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yogini

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Everything posted by yogini

  1. One thing to consider is how you feel after exercise. For example even if I let my HR go to 140 at the gym, my heart never calms down after exercise. I get headaches. So even though 140 is normal for riding a bike, I know I have to keep my HR below that. If you don't have any after effects, you might be able to push yourself harder. There are some people on this forum who run marathons, etc whose drs have OKed very high heart rates for them while exercising. Your ideal heart rate while exercising is based upon your age, height, weight and gender. When you use an exercise bike or othe
  2. I am so sorry that you have gone through this. It is hard to know why this woman is doing this - maybe she is trying to help? It sounds like she actually knows a lot about POTS - more than most people in my life do! But she is totally stepping out of line, especially if you don't have a good relationship with her int he first place. Can your BF talk to her and tell her to back off? He should really be doing this and standing up for you. The only reason you are dealing with her is because of him. He could simply say mom, I'm sorry but pumpkin doesn't feel like talking about her heal
  3. I started with canned soups but now I use organic broth. You can buy it in cubes or paste format. The canned soups have lots of chemicals and MSG.
  4. Even though you feel like you are having an adrenaline reaction, this is very common with dysautonomia. The surges, fight or flight, ups and downs of symptoms, almost all of us go through this. Some of us have issues with cortisol - but usually not. Your doctor can tell you best.
  5. For many of us we are worst when we first get sick and slowly find improvement. Are you taking any medications? I have mild POTS, and am mostly better now. Getting on meds helped me exercise - and the exercise helped me get better. DINET has good information on medications and doctors that can help you figure out a treatment plan that works for you. You may have to try a few different things before you find the right combo. Good luck!
  6. I tried it, but could't handle the taste. It does neutralize stomach acid. I drink organic broth - that is the only way I can stomach extra salt.
  7. I don't know about the old polio vaccine. Some of the more recent research on vaccines/autism etc. is pretty controversial -- probably off topic for this forum. I think the research on HPV vaccines isn't controversial, though, so that is the one vaccine I would be most concerned about.
  8. It sounds like you have a lot going on. I am glad you are consulting with a doctor. Most medications take time to adjust to, and the one episode you had could have been caused a number of factors, not just the new medication. Data can be helpful, but there is also a danger of over-analyzing. Personally, I usually push my doctor to let me wait a few weeks between trying new medications - otherwise there are too many variables and no way to be sure what is working or causing side effects. I eventually found a med (Paxil) which worked for me and helped to relieve all of my POTS sympt
  9. State of, it looks like she is on some beta blockers which are for the HR. Tachy girl, i would try to find a POTS specialist n your area. It takes a long time to find the right combination of medications, and a POTS doctor can help you best. Unfortuantely is a lot of trial and error - it might mean adjusting your doses or trying new medications. There are some rotors listed on this site and there is also good information on medications. What worked best for me was Paxil, but we are all so different.
  10. Have you seen a doctor about the neck issues? Many of the issues you mention are very common with POTS - breathlessness, not being abler to talk, skyrocketing HR. Neck pain is also common, but the neck/head issues sounds like they need special attention. There are some common co-onditons that people with POTS have which can affect the neck. Chiari and EDS are a couple of them. i don't know a ton about these conditions but others may know more.
  11. I second the other post - lots of great info in old posts on the forum. Things that work for me: strictly following rules of sleep hygiene, exercise, melatonin, sleep music and if needed Ambien.
  12. I agree there's a link between HPV vaccine and POTS/CFS. I was just wondering whether there was any research about other vaccines? The research on HPV would not generally impact the safety of other vaccines.
  13. There is research linking the HPV vaccine to POTS. The problem with the HPV vaccine was that it was rushed to market and mandated in some states while it was very new. We are learning about the after effects now, after it is already too late for some people. But each vaccine is very different. Is there research linking other vaccines to POTS?
  14. Yes, I wrote mine in a notebook 3x/day. Morning after lunch and evening. Write down the BP and the time. If you do it for month or 2, you will see a pattern. Make sure you have an accurate BP monitor and that you read the instructions - have to be still etc otherwise BP gets screwed up.
  15. Ask your doctor. The doc may run some tests to make sure your heart is OK. Chest pain is a very common symptom of POTS. Most of ht time it is not dangerous, but only your doctor can answer the question for you. Also try to keep track of your symptoms and activities to see if there is anything that is triggering the chest pain.
  16. 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
  17. "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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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
  23. 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.
  24. I didn't like the taste. Chicken broth works best to keep me hydrated.
  25. 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.
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