Things I find help with POTS Symptoms

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!!

#1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea most days, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, the hubby did his research while I was having a bad episode and he really wanted to help. We found that ginger tea works almost instantly in settling nausea and upset stomach. Tastes a bit yuck but I wouldn’t care if it helped and boy does it!

If you have real ginger it works best, Ginger and Lemon tea bags are good too but dont work as fast or as strong. What I normally do is get a Ginger and Lemon teabag, brew it and also add a tea spoon of real finely chopped or ground ginger so that its not just the flavour your ingesting but the actual ginger itself and it works almost instantly!! Its a must!!

I am blessed that the better half has packed out the home cooking with ginger too and I have found I am now waking with little or no nausea in the mornings, its great and leads me to the next tip!

 #2Home Cooking and changing eating habits really help to alleviate the symptoms of POTS. People with POTS have a strange diet change and usually it goes against what every Dr. and Health pro would tell you to do! At the start when I was first diagnosed, I hadnt cut out certain things like: Starchy Carbs, Dairy, Sweets and take away or processed foods or increasing things like Salt (20 grams a day for me but ask your Dr. for individual cases) to increase blood pressure and pulse, black coffee for heart and energy stimulation, All these things have a huge impact on symptoms. As soon as I started to follow this advice I felt great the very next day with only tiredness to battle which is easy without pain and sickness!!

#3: Keep Hydrated, it is soooo important for everyone to keep hydrated but especially people with POTS because of the fluids lost during certain symptoms (I don’t need to gross you out!). I find electrolyte drinks like Powerade excellent but others likeLucozade isotonic drinks give me headaches so you have to find the one that works for you. Electrolyte drinks hydrate faster than water but you should try to get at least 2L of fluids into you a day in the form of water mainly and then these drinks 2nd.

#4: Know how to rest during important times like showering where your body is under stress, Get a shower chair and limit the amount of overhead arm movements as this can trigger syncope/fainting episodes very easily because of the heat of the water and blood pooling in the legs. Reduce the heat of the water to what you can tolerate and before you leave the shower, rinse your legs in cold water to cause your blood vessels to constrict and pump blood back up to the heart and brain.

#4.1: If going from a lying position to standing, sit with your legs down for a few minutes before attempting to stand up, this will allow your body to acclimatise to the change of position and will reduce the risk of fast blood pooling and syncope episodes.

#4.2: If you find you slump or hit a wall in the middle of the day while up and about, take a bed break! I find even as little as an hour snoozing can give me a tiny boost of energy for the rest of the evening, its minimal mind you but you would risk further symptoms triggering if you don’t listen to your own body and take a rest when you need to!

#5: Take Vitamin D, Ask you Dr. first to be sure but its known as the sunshine supplement, this is brilliant as people with POTS may not be very mobile and cant get outside as often as they should. As well as taking all the meds we need to take, Vitamin D is known to help nearly all organ tissues in the body and it has psychological benefits,  as does real sunshine, ever heard of the winter blues? A lot of people get affected by the lack of sunshine in winter and it can actually trigger depression, its all down to the lack of vitamin D. Sometimes its hard not to feel down with an illness so increase this and you will increase happiness as well as organ tissue health! :)

 #6: Avoid Stairs on bad days, goes without saying really but putting that pressure on your heart rate when you are already feeling low is a very bad idea and you do not want to faint at the top of a stairs!

#7: This is going to sound cheesy but THINK POSITIVE!!! I have been doing heavy research on POTS and Dysautonomia in general and the amount of what I call ‘Doom & Gloom’ videos online is frightening! Those videos or write up’s of how bad and terrible people have been feeling, Avoid this crap! Really, the power of positive thinking can really float you a long way and I’m no hippy but it works! So concentrate on the things you CAN do and not the things you cant, be happy for what it is you have and not what you haven’t got, thinking like this really does make a difference. Use your time wisely and creatively and share your experience so that others can share alike, you never know, ya might learn something along the way! ;)

