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Pots And EDS

Hey guys, I've been reading through the stories and figured it was time to share my own. It seems like most of you are idiopathic, but does anyone else have pots as a secondary illness? Namely ehlers danlos syndrome and the various Mitochondrial diseases are what I'm interested in.

I developed pots my doctors believe as a result of eds or Hypermobility syndrome because I'm too stretchy on the inside and the De conditioning that comes with the injuries. My doctors say that there is really nothing they can do but control symptoms as it is progressive and pots associated with another illness is usually pretty hopeless. My quality of life is suffering because they have pretty much given up on finding new treatments and the ones I tried either stopped working or never started. Even the positive effects of iv fluids wear off after about a day and I can't be going to an er or infusion center on the daily.

I guess it's time to find new doctors but we all know how much of a fight that is. So i guess in the meantime I am wondering if any of you are in a similar situation and if you've found anything that helps at least give you the semblance of a normal life.

Thanks :)
deleted deleted 26-30 2 Responses Feb 9, 2013

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Hi--you're not alone. I have been diagnosed at the age of 53!! For 22 years I was saying, ya know, this anxiety medicine doesn't work so well. I got really sick about a year ago, fever,vomiting (lost 60lbs) found out along the way I have genetic Common Variable Immune Deficiency, some type of connective tissue disorder, maybe a weird EDS or poss. Loeys-Dietz Syndrome (VERY rare, but could be) and hyperadrenergic POTS was at the bottom of the vomiting. Also have tethered spinal cord, boy is the POTS bad. I finally got my PICC last week and learned this: by some stevia sweetened powdered electrolytes to add to your water, and drink at least 6-500ml bottles a day in ADDITION to your IV and meds. That 's finally gotten me out of be for the FIRST TIME IN SEVEN MONTHS!! I am totally deconditioned and stood up today without fainting, for the first time in a year!! It's not a death sentence and there are ways we can cope. Good luck! and hang in there.

Hey, I'm 15 and I've got a pretty servere case of pots and autonomic failure and eds, I've been in hospital for 4 months now and I've read absolutely everything about the illness, and been up to London to see the world expert professor Christopher Mathias (for the pots) and professor Rodney graham (for the eds). What you need to do is drink as much water as possible, I'd say for you 2 and a half-3 litres a day, that will help u come off the iv fluids! The second thing is you need to increase your salt intake- sea salt on your food is fine but also using dioralyte is fine (but it's gross), you should try and have small and often meals to stop pooling when you digest your food. Keep your physical activity as good as possible.. Then if all of that doesn't work go and see a pots specialist.. There are many medications to try, but if they try and put you on atenolol or any other beatablockers, they will probably worsen your eds symptoms making it all worse. Midodrine is a good medicine, and fludrocortisone is good too.. Keep off otritide because that's bad for your gut with eds (not comfortable at all). Hope this had helped a bit, and hopefully you will be sorted soon! It's such a ridiculous illness! Much love x

Ohh dear, maybe you should have more infusions then if you have a fluid restriction.. That complicates it! Dunno if I would even be half conscious without my water! Move to GB and see proff Mathias! He's an amazing doctor but obviously I'm paediatric so we had to pay 400 to see him-.- I especially wouldn't go on otritide if you have gut problems anyway!!:S I think you should just have more infusions!