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POTS... Anyone have any experience?

Discussion in 'Parents Off Topic' started by Ndiggs, Jan 15, 2012.

  1. Ndiggs

    Ndiggs Approved members

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    So after 4 days in the hospital, my wife was diagnosed with POTS (Positional Orthostatic Tychcardia Syndrome), and I was wondering if anyone here has any experience with this? We are meeting with her whole new team of Docs next week, but we wanted to get some first hand knowledge if possible.

    Thanks
     
  2. emm142

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    If LisaP doesn't reply to this, you might want to PM her - I may be mistaken but I think it is POTS or something similar that one of her daughters has.
     
  3. Ndiggs

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    Thanks Much Emma! I will do that if she does not comment
     
  4. Lisa P.

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    Hi!
    My nondiabetic daughter, she's 8, was diagnosed with a blood pressure regulation problem related to POTS. It took us over two years to find someone who figured out the problem, we know that it must at least be in the ballpark because the treatment works.

    The cardiologist explained it to us that it's a problem of the sympathetic and parasympathetic nervous systems, that they don't work in concert properly. It's not an overall low blood pressure, the problem is that when your bp is supposed to go up, it doesn't, and when it's supposed to go down, it doesn't. All you can do to address it is raise blood volume and so raise blood pressure overall for the low times.

    She had stomach pain and saw spots, particularly when she laid down to go to bed. She was not getting enough oxygen to her digestive system and brain. She also had fog and memory problems, and I figured out later her cognition was impaired because it cleared up.

    She drinks Gatorade every morning and that makes all the difference. What I've learned from her and the doctor and a woman I met with POTS is that
    1. For some reason, Gatorade seems to work better than most anything, even Powerade
    2. If you skip the Gatorade, it takes a while to "catch" back up. You need to stay on the salt regularly.
    3. Gotta be water as well as salt, the salt keeps the water in the bloodstream but if you're dehydrated it can't.
    4. Activity with the large muscles helps, that was all that helped my daughter before we knew about the POTS, I read that with POTS your blood pools in the extremities. I think my daughter liked large muscle activity because like a soldier on the parade ground she needed to use her thigh muscles, etc. to push the blood around or she lost circulatory power.
    5. But too much activity can make for a rough night, so it's a catch 22.

    I don't know if your wife went through the same thing, but for my daughter and my friend there was a good deal of misdiagnosing before the right one was found, and not a little "maybe there's nothing wrong, maybe it's all in the head". My daughter was in so much pain and spent her life so foggy, it has changed our lives so much for the better now that we know what this is and how to deal with it. I hope things get good for you guys real fast. I know there are many levels of dysautonomia, I hope hers is not so severe or at least that it responds well.

    The cardiologist said two more interesting things. He said for his teens with the problem he sometimes suggested they drink a ton of Gatorade before they even got out of bed in the morning, enough to make their urine practically clear (although maybe that was water, because I don't know for clear with that nasty dye in Gatorade!). He also said that when you get back to feeling better, there's some thought that the body may begin to regulate itself at least better, if not entirely. I've also heard that you're stuck with POTS until you get older and your arteries harden enough to create a different system on its own, but I like the first idea better!

    Excuse any inaccuracies. Hope any of that help, it's basically the whole of what I've got but please PM if I can help at all. Hope your wife is feeling better, it must have been a horrible bought, I understand POTS can become completely debilitating and its a very confusing and disorienting thing, very scary because you're so out of control and maybe no one can figure out for a long time what's going on. She has my greatest sympathy, as do you, and I hope everyone can get on track to feeling better soon.
    :cwds::cwds:
     
  5. Lisa P.

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    Bumping in case anyone hasn't seen this thread and has info.
     
  6. Tricia22

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    In 2006, I started having issues with what they were calling "benign sinus tachycardia". I did a holter monitor study, TONS of lab work (both blood and urine tests), EKGs, stress echocardiograms, etc. My heart rate during the Holter monitor study went up to the 140s when I was just sitting at my desk at work. My regular heart rate without activity, ceffeine, stress, etc. was in the 100 - 120 range and I was getting palpitations and dizziness all the time. No one could figure it out for YEARS and it wasgetting to the point where the metoprolol they had me on was having little to no effect on bringing down my heart rate anymore, so finally last year I decided to see a neurologist thinking it's gotta be something nerve related if it's not heart related. She tested me for all sorts of stuff, including doing a lumbar puncture to test for MS since that runs in the family and I have the autoimmune stuff myself - no answers still, so she sent me to a cardiologist friend of hers who said it could be POTS since I have the anxiety, the sinus tachycardia, and the gastroparesis but no neuro, stuff actually diagnosed - they were debating between POTS and diabetic autonomic neuropathy. I was put on a different beta blocker for my heart rate and it really helped for a while, but it feels like it's not working as well as in the beginning AGAIN...
    POTS is a form of dysautonomia... it's also classified as a "syndrome" which essentially is a grouping of symptoms seen together and as such -there are no hard and fast rules about presentation. POTS can show in any of a variety of ways - mild, severe, involving just BP, just pulse, just GI, all of the above, etc.
    Syndromes SUCK - generally there is no definitive cause, just symptoms to go by for diagnosis, and there's never really a cure or perfect treatments either...
     
  7. Becky Stevens mom

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    Does your wife also have Mitral valve prolapse? If so, she may have mitral valve prolapse syndrome/dysautonomia. Ive been told that these conditions are in the same family as POTS and is often treated the same. I do have a prolapse and many of the symptoms of dysautonomia including. Rapid heart beat, heart palpitations including premature ventricular contractions (feels like a skipping record in my chest) fatigue, often extreme, anxiety, panic attacks, dizziness, IBS, low body temp, etc, etc, etc. Here are some links to info about MVPS/Dys

    http://www.mitralvalveprolapse.com/

    http://www.wright.edu/nursing/practice/mvp/
     
  8. Ndiggs

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    Thanks for the input everyone. Shes doing better today on the meds they started her on and TONS of fluids. Worked a half day today and was beat at the end of it, but it will get better with time we hope. Lots of different specialist appointments over the next few weeks, but hopefully they will get a handle on it. One nice thing about having the University of Michigan in your back yard, there is a Dr. there who has a research focus in just about everything :)

    Thanks again, and if anyone has any other thoughts or ideas we would love to hear them, as she is still trying to get her head around this
     
  9. Chaser

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    My daughter has dysautonomia w/ POTS along with her cousin. Both girls were started on IV hydration therapy. The doctor wanted both girls to have ports put in, as they could no longer handle multiple sticks each week. My daughter wanted nothing to do with a port and continued to try to be "stuck" each week. Eventually they could no longer get a line in. She increased her fluid intake; on top of what she was already drinking.

    With dysautonomia the flight or fight response is very elevated. What I noticed with Katelyn was a vicious cycle. Once we were able to help medicate the flight or fight response the cycle slowed. She doesn't have constant migraines. She is still struggling and I'm still fighting with the school system. But, I feel I can finally see the light.

    She also has GI issues and Ehlers Danlos syndrome.

    Both of the kids are being evaluated for Mitochondrial issues.
     

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