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Everything posted by yogini

  1. Yes, all of my POTS symptoms became infinitely better with a low dose of Paxil. Form what I understand, Paxil helps the body maintain BP better. For me, my heart is beating faster in order to maintain my BP. I got on Paxil and my tacky went down. I was slowly able to reduce my beta. I could also exercise more. The beta blockers helped my tachycardia but made me tired and lowered my BP -- so they worked, they were better than no meds . but the Paxil worked much better. It took me 4 years to work up the guts to try Paxil. I wish I had tried it from day 1. It might not work for you
  2. "Normal" BP is 90/60 to 120/80. So if your BP is 90/60, your pulse pressure would be 30. If you have a BP of 120/110 that would probably be unusual pulse pressure. Remember that BP is always changing and the home BP monitors aren't always accurate. I wouldn't assume that forceful heartbeats are related to an issue with pulse pressure - but mention to your dr and they will give you the proper advice, explanation.
  3. It is important to make sure your doctors know about this. It sounds like they do - and they will know what tests to run to make sure you are OK. A lot of us have very strange sensations around our heart. Strage heartbeats, pain, burning sensations, etc. Usually it is not dangerous, just uncomfortable - but your doctor can tell you best. I would also try to note when these sensations are happening to see if there is a pattern - certain time of day or certain actives which trigger. That can be helpful to try and figure out the cause.
  4. What is your blood pressure when lying down? It is common for BP to drop very low while lying down/sleeping. Beta blockers tend lower your BP - so if you already have low BP they may not be the best med for you - or you may need something to supplement your BP as your dr suggests. Change is scary, but on the other hand there is always a chance that change will make things better than they are. I was on betas for many years - they made me functional. I was scared to change - but when I switched to Paxil and got off betas I actually felt a lot better and could be more active.
  5. Yes - I feel lethargic at home. I don't feel like getting up or doing anything. But once I am up and about I feel like staying active and don't want to sit down. Maybe there is something there to pushing through it.
  6. I would contact the local cardio to see if they will talk to you abtou this particular condition, which is a cardiac condition and not POTS. It sounds like it would be helpful to get a second opinion from a doctor that is more familiar with the condition and gives you confidence.
  7. The Polar HR monitor is ECG accurate - meaning it is scientifically very accurate. If you have doubts, you can always count your pulse by hand. Pounding heart isn't always the same as a fast HR -- you can have one without the other. Pulse pressure is just the difference between your systolic and diastolic blood pressure numbers. You can figure out if it is too narrow by taking your BP when you are feeling these symptoms. POTS is a very weird condition - you can sometimes feel sick even when your HR and BP are normal. I would try to identify if there is a pattern that is causing t
  8. You may have to experiment a bit. If the doctor told you to take this and it keeps giving you a headache, I would let him know. It's also not enough to drink the water just with your medicine. You will have to drink all day.
  9. I didn't like the taste. Chicken broth works best to keep me hydrated.
  10. I don't disagree - but I'm just not sure the public will get that. These days people talk about the mind-body connection to say that you can improve medical conditions like insomnia and blood pressure through things like yoga and meditation. It implies there is a mental component contributing to the condition. That isn't the case for POTS, at least for me - and many of us are trying hard to fight that misconception.
  11. I agree. It also makes sense - why put harmful chemicals in your body!
  12. The whole 30 diet sounds interesting though! I may give it a try.
  13. There can be many reasons. Sugar and gluten can affect us, but carbs also tend to be filling and pool blood to our stomach. Pots patients are told to limit carbs to help with postprandial hypotension.
  14. Interesting. I wonder if MS or Parkinsons would be classified as a mind-body disorder? I think people generally get that they are physical conditions, not controllable.
  15. Hi Sylvie, It's pretty common for people with ANY chronic/serious illness to have anxiety, depression or other mood disorders. Think about it - it is very emotionally difficult to think about mortality, to lose your mobility and not be able to live like a "normal" person. If you once were "normal" it a great loss. In our case many of us experience this at an unduly young age, where none of our friends can understand it - many of our families also can't understand. We miss school and work and can't take care of our families. We also struggle to find treatment as you point out. But a
  16. I'm not sure it's helpful for POTS patients to call our disorder a mind-body disorder. To a layperson, it makes it sound like something we can control. It isn't.
  17. Is your HR or BP off when this is happening? Are your arms falling asleep or just weak?
  18. It is awful. No one else can understand what it feels like unless they have a debilitating, chronic illness. Everyone think's we're healthy because we look healthy. Healthy people don't like to think or talk about illness. This forum is really special place where we understand each other and freely share our experiences about being ill. I hate to say it, but I think many of us feel crappy and just suck it up and keep moving forward. The scariness and the ups and downs you get used to over time. If your parents are doctors, could they help you come up with a treatment plain tail
  19. Are your symptoms orthostatic - worse when you are standing? If you have a sustained drop in BP 30 when you stand, that may be another common form of dysautonomia. The symptoms that people have from POTS/dysautonomia overlap with many other disorders - that's why many of us get misdiagnosed. A doctor can tell you best, but if you don't have the orthostatic HR and/or BP issues, you may want to look at other illnesses. Although some people have occasional irregular heartbeats, most people with POTS have normal sinus rhythm. If you hare having palpitations that is probably something to inves
  20. I had a 24 hour HR/BP monitor when i was first ill . My HR and BP both went very low. My dr told me this was normal. If you think about it, it makes sense - you need less blood flow at rest lying down. When I took oxygen once my HR went low, so that may also be a factor here. It's always good to check with your dr to confirm - especially if you may have other medical conditions besides dysautonomia.
  21. If you have heard really good things about the Dr and he is experienced in dysautonomia, I wouldn't worry so much. Maybe you could call the nurse and ask if any info would be helpful? You may want to write down your history, symptoms and questions -- just so you don't forget when you are talking to the dr. The truth is that your treatment plan will probably take multiple appointments and be figured out over time. You may have some tests and it isn't unusual to try a few different meds before finding the right combo. It is encouraging that you have a dr that other people have wonder
  22. I have dealt with this issue through beta blockers. A beta blocker will slow down your HR and also help to put you back to sleep. Maybe ask your dr whether this is appropriate, You could also keep a diary of what happened during the day - I found that this symptom happened right before my period, or if I exercised too hard or from dehydration. You can identify and learn to avoid triggers. Also, remember that it is scary but a common symptom and usually not dangerous. Anxiety makes it worse, so it is important to calm down.
  23. I have the acupuncture mat. I like it as s yoga prop but don't think it had helped with symptoms
  24. I buy a brand called better than bouillon (sp?). It is organic and comes in a concentrate/paste. It's about $6 for 30 servings. You just add it to hot water. The best!!!
  25. Lily, I would continue to go with what works for you. Many people have exercise intolerance. Going slow was the only thing that didn't trigger my symptoms. I think many people try exercising hard (for example the Levine protocol) and are disappointed when they can't handle it. If exercising hard doesn't work, slowing down can be a good option. If faster works for you, it might make sense to just stick with it as long as your dr doesn't object
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