and foods that are harder to digest like red meat, and surprisingly garlic.  It directs the blood flow to the digestive system, and can make you really weak and lethargic.

9.  Exercise!  I know this seems impossible, but start out at what you can do, no matter how small and slowly build yourself up.  It helps build orthostatic tolerance, aids in digestion, helps you sleep, deal with the stress of being chronically ill, keep the weight on and off!  As well promotes proper blood flow.  As well as the many other amazing benefits to staying in shape!

I was nervous about working out after being so sick and not knowing what may make me worst.  Talk to your doctor about seeing a physical therapist who can help along with your doctor a routine that works specifically to your needs and symptoms.

10.  Grieve!  It is so great to stay positive but lets face it… we have a chronic illness and it sucks!  Everyone needs those days where you sit around feeling sorry for yourself.  Cry if you need, call a close friend and vent… write in a blog like me :p It helps to release the stress when you get upset, or you can make yourself feel even worst.  Pent up stress is bad for everyone especially us!

11.   Carry a list of your medicines even vitamins in your wallet or purse and an explanation for what each of them are for.  It’s great for doctor visits bc we have brain fog and are likely to forget the names or dosages of them all.  It also a life saver in an emergency case for paramedics to know what you’re taking and also what you’re allergic too.  Medical Alert bracelets and necklaces are great for this.  There are many new and cool looking ones out now too to choose from.

12.  When dealing with nausea, try ginger candies!  They’re great tasting, fast acting and fit easily in your purse.  If you’re unable to find them in a store near you, try amazon.ca .  Gin Gin candies seem to be the best.

13.  I hate going through the hot flashes.  They make it hard to sleep, concentrate… and they’re just plain annoying!  For this, I use a wet, cold face cloth and drape it over my forehead or even stomach.  If it’s low blood pressure causing you to be hot, run your wrists under the tap with cold water.  Sounds weird, but it works!

14.  For muscle and joint pain, try a nice relaxing bath.  A lot of potsies cannot take baths, so what I did, was pick up a three pack of hot oatmeal bags.  You can find them in any drug store or super store, for around $15-$20.  You pop them in the microwave for two minutes and then place them wherever the pain is.  Great for relaxing muscles and indigestion.  Also a good thing for headaches.  They normally come with three in a package all different sizes.  I take the smallest one and leave it in the freezer to use with pain, the hot flashes and as a good relaxer.  It as well can help raise blood pressure.

12.  Another quick nice way to raise blood pressure is to chug cold water!  It automatically starts to raise it for you!

13.  Take a multivitamin.  Obviously consult your doctor and pharmacist first, to make sure none of the vitamins won’t give you an adverse reaction with any other medicine you’re on.  I suggest you also speak with a dietitian and see what is lacking in your diet.  I take a multivitamin with all the B vitamins, B12, C, D, Calcium, Potassium, etc.  As well as on the side extra Magnesium which 90% of all people (not just potsies) are low in.  And make sure when taking Calcium you are not taking over 1000mg or else it will deplete your Magnesium levels even more.  Ask your doctor to do blood work to see what else you may be lacking in and do your research of what vitamins your body needs most.

14.  Where would we be without our pets?  My man Zeus is my angel.  I can feel and look right awful and he’s happy to snuggle and love me.  I personally am unable to own a dog bc I cannot get them out for walks, so my cat is the perfect choice to me.  I have someone loving to take care of, without it jeopardizing my illness.  The Humane Society always has loving pets that need homes.  If you want a dog, but are not well enough to train them, try adopting an adult dog!

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63 thoughts on “Tips For Living With POTS

  1. I also have POTS and am trying to get some online support going for myself and others with this disorder please check out livingwithpots.com and offer your support.

  2. I was just diagnosed with POTS syndrome today and ran across your blog in my frantic google search of trying to fig out what the heck it is. Thank you for all your tips and advice. I am 23 and have been out of work, school & pretty much reality for the last year trying to figure out my health problems. I am relieved to have some sort or direction, but being that it is a chronic illness it is frustrating. Thank you for lifting my spirits and giving me some hope that I can continue living life as close to normal as possible.
    p.s. i have a little pup TigerLilly & she is my best medicine too =)

    • Aww Lauren I’m so sorry you have to deal with this crap! It can be very frustrating to deal with, and to try to constantly get other people to understand it and how badly it makes you feel. If you’re on facebook, there are a TON of groups too that are great if you have any questions and to meet and chat with other people when we’re feeling down, need to vent, or just laugh and be silly! I’m Ash Pauls on there too if you want to add me and ask any questions or whatever. *big giant hugs* PS Tiger Lilly is such a great name!!!

