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Everything posted by yogini

  1. This is very great advice. I too am much better/functional. For most of us that have improved, it takes a lot of trial and error, hard work and patience. I remember many people over the years - some extremely sick for years. Many who were sure they'd never get better did.
  2. Yes, curious to know -- what is an "adrenaline crash"?
  3. Sorry to hear your challenges. It is frustrating even with basic POTS, so I can't imagine. I don't know anything about gastro issues - I think there is a separate forum. Maybe that would be a good resource for you.
  4. Supine hypotension is a concern even when taking a nap or even when lying down awake, but you should be able to manage it by timing doses. Also, for many POTS patients the BP is low enough, that even with midodrine you do not have hypotension. This is why I have sometimes slept with midodrine in my system or compression hose on -- and have seen others post about this. But it's very individual - so pls check with your dr.
  5. If you are transition ion from a pediatric doctor that you like, you may want to start by asking that person for a recommendation. The Dr situation in NYC is not great. I tried a bunch of different specialists and had good luck with Richard Mueller. He's a cardiologist, not a POTS specialist but is familiar with POTS and was willing to listen to my suggestions.
  6. I think with a lot of these medications you have to try them for weeks or months to see if they work. Also, one medication might not work by itself, but might work in combo with another med. For example, beta blockers and florinef sometimes work together. If one beta blocker doesn't work, another might. It is really personal so you have to work through it with your doctor. If you don't have a good doctor, maybe someone in your area can help you find one. I don't know about gastroparesis but a lot of people have experience - so you may want to post separately and also search through old PO
  7. If you are eating in the morning, maybe you are eating too much? I have a hard time with eating in the am. I eat more later in the day. At my worst I couldn't get up in the morning, so I feel your pain.
  8. The best thing to is ask your dr and/or pharmacist, My understanding is that you can skip or delay the dose of midodrine in order to take a nap. Skipping a dose shouldn't reduce the effectiveness of midodrine - I assume she isn't taking it at night anyway, and this should be no different,, Though not ideal, I think a lot of us also wind up taking naps with compression hose on or midodrine in our systems.
  9. If your daughter has been diagnosed with vertigo,has potential mast cell and is taking medications, it could be one of several causes. It could be POTS, it could be something else. I've had POTS related spasms and mine don't sound like what you are describing.
  10. It takes a few weeks to adjust when you first try a beta blocker. I've tried 3 beta blockers - one I couldn't breathe on. It's a very different for each person, so it's best to talk to your dr. Beta blockers statistically have the highest success rate in helping POTS - I've read they work for 50% of the people.
  11. I also had ringing in the ear before POTS. It can be caused by other things - like allergies. But I started getting increased sounds in the ear with POTS - pulsing, ringing, crunchy noises. It can be in one ear for me or both. I went to an ear dr at one point. It probably doesn't hurt to do this to be safe.
  12. Yes, you have to push past the fatigue. It is really hard but if you keep doing it, you will improve. Elevating the head of the bed is a great idea. You can also sit and put your feet up.
  13. The Polar HR monitors with a chest strap are ECG accurate (medically accurate). The Fitbit isn't accurate. There have been lawsuits about this. There are times when my Fitbit is way off from when I measure my pulse. I use it to get a rough sense of my HR. If you think the averages are wrong, you can try to contact their customer service.
  14. Mental illness and stress do not cause POTS. If you do have POTS or dysautonomia it is a physical condition. POTS can affect your ability to deal with stimulation. You may have something overarching which is causing both the POTS and the mental illness. I encourage you to persist and not give up. If you find the right treatment, you could feel a LOT better.
  15. Yes, this is a pretty common symptom of POTS - both ringing in the ears and hearing and/or feeling your pulse.
  16. You should ask your dr but you usually have to supplement florinef with salt to ge the full benefit.
  17. Do IV fluids help you? Maybe the dr could give you extra fluids to keep up your BP?
  18. I have seen a lot of these kinds of notes in my file which didn't mean anything. But you should ask a dr or try google.
  19. It takes some time to adjust to florinef. But when you also started a new job during the same time period, that could also be a contributor. It can be helpful to take regular measurements of your HR and BP a few times a day - sometimes they are good clues as to how you are feeling.
  20. Have you (or your husband) measured your HR and BP while these episodes are happening? That would be the best way to figure out if it is POTS related. If you're yawning and your muscles are convulsing, it does sound like it could be BP as that is a normal body response to low BP.
  21. That is a great update. Good to hear that he is making progress. Does his HR increase when swimming? I can't tolerate lifting weights. Swimming was too messy for me - between getting to the pool and then the water isn't good for my skin, eyes and hair. Also upped my HR too much - I would have to sleep for the rest of the day. I switched to yoga - which didn't increase my HR too much and worked.
  22. You are correct to think about this issue - a vasodilator that lowers BP doesn't sound like it would help you if you already have low BP. It might be helpful to google these medications an read about their side effects - but the definitive answer would be from your dr.
  23. I agree with MomtoGiuliana. Lying down makes your body less used to being in an upright position. Also, sometimes right after you stand up, your HR goes up a lot and then settles down after a few minutes - so if you are measuring it just for going to the bathroom this may not be an accurate measure.
  24. We tend to be more sensitive, Usually it is nothing to worry about. Diets have improved POTS for many. There are so many different diets that work - you may want to read through old posts on the forum.
  25. It's always a good idea to check in with your doctor for unusual symptoms. If your HR is 130+ lying down, he may want to give you medication (such as beta blockers). That being said I think it's very common for people with POTS to spend a day or even several days in bed from time to time when our symptoms flare up. This can happen for any reason, but often happens for certain triggers - for me it is when I overexert myself, have too much alcohol and/or around the time of my period.
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