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About kayjay

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  1. I developed high blood pressure with my first pregnancy. I now know it's because I had pots. I may have had it (or had some signs of Dysautonomia) prior to my pregnancy but the monitoring of my blood pressure was a measured problem. I wasn't diagnosed until years later (at least 10). With my second baby my blood pressure wasn't high but there was some blood pressure issue when I gave birth. Suddenly my room was full or people -I thought I was dying or passing out- something really wrong. It was 16 years ago so I don't have medical records etc. to help. If you are expecting now please know I had two pregnancies and two healthy children-. It's empowering to have a diagnosis. I can't think about it two much but had I been diagnosed k think things would have been better for me. Best wishes.
  2. Would some of you be willing to share titiles of exercise DVDs that work for you? My old ones are not good for pots. For example Jillian Michaels Shred and other DVD's with too much cardio or position changes.
  3. Thank you for responding. I think most of what you said applies to me and you are wise to have accepted what is best for you.
  4. I just had problems last night. I was at a church event (new church to us and closer to my home). Anyway long story short it was an unfamiliar group of people and everyone was standing and talking so of course I did too. I came home with a very sweaty top, massive headache and feeling like I could vomit. My blood pressure resign was 166/100 (this is once we got home and I had been sitting). It made me think of your post and the need to mention compression stockings and salt. I wasn't wearing compression and I'm sure it would have helped. I also suggest looking into a long acting Benzo. I've been on/off .05 mgs of Klonopin for years and at this point I'm ready to admit it really helps. I think it helps more than the beta blocker. The less I stand the better I feel. Somehow I'm dumb enough to try and act "normal" around people I don't know well and I'm paying for it today. If you can walk around do that as much as possible and don't be shy about sitting with your feet up. I was diagnosed in 2009 and still sometimes forget that lifestyle changes can be the most helpful.
  5. Mine is really uncomfortable to sleep in and the information is more "fun" than useful. I don't really monitor my heart rate any longer but it is much more comfortable than a strap around your torso. I think it's most useful for counting steps and I'm pretty depressed when I see how few I take most days. I'd say more fun toy and not so useful but I'm not exercising much these days. Mine isn't water proof but it might be fun for tracking exercise.
  6. Sorry for the slow response. I don't get on Dinet very often. I do not have flushing. I can't say that I never flushed but I don't think I do now. The nadolol seems to help by lowering HR and blocking some of what adrenaline does. I honestly never asked why I was put on it becuase at the time my blood pressures would get really high. My tilt table showed a heart beat increase of around 100 bpm.
  7. Your body is most likely dumping excessive adrenaline when you stand. It's compensation for the drop (that may happen so quickly you can't measure it). When I had my first tilt I had low BP and a qiuick drop in BP which almost immediately became high BP. It is not true that salt directly raises blood pressure so make sure you get enough salt, it helps you stay hydrated. I also take nadolol and Klonopin. Both help block the excess adrenaline. FYI I was diagnosed with Hyper pots in 2009. Mayo Clinic Rochester.
  8. I have a question for anyone inclined to answer. I also was diagnosed with hyperadnergic Pots. My worst symptom is chronic fatigue and I havebeen diagnosed with CFS (although it's going through a name change). Does anyone with CFS do better with exercise? I was very fit years ago and am now deconditioned for sure. Exercise makes me sick for a few days. That's a hallmark of CFS. Obviously there is a lot of overlap between POTS and CFS anyway. And to be clear by exercising I mean anything cardio. I can do mild yoga type things to a certain degree. I alos do well in a pool but again if I over do (like take 2 pool classes instead of just 1) I'm worse for days.
  9. I also was diagnosed with Hyper Pots by mayo clinic. Pheocromactoma was ruled out for me and I've been on nadolol since 2009. I was on 40 mgs at one time. Now I take 1/2 a pill every night (so approximately 10 mg)
  10. Totally agree. My son doesn't have celaic according to modern medicine but putting him on a strict gluten free diet healed all of his problems. If he accidently has any he gets sick (thankfully this has only happened a handful of times. He doenst have the genes for celiac but he had all of the symptoms and changing his diet really was a cure for him. His doctor put a diagnosis of "gluten Intolerent" into his chart. She has been his pediatrician for a long time and agrees that gluten free did the trick. The GI doctor was certain that he didn't have a problem with gluten. After 3 years of not thriving a diet change made a huge difference in less than a month. We are 1 1/2 years gluten free and prais God he is vibrant and healthy. excuse the pun but definitly "go with your gut".
  11. My vertigo was not related to movement or position. Even in bed I felt as though the room was spinning or rocking (like being sea sick) Vertigo is one of the symptoms I no longer have. I went on a 100% gluten free diet (and no oats) and I am convinced that my vertigo resolved over time due to the diet change. Your daughters are very blessed to have a mom advocating for them. My children thankfully do not have dysautonmia but they have had health issues. It's a job getting help for our kids some times. Good for you for not giving up!
  12. I'm plus one on the gluten free. I was first told to go gluten free at mayo clinic by Dr. Robert Fealy. Top neurologists are commonly ant-gluten. I understand why people are resistant, but my only regret is not doing it sooner. My second thought is provigil and focalin (adhd med) has also helped with my brain fog.
  13. Nymph- look for "exercise" shoes. I have MBT boots but I think they went out of business. Ant that claims to ingage more muscles.
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