  3. I really love this blog! 🙂
    I was diagnosed with POTS about a year ago, and just finding out that I do have something wrong with me was a relief.
    All my life I had stomach pains and was constantly depressed, my parents thought I was a hypochondriac for everything I was complaining about day to day. I can’t begin to tell you how much blood they have taken out of me, or how many different test we have done.

    I am doing a research paper on this and presenting it at my school in North Carolina, its amazing how many doctors know so little about this!
    I am creating informational pamphlets and I am going to distribute them. 🙂
    Any Ideas? Shoot me an email 🙂

    • Aww thank you! I think a LOT of people have a hard time getting any real respect from doctors bc it doesn’t really show up as anything in normal test results. It took me about 6 or 7 years to be diagnosed, and I had shown symptoms earlier in life too. I have Crohn’s Disease, so my family doctor just kept using it as an excuse. We know our bodies and when something isn’t right! Doesn’t mean we’re hypochondriacs, it just means we refuse to lie down and take it! It’s awesome to hear when people want to spread awareness! It’s been getting far too common these past couple of years it seems, for people not to know by now what it is. It’s sad and no excuse! Definitely keep me updated on how you’re doing!!! Take Care!

    • Wow this makes me so happy I just stumbled upon this and I’m in the process of being confirmed with pots. All my life I’ve had passing out spells and pretty much every symptom but no one linked them and now it all makes sense. It’s super scary to me but I’m glad they’ve finally figured it out it gives me so much relief I’m so glad there are more people out there like me.

  4. I just wanted to say a big thanks for your work on this blog. It is helping me enormously to try to get and stay positive. I a still in the process of trying to get a diagnosis and to get my doctors to take me seriously but have a tilt table test coming up this Thursday and a neurologists appointment coming up soon so here’s hoping.
    I’ve taken your advice and started my own blog in an effort to stay sane- and it is an effort with all of the symptoms I’m having!
    I’ve only written two posts so far because I feel so defeated emotionally and so scatterbrained but I’m hoping to add to it as I go and hopefully connect in with some other fellow sufferers.
    Thanks again- I love reading your posts and the feeling that I’m not alone.

    • Good luck with your tilt test!!!! And of course with the Neurologist appointment right after!!! Hopefully they get right on the ball of treating you bc it’s sickening enough waiting to be diagnosed! Sometimes it is tiring to write, but good on those bad days when your stressed and feeling like no one else gets it. Definitely check out facebook if you’re on it. It has TONS of POTS groups and it’s nice bc then you’ll get to rant, ask questions, etc. to a crazy amount of people going through the same thing. It helped me out tremendously to realize a lot of my little sick feelings were also related to POTS. Take care and good luck again!!!! *big hugs*

      • Thanks Ash, I got the diagnosis of POTS on Thursday without even doing the tilt table test. They did 5 supine bp measures followed by 5 standing ones and I had to blow into this tube connected to a pressure gauge til I thought my head would fall off then they asked me loads of questions, looked at all of my bendy joints and said you have POTS!
        I have to go back on Tuesday to see another specialist who apparently will want to see my weird knees and elbows and I’ll be asking about the sleep clinic as I’m having sleep apnoea too.
        Thanks for your support and I’ll definitely check out the FB groups you suggested. 🙂

      • Congrats!! Weird that they didn’t end up doing the tilt table test! But it all tells the same thing anyway! Do you know what that thing they had you blow into was for? Never heard of it. Sounds like they’re going to check you out for Elhers Danlos Syndrome

  5. hello, i was diagnosed in october and I haven’t been able to work since. I am a single parent and I am the only one with an income coming in. So along with the stress of not being able to work I have to deal with moneys issues. what bothers me is I can’t even find a neurologists here in my home town to see we. I have to travel. I do have a very good cardiologists which he is the one that diagnosed me with POTS. I am tired all the time sometimes I do feel like I can go to work but than I get up just to do the dishes and I can’t even finish. All i want is to go back to my career and be able to live a normal life again. Thanks for your suggestions, I will try some of them. It looks like this Blog might help me, at least to make me feel better about myself.

    • Aww I’m so sorry. It’s such a tiring, disabling condition! I found getting on a proper beta blocker to control my heart rate made a huge difference, but it took a long time to get the right dose, with bad side effects at first. You should look on facebook if you are on there. There are TONS of POTS groups on there, and maybe someone could help you find a local Neuro, or even recommend a better Cardiologist. Sorry it took so long for me to write back, but as we all know, sometimes POTS doesn’t allow for much. *hugs*

      • Firstly, I wanted to say that I loved your post – I’ve been living (and struggling) with POTS for a couple of years, and I think some of your tips sound really helpful – I’m going to try them. Secondly, I was very interested by your comment on the beta blocker. At one point I really wanted to go onto a beta blocker, but I was told that I wouldn’t be able to manage it because of my low blood pressure. Did you find that the negative side effects outweighed the positives, or was it worth it?