#8: After being advised by my Dr’s in the hospital before leaving, they gave me and told me to get some Compression or Embolism Stockings to help stop the level of blood pooling that happens in my legs. They have proven very helpful and on the days I don’t wear them I usually faint, when I do I can stand for longer and usually get more hours awake during my day so I highly recommend these for other Pots or Dysautonomia sufferers. They can be gotten from any pharmacy or from your local health nurse, also this brand: ‘Jobst‘ are excellent for support stockings of all different colours, shapes and sizes which is great to colour code with clothing and are far prettier than the usual plain white ones you get at the pharmacy! You can get half leg, up to the thigh and tights style stockings so which ever works for you, personally I find the higher the stocking the more support and benefit they are but each to their own and find what works best for you. Not only that but they suck everything in!! Thats gotta be good right?!! :p

 #9: Sunglasses are now a lifesaver! I don’t know which of the tablets are doing it to me (and it is the meds as the Dr. told me it would happen I just cant remember which one does it!) but I have become highly light sensitive and my prescription sunglasses from long before getting diagnosed with Pots are getting more use than ever. If you dont have sunglasses and are finding this with Pots/Dysautonomia meds I recommend a high UV filter in whatever shades you decide to get, dont skimp and get cheapy ones because they will ruin your eyes and have zero UV protection which will damage your eyes in the long run. Pay well once and mind them, it will be well worth it!

 #10: A blood pressure monitor and a heart rate watch are 2 things I have picked up and have started tracking my daily stats. Not only for myself but for my Dr’s as I will be seeing them so infrequently I would rather keep a full history on the days they haven’t seen me. I find them excellent for allowing me to slow down when I need to and for when I know I can push myself that little bit harder too.

 The heart rate watch is pretty cool as it doesnt need a chest strap and I got it on sale at Amazon. Its a Womens Sportline 710 analogue heart rate monitor watch and is very accurate and not as bulky as other heart rate watches. Click on the link there if you want more details but its currently on sale on Amazon for half the price you would buy in stores.

The Blood Pressure monitor is a Sanitas SMB 30 Upper Arm monitor and I picked this little beauty up in Lidl for €17.99!! It works perfect and I didn’t break the bank! Upper arm is considered the most accurate, try and avoid the wrist monitors, they cant give as accurate a reading (apparently, im no expert, just going by reading lots of stuff and what my Dr. said!)

#11: Also for keeping track of my stats, I use my Android phone and have an app called ‘BP Log‘ which has a lovely clean, no nonsense interface and is very simple to use.

Anyhow, that’s all for now until I think of more, if you have any questions or want to take part in the blog or new youtube channel (Where there will only be positive videos, none of the ‘Doom & Gloom’ kind!) please let me know. Thank you for your interest.

Lette (The Fainting Goat!)

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35 thoughts on “Things I find help with POTS Symptoms

  1. This was helpful. Have started with ginger tea too. How long did it take you to start feeling better? Sounds like about 6-8 months?

    • Awesome… What is the prognosis with POTS does it get worse over time? Have you ever tried Mestinon or any other drugs to treat it? Thanks for all the great info!!!

      • Hi Jean, welcome to the page. As far as I know its different for everyone, You may outgrow it if you get it as a teenager or it could progress and get worse over time or vanis completely after a few years if you get it later in life or after pregnancy! Its terribly unpridictable!

        From the Wiki:

        “Most POTS patients will see symptom improvement over the course of several years. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution by their mid twenties[citation needed]. Patients with post-viral POTS will also usually improve greatly or see a full symptom resolution. Adults who develop POTS, especially women during or after pregnancy, usually see milder improvement and can be plagued with their condition for life[citation needed]. Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms. Patients with secondary POTS as a consequence of Ehlers-Danlos Syndrome will also usually struggle with symptoms for life. In some patients the only cure for POTS is time.[30]
        Many adult patients report a relapsing/remitting course characterised by periods of partial remission and occasional ‘flare-ups’ or exacerbations.
        Recovered individuals do complain of occasional, non-debilitating recurrence of symptoms associated with autonomic dysfunction including dizzy spells, lightheadedness, flushing, and transient syncope, as well as symptoms of irritable bowel syndrome[citation needed]. These symptoms are consistent with B12 deficiency in absence of anemia, which should always be ruled out directly by checking B12, homocysteine and methylmalonic acid.[6]”

        http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Prognosis

  2. Great post! I love your positive attitude. Those Doom and Gloomers give us all a bad name. And I love your comment, “I’m no hippy but it works!” Had me giggling over here in NY.

