POTS stinks!!

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I'm actually the mother of twin girls suffering from POTS syndrome caused by the Epstein Barr virus. They're currently on supplements because the regular md told me they do not give anything for Epstein Barr. We use a holistic doctor. Up until now people surrounding them have been very understanding about their situation, but recently, I guess because they're not getting better at the rate some people think they should, people all of a sudden have become critical. Do any of you have issues with this? I'm trying to do what's best for my girls!!!  

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8 Replies

  • Posted

    If they have been officially diagnosed with POTS are they not under the care of an autonomic clinic? Have they tried the increase of fluid, raising the head of the bed, supine exercise, beta blockers etc? Beware of snake oil merchants!
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    • Posted

      Yes they have officially been diagnosed with POTS. There is no clinic and the medical doctors here will not do anything to help. They are now under supervision of a holistic doctor who also went to med school. He has done more to help them than anyone. They are gradually getting better. He's not a snake oil doctor he actually knows what he is doing. My question was about handling family and friends who do not choose to understand or research but well give "advice". 

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  • Posted

    It may be worth signing up on the dysautonomia international forum as that is a much more active community for POTS etc. Some may even be local to you and I have seen a number of discussions on there about dealing with family and friends.

    I have lost many a 'friend' since diagnosis but it really only proves they werent a friend in the first place. On the flip side I have also grown closer to some true friends.

    Have a look on the site for the nearest dysautonomia specialist too. Even if it involves travelling it may be worth it to get as much research backed treatment to get the chaps feeling as well as possible as quick as possible.

    What treatments have they tried?

    All the best.

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  • Posted

    Im afraid  that its part of chronic illness. Most people will tell you the same who have lived with chronic illness for years. Friends move on and find new healthy friends, people are often critical of things they dont understand. Invisible illness is the worst. People dont want to hang ot with the sick person sad  Most of us end up on here finding friends and people who understand as they going through it themselves.  You can try and educate people .. sending links to websites etc so they can see for themselves . At least they have you and each other which is more than alot of people have.

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    • Posted

      They have already lost their "best friend" which devastated them. The thing is most of the kids their age are very understanding its the adults who aren't. 

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  • Posted

    The Epstein-Barr virus is very common in the 15-25 year age group. It is also known as glandular fever or "the kissing disease". Up to 95% of people have been exposed to this virus. The natural essential fatty acids in coconut milk helps to fight the active virus so this should be included in both of your daughters diet. As instead of using cow's milk substitute coconut  milk with their breakfast, baking and even fruit whips; and up to two litres of diluted fruit (eg. blackcurrant juice) and vegetable juices(eg. carrot, pineapple, tomato, apple, celery) or vegetable soups for the vitamin C, beta carotene content and other nutrients. Also vitamin B's complex, preferably a slow release tablet and up to 3,000mg of Vitamin C. A really good healthy diet is critical in the recovery of glandular fever. One of my nieces had this at 17 years old while still at school and recovered quickly following this diet. If not coconut milk, you can also take 500mg of Efamol, three times daily. Which you can purchase from a Health food store or naturopath.    

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    • Posted

      We are all in the same understanding and dilemna with having POTs. It does not matter how we came to have it by way of a fall, car accident, virus or congenital disease this impacts on our daily life in ways only we really know. I was diagnosed with POTs three years ago. And thanks.smile I hope your daughters recover quickly.
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