      • Well… my blood pressure was actually high, so it was okay for me to be on a beta blocker. If yours is too low to begin with, they definitely won’t want to make it lower by adding a medicine that effects it. There are other medicines I’ve seen potsy’s on, who couldn’t handle the beta blocker… ridalin (sp?), as an example. I’d ask for a Neurologist referral if your Cardiologist won’t help you.

  6. Thank you for sharing your story, and ways to cope. I was diagnosed a few weeks ago. At first my husband and I felt a sense of relief to know why I have been feeling so terrible…I have had symptoms for about 7 years and I am now 33 years old. Now my symptoms are so bad, especially the tachycardia, that it takes everything in me to get through work…and I’m only 26 hours. Have you heard of anyone else with POTS having issues even while sitting or laying down?? I have to actually lay down and sometimes sleep in order to get rid of it, or at least try to sleep through the discomfort and pain if I can. I can be sitting and go in and out of symptoms.
    Thank you again for sharing your story. Be well!

    • Aww welcome to the club girl! Unfortunately! Sadly, yes, it is very common to have symptoms lying down too. I think it’s partly bc we are so sensitive, but also bc any amount of standing, etc. wears us right out, even lying down doesn’t seem to totally get rid of the symptoms. Try lying on your right side (away from your heart) sometimes that helps with the chest pain. I’m sorry to hear you are a diagnosed potsy too, but now that you know what you have, the doctors can get a handle on getting you better! I went to a Neurologist as well, and had nerve tests done, to make sure there wasn’t something more in depth going on, to cause the blood pooling, etc. It’s common for there to be, but thankfully I didn’t. Just know, even though you’ve been dealing with this for years like I did, I learned a lot more on how to cope on the facebook groups. Just type in Dysautonomia or POTS, and a lot will come up. I find we get better tips from each other than the doctors! *hugs*

  7. These tips are very helpful! Like everyone who commented, I have POTS as well but not in as of an extreme case as yours (I can stand in the shower for instance) but it’s still a huge burden on life. How do you manage to stay afloat? I’m searching for work but being 20 years old in a small town not a lot of desk jobs are available. I recently had an interview for a gig as a casher but am unsure if standing 4-8 hours is gonna be easy. Do you have any tips for quickly ridding symptoms for this type of environment?
    Also, those hot flashes you mentioned, had no idea those were part of POTS. They are quite annoying haha.

    • I could NOT do a cashiers job. When my POTS wasn’t as bad, I was okay with jobs that required standing, as long as I could keep moving and not have to stand still. Maybe even a stock position in a store would be better. I always say, keep snacks, and water on hand, and try to stay as cooled down as possible!

  8. Hi, my name is Braelyn and I’m 18, I have had pots for 2 years now. It was very bad and very hard to deal with at first but gets better dont worry! But now I will go through stages of being fine to one month being sick again. My main problem is not being able to sleep. It sucks. But what has helped me a lot is taking over the counter salt tablets and drinking only Gatorade and Powerade. It’s not fun because I miss water but water makes me worse because it flushes the salt out of me. Exercise does help a lot I do Zumba because its fun.. I always feel my best after a large powerade from McDonald’s haha anyway I hope my pots goes away because it’s been difficult to live with but for everyone out there Stay positive! I’m way better then I was! From being in the hospital for 2 moths to now going to college:) please feel free to email me if I can help in any way:) braelyncheer1@gmail.com

    • thanx girl 🙂 the same goes for you! I have had POTS for around 10 yrs now, but showed signs when I was younger. My POTS for the most part is in remission now and I am slowly building my body back up to normal again. Hope you’re doing well!

  9. Just read this blog, I hope it’s still being used! I was diagnosed 3 days ago and haven’t been able to take it all in. I’m 26 and the symptoms came on suddenly a year ago and noe are debilitating. I’m working until August but not sure what I can do after that. I’m able to sit at the computer for a while but that gets exhausting. I’m hopeful that seeing my neurologist in August (wait time for an appointment) will be beneficial and help me live a somewhat normal life. Does anyone have advice on diet suggestions? I know salt and fluid is essential but snacks/meals I’m still clueless. My mom is able to grocery shop for me as I can no longer drive or go into big stores without getting dizzy and light headed. Any advice would help! I was toying with the idea of deleting Facebook because it made me more depressed to see the things I was missing out on – but if there are helpful pots groups I might reconsider.
    I hope someone can read this and if you do, thank you! Any support is a god send 🙂

