POTS and digestive symptoms

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I was wondering if anyone here with POTS has experienced improvement with digestive symptoms with treatment for POTS. specifically the types of treatment that are geared towards helping the heart rate and blood pressure and not treatments specifically for digestive issues. The reason I ask is that I am already on medications for the GI symptoms and have found little relief. I'm wondering if once I start treatment for the POTS it might indirectly help my digestive function as that is something that is fairly severe for me. I have delayed stomach emptying (gastroparesis). Just looking for some hope as I wait to see the specialist. TIA

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  • Posted

    I also have experienced major digestive issues including having to be tube fed in hospital a while due to weeks/months nausea/vomiting. I haven't had a gastric emptying study yet but gastroparesis has been mentioned (I vomited for weeks/months). As you know I'm not diagnosed pots so can't really add anything other than - me too!

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    • Posted

      Wow sorry to hear you struggle so as well. I do better on a liquid/soft foods diet. I've been able to avoid tube feeds so far but have lost a lot of weight over the past few years. I was obese when all my troubles started so not underweight as of yet. Hopefully we can get some improvement once we see the specialists. I really struggle to eat and drink enough which doesn't help with all the other symptoms.

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    • Posted

      It sucks being a medical mystery doesn't it - which is what it's like undiagnosed I think! Not knowing who to go to for help or what can be done, hopefully you're near your answers now!

      I think gastroparesis is linked with dysautonomia isn't it? A girl on my ward had severe pots and gastroparesis. Yeah my vomiting thing also helped massively by a semi liquid diet low fibre low fat; dietician one person whose advice really helped while all the tubes, anti emetics etc didn't change a thing! So when I had a reoccurrence I avoided hospital / tubes this time luckily by reverting to liquid diet. After a few days of that mine seems to calm down and I can transition back to more normal food. Which is great when I have help cos I'm not up to whipping up soups when it's bad!

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    • Posted

      yes gastroparesis is linked with dysautonomia. delayed or rapid gastric emptying are symptoms of pots as well. I have a whole bunch of individual containers and when I make soup I stick a few in the freezer so I always have some on hand during bad flare ups. you should look up crystal saltrelli's blog. She is a nutritionist who struggled with gastroparesis for many years and specializes in it. Her site has lots of information and recipes that may help you especially during the flare ups. 

      I know for me, I struggle with mental illness, managing stress levels is super important and almost impossible to do with PTSD and anxiety. Stress definitely triggers flares for me. I know the nutritional shakes recommended for gastroparesis patients always make me feel worse. I do better on real food, smoothies, soups, etc.

      I suspect when I get my dog, who I'm training as a service dog to help with both PTSD and POTS symptoms, my stress levels will hopefully be a bit more manageable and so hoping there will be fewer flares. Good nutrition is so important and so hard to get with any type of GI issues. 

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    • Posted

      feel free to message me anytime if you have any questions about gastroparesis. That diagnosis I've had for over a year now so might have a few tips to share though I'm still learning to manage it. 

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    • Posted

      Amazing, thanks so much that's so kind and the blog you mentioned looks really helpful! Both my major vomiting episodes were set off by physical stress (a mess up with a medicine I'm prescribed where i was overdosed massively...twice) but I've also found stress makes cycle worse/continue and do mindfulness to try to help! Sorry to hear you're dealing with several other tricky problems too; do you know when your pots appointment is yet? Hope they're good!

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    • Posted

      no unfortunately I do not yet have the appt. I will be calling my referring physician soon if I don't hear anything. 

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  • Posted

    Hello......sorry to hear about your POTS problems.  I have had POTS since  l was 13 years old only officially being diagnosed at 50 years old then later on with other heart conditions as well, so l know how frustraiting it can be.

    Ive had terrible problems with emptying my digestive system , l once went for 16 days and ended up unable to eat and in horrendouse pain and vomiting.

    The drugs l was given have never helped at all and the only way l have been able to sort myself out is to eat .....pineapple , fresh pineapple ....l think by now l must have eatten a whole plantation of the things .

    Over the years l have tried so many other drugs, so called natrual liquids and tablets , porridge , prunes....omg the stuff lve eaten 🤢🤢🤢🤢.

    l now eat pineapples & strawberries with some vanilla yogurt for breakfast .

    And an assortment of other dishes like : 

    pineapple upside down cake  with custard, pineapple fritter with maple syrup, pineapple with rice pudding.......pineapple chicken .......and it works .

    After 55 years of pain, discomfort and bleeding l once bleed heavily for 23 hours and became  very anaemic, so much that l was on 600mg of iron a day and even now l take 200mg .

    Talk to your GP if its getting bad , dont suffer in silence please.

    Lady Amelia xxxxx

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    • Posted

      I'm sorry you have had such difficulties but glad you've been able to find things to eat. The pineapple thing actually makes sense. Pineapple has bromelain in it which is readily available in health food stores as a digestive enzyme. 

      I do see a gastroenterologist for my digestive issues but the meds they've given me are only somewhat helpful. I often end up on a liquid and soft food diet when my digestive symptoms are flaring up, which is too often for my liking. 

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