  3. Hi my name is Nicki & I’m just awaiting to be tested for POTS! I’m having a really hard time I’ve nearly crashed my car by falling asleep at the wheel, I have constant dizziness & feel terribly sick & poorly. I live in the uk & finding life a little rough would be glad if anyone can give advice & tips. This site I’ve stumbled across & I think its brilliant Xx

    • Thank you so much for visiting, Welcome! 🙂 – Please note there are further informative links on the right hand side of this site in the ‘Blogroll’ 🙂 – May I ask where in the UK are you based? There is a specialist Autonomic Clinic in London that specialises in Dysautonomia and EDS etc. I can give you further information if you like? 🙂

  4. What can one do when experiencing gastric paresis? (Having no bowel movement for days with abdominal bloating and increasing girth?)

  5. Great ideas…. My son is 13 and has CFS/Pots. Trying the Deliciously Ella diet as much as possible…..
    Will give him a ginger tea when he wakes up!!!
    Chin up…..
    Caroline W

    • Hi Caroline, thank you for visiting the blog, I hope your son is doing well, as I said in the comment before, Just please be very careful of how ‘Delishiously Ella’, phrases things, she says her diet ‘cured her pots’ – please know this is rubbish, there is no cure, it can only be managed and when it is very well managed you can live a practically normal active life. HOWEVER at your sons age of 13, it is very likely that he may grow out of the condition, as there seems to be evidence that the younger you get the condition you may grow out of it by late teens, young adulthood if managed well. This is not a guarantee but gives a little bit of hope 🙂

      You may find information on that here:
      “The good news is that, although POTS is a chronic condition, about 80 percent of teenagers grow out of it once they reach the end of their teenage years, when the body changes of puberty are finished. Most of the time, POTS symptoms fade away by age 20. Until recovery takes place, treatment can be helpful.”
      http://newsnetwork.mayoclinic.org/discussion/though-no-cure-for-pots-symptoms-can-often-be-effectively-managed/

  6. Hi Everyone,

    To Caroline I have just yesterday discovered deliciously Ella all the way from Australia. I am 27 and was diagnosed with POTS a year and 4 months ago and I have been on medication ever since. Recently I have tried to reduce some medication in an attempt to start recovering using healthy eating. I have gone Paleo (style of eating similar to caveman) and found the most helpful thing for me is to have a really big breakfast almost like a dinner meal for breakfast and YOGA! specifically Iyengar yoga as we hold poses for longer periods of time.

    Yoga gave me half a life back….I honestly was not able to get out of a lying down position for months and through the practice I am now running a Montessori school and studying a Masters, however my symptoms are something that are with me everyday.

    I have learnt to manage these and the tips above are spot on and have all helped me however I am thinking now to maybe try something similar to deliciously Ella. It is such a relief to know other people understand what I am going through.

    Sylvia (Sydney, Australia)

    • Just please be very careful of how ‘Delishiously Ella’, phrases things, she says her diet ‘cured her pots’ – please know this is rubbish, there is no cure, it can only be managed and when it is very well managed you can live a practically normal active life. 😉

  7. I am 42 and I am having a problem drinking fluids espically water it makes me so nausea and sick
    I can hardly do exercises and I stay bloated all times I take 5 stool softener’s I cant breathe when walking a fast pace I gained weight and cant loose it for nothing
    I moved so I have no pots dr now ugh!!!

    • would you local doctor be willing to read up a bit to help you?? Fluids through IV are highly recommended to potsies with difficulty drinking fluids, also I find water very hard to drink on its own, I prefer isotonic drinks which also actually hydrate better and faster than water so maybe try those or even a cordial to put in the water, even some lemon juice makes it easier. As for medication, the main thing is betablockers for a fast heartrate to calm it down and something to raise your blood pressure if is low. but even a local doctor with a bit of reading should be managing you.