    • The groups on facebook are AMAZING! Definitely stay on it, if not for knowledge and support! I was about your age when I got diagnosed… I think 24. I am disabled from it too. Thankfully you have family that can help though! I find a Cardiologist imperative, to get your heart rate under control, and a Neuro to do the tests to make sure it is happening from your nervous system, and not an actual problem with the veins, etc. For diet, I say stay away from anything that can make you more dehydrated… but some people, like me, are okay with a little (like coffee, pop, etc.) And as for meals, if you have low blood pressure, try eating salting snacks like pretzels, and pop corn where you add the salt yourself. Meal wise, I eat campbell’s soups a lot, and veggies (bc they have natural occuring sodium in them), and add even more salt to everything you eat… that you can stand anyways. Also gulping lots and lots of water like you said. Helps with blood volume, keeps you hydrated, and keeps your blood pressure up. My Neuro said first thing in the morning, drink as many glasses of water as you can chug… he said 6, but I can only do 3 lol.

    • Mollyprints I know this is two years old, and you might not see this reply, but I saw your comment about getting light headed in big stores and I get that too!!! I don’t know why, but it always happens to me. Do you have any theories on why that is?

  10. Hi there! I am a 35 year old wife and mother of 1. I was diagnosed almost 3 years ago w/ POTS. I recently stopped working as my episodes have gotten worse. Keep a positive outlook and do what you can when you can! Eat healthy and maybe keep a food diary to see if gluten or anything agitates your symptoms. Watermelon, peppers, and cucumbers are great to add to your diet as they have a high water content to help stay hydrated. Gatorade to be sure your getting those electrolytes. Orthostatic training…swimming has been a huge help for me, although at times I am too dizzy and nauseous to be in the pool. I always have an ice pack with me to put on my chest/neck as I get overheated and clammy, and although it doesn’t stop the episodes, it certainly helps to calm me.
    Surround yourself with positive people, and let them know what you’re dealing with so they understand. One day at a time…there are good days, days when you can tolerate episodes with rest, and days you can’t get out of bed. I know it’s easier said than done, but stay positive and work closely with your doctors.
    Let me know if you have any further questions or just need to vent. 🙂

    • GREAT tips! Thank you 🙂 That water foods is a great one! I too swim when I can, and find I get too hot too. Having something cool on hand is smart, bc sometimes just keeping from being overheated makes a huge overall difference! Props to you for being a new mom with POTS! It’s hard dealing with POTS in general let alone with a little one to look after!

  11. My name is Rachel and I’m 21. I was diagnosed with POTS a year ago after being hospitalized for 5 nights. My symptoms were horrendous for months. Fainting almost every day, hot flashes, chronic nausea, rapid heart rate. I felt like I was dying. Then I met my husband and I started getting better. I felt like a different person. Anyways in the last couple of months, my symptoms came back full swing. Maybe it’s the stress of family issues (my husbands mother is literally an evil witch… I’m serious) and the upcoming wedding (so much planning) but I am so scared and in pain. I’m not sleeping at night, fainting a couple times a week, having immense pain and weakness. Going up the stairs to my room seems like a journey. I’m eating more salt but I don’t really know what to do. I feel so alone. I feel awful that my husband is watching me suffer. If anyone can relate or has any advice or words of wisdom or kindness id love to hear from you. Love rachel

    • My symptoms are like that most days sadly. Now that I have my heart rate lowered with a Beta Blocker, I don’t faint as much, but still have all of the symptoms. I know quite a few people, especially women (maybe bc we carry the world with our hearts?) that find stress can send them right to bed from their pots symptoms. I know one girl who goes to a local college and gets massages done. Unfortunately there isn’t much I can say, except rest as much as possible with the craziness of the wedding coming up, and try to destress any way you know how!

  12. Hi Rachel. Congratulations on your upcoming wedding!!!! I am sorry you are having such a tough time! I am a 35 year old wife and mother, and was diagnosed 4 years ago w/ POTS. I recently stopped working due to this condition, after being w/ a company for 15 years.
    I ALWAYS have an ice pack w/ me, the cold on my neck or wrists helps at times. I swim as much as I can, orthostatic training, and the cool water is calming most times when I’m not super dizzy. When you are feeling an episode come on, feeling faint, lay down and close your eyes, breathe in for 4 and out for 4 and think about things you want to do….try not to think about the episode (I know it’s difficult but it can help). Gatorade, water, stay hydrated. Eat healthy, I eat a lot of peppers, watermelon, and cucumbers because of their high water content. Eat smaller meals throughout the day, I cannot eat 3 meals as it’s too much on my stomach.
    I have good days where my episodes come and go throughout, and bad days where I feel faint every time I get up. I stay positive and have people in my life that are encouraging. Don’t sweat the small stuff, if I am bothered by what someone does or says I calmly let them know. Sounds corny, but life is precious and I enjoy it as much as I can. It is difficult for me to go anywhere, the movies are a big ordeal for me. We mostly stay home, go in the pool, I LOVE to garden, and I LOVE to be w/ my husband who is my best friend. My daughter is 12 and is a sweet heart, and she helps around the house.
    I hope I’ve been able to help. If you have any other questions let me know!!!

    • Hi I was diagnosed in 2014 after feeling faint and could not stop using the bathroom and of course my heart rate going crazy when stand or walk. I was put on 25mg of lopressor, it was helping until recently.. I am now feeling horrible. I can not get out the bed,it’s hard taking showers..i feel nauseous all day. My stomach is tore up. Does anyone else have stomach issues?

      • It is common very much so. Our autonomic system is messed up (everything we do automatically, including digestion) nausea and stomach pain are common symptoms of pots, as well as having other conditions like IBS, etc. I have Crohn’s Disease

      • Almost every one I know has problems either with their bowls, or stomach, or with their urinary tract. Sometimes both. I think bc they are very sensitive nerve wise, and definitely are effected.

  13. I haven’t officially been diagnosed with POTS but my doc is almost certain that’s what’s going on with me. It came out of nowhere one morning at work on a day that I felt perfectly fine. I was hospitalized for a week while docs remained puzzled as to why my blood pressure just decided to go 180’s over 130’s all of the sudden, but only when I stood up and instantly. Later on once they got meds going to control my blood pressure my heart rate was jumping into the 100’s, even as night as 150 at one point. The chest pain is so unbearable at times and the headaches. I’m a nurse so I’m completely devastated about what this may mean for my career.. 😥 I can’t stand to walk for more than 45 minutes without feeling like I’m going to die, how can I walk for 12 hours or more for work?!

    • I’m so sorry to hear this. Despite being so exhausted, try as hard as you can to keep active, or you can become VERY deconditioned. My nurse gave me a tip for the chest pain… lay on your side AWAY from your heart…. your right side, and that takes the blood flow pressure off your heart. It’s not a 100% cure, but it helps when your chest feels like a pile of bricks on it.

  14. Hi im a 36 years old male dealing with pota for almost 1 year but the past month its been the worst. Im in bed 24 hours because i feel like im dying. The worst part for me is that doctor only want to treat the symptoms and dont want or care to find the cause of it. At first most of them told me that i was suffering from anxiety. Well what is the treadment that many of you are getting and how long did it took to see improvement in quality of life. Thank you

    • There is a page on here to help with daily living at home, but sadly, most doctors don’t know what to do for a “cure.” It seems to be they try to control the heart rate with a beta blocker, tell you to up your salt intake and drink lots of water. Not a lot of help huh? I was bed ridden for quite a long time, and when I got regulated on a beta blocker it did get better, but I was so deconditioned from not being able to do anything, that it’s been nearly impossible to get myself back to my “normal” sick self. I hope they can give you some answers and some help. Keep fighting and advocating for yourself with the doctors!

  15. I was diagnosed with POTS and vasovagal yesterday. My BP while sitting was 117/70. When I stood up it was 80/50. My heart rate was crazy because of the anxiety. He prescribed a beta blocker and fludrocortisone. I tested my BP and HR and its been low to normal. My HR hasn’t gome above 85 so why would the cardiologist want me on a beta blocker if my BP is low to begin with. Not to mentiony HR was only 59 this morning. It’s also suggested that I increase salt. How do I do that? do I just eat more kosher salt? Drink it?

    • Depends on you, and how much you will need (salt/sodium wise) to change your blood pressure. Veggies have a lot of natural salt, and so do soups and a lot of meats. Some people take salt tabs and eat them, and some add them to their water. I agree about it seeming pointless about lowering the blood pressure more, but they seem more worried about the heart rate being higher, even though it still spikes regardless.