  8. I am lying in hospital, after being diagnosed yesterday following six weeks in hospital, finally confirmed with table tilt test and 24 ECG trace thing. I am in the Midlands of England, and when told yesterday, was also told that a specialist in London had immediately been contacted to help with my care, so cardio team looking after me well. None of the staff on my ward have even heard of it, they are learning alongside me, it is a hell of a thing to come to terms with. Anyway, just wanted to say how useful your tips are. I am on a massive learning curve as I readjust to this “life altering” situation. But it is not a “life ending” situation, which is better than a lot of people get – thanks for the info. Gill

    • thank you so much for checking out the blog, I am sorry you have been diagnosed, it is not easy at first but it is a manageable condition, as you say, not a life ending one 🙂 If you have any questions, im no expert but I try to help people through my own personal experiences, feel free to ask or get in touch, it is a learning curve, but you are not alone 🙂

  9. I am so happy I found your blog! My 14-year old daughter was diagnosed 4 years ago and we’re managing but it’s always nice to hear of someone else going through it too. She looks so perfectly healthy that it’s hard for people to realize she is not faking or lazy. I admit sometimes I have to remind myself. I cook almost every meal from scratch because of all of the GI issues. Protein in the morning is a great way for her to start the day. Thanks for your advice and love your positive attitude! I’ll be checking back!

    • Thank you so much for popping by, I greatly appreciate it and I hope your daughter is doing well, thankfully it is mostly said that if you get Pots that young in your teens you may just be more likely to ‘grow out’ of the condition, so thats a teeny bit of hope!:)

      You may find information on that here:
      “The good news is that, although POTS is a chronic condition, about 80 percent of teenagers grow out of it once they reach the end of their teenage years, when the body changes of puberty are finished. Most of the time, POTS symptoms fade away by age 20. Until recovery takes place, treatment can be helpful.”
      http://newsnetwork.mayoclinic.org/discussion/though-no-cure-for-pots-symptoms-can-often-be-effectively-managed/

  10. Thankyou so much for this post- i have been struggling with pots for 2 years now (I’m now 18) and took me such a long time to get diagnosed. Im struggling really badly with the nausea at the moment, no able to do anything during the day and especially at night (i think I’ve caught a virus and its effecting me badly) . Do others find your symptoms and nausea get severe after dinner? Ugh it’s a nightmare at the moment. Does anyone have any tips for advice to give the people around you because i seem to turn non responsive when i get back and don’t have the energy to tell them how to help not that i know what to do myself! Still a major challenge! I really found this post solo helpful drinking ginger tea as we speak!

    • Hi Madi, welcome to the blog! 🙂
      I’m sorry to hearyou have been struggling with your pots, but I can giveyou hopeful news in that the usual trend is if, you get it in you teens, you are more likely to ‘grow out’ of it compared to getting it after pregnancy or later in life, so thats a little thing!!

      You may find information on that here:
      “The good news is that, although POTS is a chronic condition, about 80 percent of teenagers grow out of it once they reach the end of their teenage years, when the body changes of puberty are finished. Most of the time, POTS symptoms fade away by age 20. Until recovery takes place, treatment can be helpful.”
      http://newsnetwork.mayoclinic.org/discussion/though-no-cure-for-pots-symptoms-can-often-be-effectively-managed/

      There does seem to be a link between Dysautonomia (The umbrella term under which certain autonomic dysfunction related conditions like Pots would fall) and gut problems in general, please have a read of this study here: http://www.ncbi.nlm.nih.gov/pubmed/24068608

      And a more in-depth look at it here with suggestions to help it, I myself have been on a low fodmap diet now for the last year and a half, you may see that diet plan here, always get advice from your doctor before starting anything new, even a new diet 😉 http://fodmapliving.com/wp-content/uploads/2013/02/Stanford-University-Low-FODMAP-Diet-Handout.pdf

      I find it excellent to help the nausea and vomiting, which yes, always seems to get worse after eating. you may need some investigations to rule out Gastroparesis and other problems: https://thedysautonomiaproject.org/gi-symptoms-mast-cell-activation-mca-disorders-and-dysautonomia-is-there-a-link/

      As for what to do with people around you if you are non responsive, agree a plan in advance of that ever happening, with your family, partner, friends etc. that works for both of you, for example, My husband gives me his hand or index finger and will ask me a series of questions like what I may need or how I am feeling, (Please tell your people to speak clearly and calmly, theres nothing worse than you feeling like crap and the other person is freaking out around you!) I will squeeze his finger in an answer, like once for yes, twice for no etc. and it seems to work well and I dont need to over exert myself trying to speak or nod my head!