  16. Hi
    Recently I’ve been looking up on the internet on others who have POTs,and i found this blog of yours to be very helpful, and comforting.
    To cut it short, my story goes back since May last year, I’ve been suffering with all the symptoms of POTs, gradually getting worse and more frequent over time. It came on suddenly at work,at first i thought it were just fainting, but soon realized it were different is so many ways. To be honest, if it weren’t for my godparent knowing a friend with the same symptoms as me, we would have been in limbo (since his friend has been diagnosed as POTs). It’s ruined my life literally, i can’t go out the house unless I’m in a wheelchair. Sometimes i get such bad episodes, that i can’t breathe from the chest pains and can take hours before i come round fully,not to mention the hot flushes and shoulder pains are a nightmare too.
    To this day I’m still fighting with the doctors on getting it diagnosed. According to them it’s all in my head and it’s acid reflux… of all things. One consultant went so far as to tell me ‘i don’t need help, there’s nothing we can do for you’. I’ve had to fight tooth and nail to have a tilt table test, to find it’s come back negative (i collapsed 2 minutes into the test), this has put a huge dampener on me, and now i have to pay private to see a POTs specialist (whom won’t see me because the test is negative, but would see me if i wave cash in his face). I’m at my wits end with this, and I’m glad in a way I’m not alone, i thought that i were, and i see lots of people are in the same boat,if not they have it worse in the length it’s took for them to get a diagnosis. Apart from going private i really don’t know what to do now, as i feel that no matter what i say it’s falling on deaf ears.If you could help me with any advice, such as how you went about getting a diagnosis etc i would be extremely grateful to you 🙂
    P.S One thing i do know about this, is that when i am better i will be running a charity event for POTs people, on getting this illness out there, to make doctors realize that its not just in peoples heads, or anxiety attacks..but thats its actually a very debilitating and traumatic long term illness.
    Much love
    Natalie

    • Are you in the US or or Canada? That makes a big difference with fighting for your health rights. I’m in Canada. I would say you are being treated poorly. If you failed the tilt table in their eyes, then what was it that made you pass out? Normally on a tilt, they are looking for your heart rate (depending on the doctor) to shoot around 20-30 beats per minute higher when going from a laying to standing position within the first few minutes. I know some potsy’s blood pressure will drop dramatically causing us to faint, but in the technical terms of diagnosing us, that’s not what they are looking for, bc a lot of people’s blood pressure will stay the same, or go higher.

      And I’ve heard countless time about the using anxiety as an excuse. It does affect our flight or fight part of our bodies, but we know the difference between that, and actual anxiety due to mental illness. It sounds the same explaining it, but it is NOT the same at all. I got that card thrown at me bc I am very honest about suffering from depression with an off shoot of anxiety, and could have slapped my Neuro for using that at me. I know what an anxiety attack is… and it is NOT the same. It is not debilitating for me at least. I have a best friend who couldn’t leave her house for years due to anxiety, and that is nothing like a POTS fight or flight symptom. I swear they just shoot at straws.

      If you are able, get a new cardiologist and neurologist who actually knows POTS and Dysautonomia well, and what it all entails. I find a lot of specialists see it as a heart rate thing. Once they get that under control they just give up. It’s not though, but getting the heart rate under control helps, it’s an autonomic nervous system problem. They also like to say we need to be built back up due to deconditioning.. which I agree, we get badly deconditioned… but we can’t get better if we’re still sick!

    • Sadly I can’t answer this. My Neuro recently told me that 85% of potsy’s are healed within the first 5 years. They grow out of it. Mind you I’ve had it off and on my whole life, and been disabled by it for the last 9 or so years. He says that is from decondtioning… which I agree we do get badly deconditioned, but I find doctors don’t look at pots as an autonomic nervous system problem (fight or flight part of our bodies, and all over the things we do automatically, like breathing, digesting, heart rate, etc.) they look at it as a heart rate issue, and once they figure that out, they kind of give up. I’m not going to stop fighting them though. I don’t expect to be 100%, but I will not settle for being disabled!

  17. Hey all – great page ash 🙂

    I am Corinne and I am 32 from Bondi Australia. I haven’t recently been diagnosed ,…. From a tilt table report the hospital lost in 2011 – you’ve got to love them!!

    I was initially really sick for about 6 months (episodes, hospital, bed, fear) and then was treated by an alternative GP for an I invasive fungal infection – miraculous recovery!

    Unfortunately I didn’t complete the antibiotics properly and returned to partying. I’ve the course of a year my symptoms slowly came back. Had a massive episode and then spent all of last year falling down the POTS rabbit hole again (with a lost/ inconclusive tilt table report we did another major pheo and carcinoid investigation)

    At the start of this year I just couldn’t get well.. I implemented my protocol and was still 8-10/10 potsy everyday. My stomach was torn apart and I was flaring hourly … Life was feeling like a bit of a hard slog and then BINGO!!! a parasite diagnosis – d.fragilis a nasty little bugger responsible for fatigue, fevers, anxiety, allergies and tummy troubles. Immediate relief from treatment of this and back to 4/10 potsy immediately with the ability to implement protocol and keep improving.

    As a nutrition and naturopathy student and from my experiences I truly believe that debilitation from POTS syndrome is due to a cofactor. Another infection, a parasite, inflammatory diet, incorrect protocols is responsible from moving pots from being an underlying condition you just have to keep an eye on to an overwhelming illness that keeps you bed ridden.

    My treatment is all natural. I initially took a beta blocker how ever this made my blood pressure so low I couldn’t get around AND it blocked my ability to listen to my body and what I needed. I also initially took florinef however this causes its own problems being a steroid it suppresses your bodies immune function and therefore makes you more prone to infection (I got a major tummy bug immediately after). I believe 100% in resolving the causes rather than suppressing individual symptoms with medications that have flow on effects/ cause Other problems. I too found medical practitioners not really interested in the cause or resolving it all together so I am developing a treatment protocol myself which addresses endocrine and nerve function.

    My email is corinnemulvena@gmail.com if you want to chat further 🙂

  18. My 12 year old daughter was diagnosed this week. I am looking for help with treatment and nutritional advice. I had never heard of this prior to 5 days ago. She has many of these symptoms, but to a lesser degree than what I’ve read here. I would appreciate any direction to help me learn and understand what she’s going through and how I can help her and be an advocate for her care. Thank you….

    • I find for me nutritionally.. is to eat mini meals through out the day. Almost like a diabetic diet. Eating small portions of lots of variety of meat, fruit and veggies and healthy carbs (whole grains) and snacking every 2 hours in between meals. There are lots of things you can do at home for her. Make sure she always has a drink.. water is the best. If she gets very weak in the shower, a shower chair, always making sure she has somewhere to sit. Also, places like Walmart, etc. sell diabetic socks, or socks that help with blood flow in the legs without having to buy the expensive ones she may not be bad enough to need. I think they are about $5-10 a pair, and just look like regular knee socks 🙂 Definitely keep on your doctors. I don’t know what the doctors would be willing to do for her medication wise, bc she is young, but bug them about finding a way to regulate her heart rate, bc if possible, that will help a lot. An at home blood pressure/heart rate monitor would be really good, bc if she gets on medicine, then you can keep track of how it’s working, and if it’s lowering her blood pressure too much, which you have to be careful of. Also ask about possible autonomic testing, or nerve testing in the legs. It could be possible she has actual issues with the nerves in her legs causing this, and there are ways to fix it, but I’ll be honest, they would shock her up and down her legs and arms, and it’s not a pleasant test. Hopefully bc of her young age, she will still grow out of it 🙂 And search for POTS groups on facebook bc there are TONS. We learn more from each other than from the doctors unfortunately.

  19. Hi! My name is Julia. I am 18 years old and I was diagnosed with hyper pots a few months ago. I got really sick at the end of august right before I was about to start my freshmen year of college. I have not been able to go to school yet and I’m driving myself crazy being at home while all of my friends are away. But it’s also hard when they are home for breaks because I can’t even do the things I used to be able to. I can’t walk up the stairs in my house without feeling as if I just ran a marathon. I can’t be in church anymore because it becomes too difficult with the sitting, then standing, then kneeling, then standing; etc. Sorry to vent, I just have become so relieved reading this blog because I haven’t spoken with anyone I can relate to and reading all of these posts has helped me already. Anyways after my cardiologist diagnosed me with pots I have learned what to do to lessen my symptoms. Although I have bad days, I do have some good days and I was wondering if you have any ideas of possible part time jobs that would work for someone with pots? I still can’t go to school and I am trying my hardest not to go crazy being stuck in my house all day. if you have any ideas that’d be great. thank you so much for this blog and all of these tips!!

    • I hope they helped! There are a lot of great facebook groups to help too! I swear we learn more from each other, than from the doctors. If you are having a hard time getting people to understand what you’re going through, good The Spoon Theory. It’s an amazing way to explain being chronically ill. Please let me know how you are doing! And fight those doctors constantly, no matter how tiring, to get them to do something for you 🙂

  20. Hello my name is Ciara, and I am 20 years old. I was just recently diagnosed with POTS and have no idea what I’m going to do. I’ve only fainted twice, once during my graduation and another time in my 4 day stay at the hospital. I have all the symptoms. I can’t sleep, I’m constantly sick to my stomach, my blood pressure is always really high so I’m always really hot. Just sitting and standing is hard now. The doctors don’t want me on any medications. Even though I have joint and chest pains every day. I even have trouble breathing. All i want to do is sleep. For years they told me I couldn’t have all these symptoms that I was making it up, and now they say I have this chronic illness but won’t explain to me what I’m supposed to do. Any help would be greatly appreciated. I’m just at a lose on what to do.