      When you get a ‘turn’ like that, if your BP is low you need to sit or lie down with your legs higher than your waste to allow blood and oxygen back up to your head. Pots in general needs lots of hydration, but there is such thing as too much hydration, never take more than 2.5 to 3L a day unless advised by a doctor to do so. Salt, salty snacks, Black coffee, Cola, all help low BP but some people can tolerate those drinks so go with whats best for you.

      I find electrolite drinks the best as I explained above, I will do an updated version of this post I think 😉

      Thanks for popping by, please dont be a stranger now! and enjoy the Ginger tea, I hope it helped 🙂

      Lette (Fainting Goat!)

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  12. Thak you for the great tips. I often hear about what I shouldn’t eat but as it’s now winter a lot of the veg here in the UK is root veg like parsnips carrots etc. What have you found the best things to eat? My stomach pain is the worst symptom I have. Thank you

    • Hi there! I’m new to this site and also suffer from POTS! I had a massive episode when I was about 10 that lasted for about a year, at the time they had no idea what it was. I constantly complained about horrible stomach pains and nausea. I am 20 now and am in the midst of another episode, it’s been about 5 months (hoping this one goes away sooner than the last one), but I never had any issues in between these. We didn’t know I had POTS up until two months ago (bless Dr. Grubb and Dr. Karabin, they are amazing), but it was suggested I change my diet. I am now gluten free, dairy free, and consume minimal sugar, which seems to be helping! Of course I am on meds, just like most POTSies, but it’s really just to control the nausea, I’m on an off-brand Zofran. I was tested for celiac and everything, which I don’t have, but the gluten thing triggers me a lot. Apparently that sometimes happens with POTS. I had never heard of it before and couldn’t find much about it online either, but I have tested this out and it does help, so maybe it will be beneficial for you like it has for me. It would hit me like an hour or two after I ate anything containing gluten; the nausea, dizziness, palpitations, and general horrible, “I’ve been hit by a bus” feeling was unreal. I have also found that blood sugar crashes (like an hour or so after eating sweets) makes me feel absolutely terrible! Nausea, palpitations, the whole nine yards. I’m not sure how gluten is metabolized by the body, but I’m willing to bet it is similar to how the body processes sugar, such as the sugars in milk/sweets. I’ve also found it helpful to eat a lot of protein, and try to mix protein in when I have sugary things. For example, fruit has a lot of natural sugars, so I eat apples with peanut butter to keep from having a blood sugar crash. It’s all about balance. I hope some of this helps you! Stay strong!

      • Thank you so very much Taylor! I actually have been on the Low Fodmap diet for a couple of years now, thats Gluten free, Dairy free and free of certain sugars and acid causing fruits and veg etc. I have found it very helpful for sure. I too am on Liquid Zofran, I find it very good but like you, if I accidentally have any allergin I feel so very sick very soon after now so I just stick to the Low Fodmap diet. Thanks Taylor and very welcome to the bloggie 🙂 Lette

    • hi there Cheri, it’s funny you should ask as it’s not the first time I have been asked this question however I think it’s just down to the fact that we have a good community surrounding it here, as far as I know, there have been no studies to give an answer to this so I couldnt even guess, but this is the second or third time I have been asked this!! Welcome BTW 🙂

  13. This is so helpful! My mom was just diagnosed and I live far away from her, can you please recommend any other products or services that would help someone with POTS? Thank you! Hope you are doing well!

    • Hi there Kate, welcome to the blog, I hope your Mom is doing ok after her diagnosis? The only thing I would have to add is, I personally have found the ‘Low Fodmap Diet’ very helpful to ease my tummy and gut issues, it’s no cure but has helped the nausea and vomiting which used to be really bad, now they are somewhat under control and not daily any more! 🙂

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