    • I’m really sorry to hear this. You seem to be a lot like I was, when I first got sick and had high blood pressure. I would recommend tons of water, laying on your right side helps with chest pain bc it takes the pressure off the chest. If you can get a bed wedge pillow, that will keep you partially raised, but still allowing yourself to rest and relax, also taking pressure off the lungs. Nausea is the worst. Look online at places like Amazon, or in health food stores for Ginger Chews. They don’t taste great but OMG the nausea goes away way better than Gravol pills. Also Gingerale too or ginger tea will help. Stay away from red meats, or anything that maybe too hard to digest. Get a shower chair… you will thank me for it, bc it’s been my biggest blessing. Hope this has helped 🙂 And if your doctor isn’t helping… ask to be referred to a Neurologist. They will rule out any nerve damage that might be causing the blood pooling and yourself to faint, and if your Cardiologist isn’t helping… ask for a new one. There are medicines out there that will lower your heart rate and blood pressure which will make a HUGE difference for you. My family doctor had never heard of POTS, so if I wanted a certain test done as an example, I’d print out from a website why it may help me, and brought it to her, and let her decide if she thought it worth doing. Best of luck, and never give up fighting those doctors!

  21. Hi my boyfriends cousion suffers from POTS and it changes from day to day. His bp rises and drops very quickly and he has seizers because of it to the point where he passes out no convoulsing but Passes out for more than 5 mins and sometimes it happenes. any helpful information that you can give me so I can help him and his family would be great. He’s an amazing man just very unfortunate that he has this at 26.

    • A lot of what I could offer to you, is above in the tips section. If not already, he should be seeing a Cardiologist to get his heart rate and blood pressure under control, and a Neurologist to make sure there’s nothing physically happening to the blood flow in the body. He should sit as much as possible, a bath chair is essential, and a stool in the kitchen is a huge help. Walmart sells socks for blood pooling, and does make a difference. Not a huge difference, but it does help. He just be drinking crazy amounts of water when he first wakes up, and constantly throughout the day. Adding salt to everything he eats will help with blood pressure. Tell him not to worry, as long as what he is adding it to is healthy, most Cardiologists will recommend it. Small frequent meals. Eating every couple of hours so sugar levels do not crash. I hope these help him even a little. No matter how exhausting it is, he must continue to fight the doctors to do whatever possible.

  22. I am a 31 yr old mother of 2 and I was just diagnosed with pots. I am so sad, but I am also grateful that I am not dying yet. Someone tell me there is still a way to camp and enjoy life with my active family. I pray every nite that God will heal me. I just really need hope. It is so hard to just have tour “normal” life ripped away from you. I never thought that I wouldn’t be able to drive.

    • According to my Neuro most people with POTS do grow out of it… but there are cases where people don’t. You being a mom is a hard respectable job on its own, let alone with a chronic illness. Your best bet, is to use your community’s local resources. Ask your doctor for someone who can help fund a bath chair for you, and things around the house that will help conserve your energy. They will go through the things that are hard for you to do, and think of things that would help… like electric can openers even. They know the resources and the forms you will need to fill out to help fund them. I have personally gotten a PSW as well. There should be places in your area that help with free services. Mine isn’t so much a nurse bathing me, but instead helps me change the sheets, clean my windows, vacuum, even meal prep. I know it’s a bitter pill to swallow, but it does save you a lot of energy that you can use for your children. Best of luck! Please keep me informed with how you are doing!!!

    • Hi Chasity, please email me at kellierose312@yahoo.com if you don’t mind talking with me. I’m also a 32 year old mother of two and I don’t know what to do anymore in regards to my Pots. I hope you are doing better. Thank you, kellie

  23. I am a 23 year old woman from England. I first fainted when I was two years old, yet diagnosed with having pots last year. All my life after my fainting episodes I would visit the gp to find out why it happened to be told “just make sure you eat breakfast” “its just a random faint” up until recently with faints occurring more often I finally got referred to a neurologist who then referred me on to a cardiologist then diagnosed with pots I am currently on no medication after previously being on fludrocortisone and midodrine which did not have any effect. I am now being advised to see a councillor to deal with my condition and therefore enjoying to read your blog and comments to learn.
    Sam

  24. Thank you so much for all the tips! I’m in highschool and it’s a struggle trying to figure out what helps and even just explaining it to people. My sister has had it for years but we vary a bit. I am still learning. I haven’t been diagnosed for very long but due to my experience I know it is rough. So thank you for the encouraging helpful tips!! Please keep going!! I would love to talk to you more if you would be willing. If you are shoot me an e-mail … To be honest I know I have a thousand questions but idk what they are yet or where to start just confused and frustrated. It’s nice to know there areother people that understand this unexplainable condition

  25. I am 14 years old. I was diagnosed with POTS a month ago. I have been having symptoms for over a year now. I went to go a cardiologist and was diagnosed with a heart murmur. They put on a heart monitor for 1 month. When I went in about a month ago I was told that I have POTS. Having POTS is effecting my school work. I have had to leave class rooms because of the pain. I’m trying to find ways to cope.

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