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Everything posted by yogini

  1. I agree with the protein, but sushi seems to have more benefits for me than eating grilled fish. Assuming you eat it with soy sauce you are getting tons of sodium. I've found that this is a much better way of keeping up my BP than Gatorade.
  2. I am a big supporter of meds as they enabled me to get better, so I was not suggesting she should not take them or reduce them. Just pointing out that you may want to look into the side effects of what she is taking to see if they could be contributing to her symptoms.
  3. It is certainly possible to feel very sick with POTS and have your vitals (both HR and BP) normal. My doctors didn't realize this and when I first got POTS I spent months searching for other things that could be causing my symptoms. I am sure now for me it was "just" POTS; that doesn't mean that's the case for your daughter and you should keep searching for answers if you think something else is going on. I would also look at the side effects of the meds she is taking. Meds can cause a whole host of symptoms on their own.
  4. The symptoms you describe could be symptoms of POTS so I would not assume respiratory failure unless a doctor discussed this with you. Although it may be listed on the site I don' think it is very common (not to say you do or don't have it, only a dr can tell). If you are having respiratory problems you may also want to see a pulmonologist.
  5. I think you can have low/lower BP with hyperpots, but one of the key symptoms is a large increase of BP upon standing. Many dysautonomia patients (like me!) tend to have orthostatic hyoptension - meaning your BP drops upon standing, but hyperpots is characterized by orthostatic hypertension, meaning an increase. See this description from a Dr. Grubb article. It is interesting to me that this is a less common form of POTS. So many people on the forum talk about hyperPOTS that I assumed it was more common! The second (and less common) form of primary POTS is referred to as the "hyperadrener
  6. I thought one of the key symptoms of hyper POTS was an increase in BP upon standing. If this is the case, it doesn't sound like you have hyper POTS. I would ask your dr why he/she thinks you have it. Apart from a handful of POTS specialists in the country, I think most doctors get confused about the terminology.
  7. I wish they would leave all of the unnecessary ingredients out too. They scare me. I haven't had any reactions and wasn't focused on this point at all until I saw the dye free meds and wondered about the dye. Yuck.
  8. I noticed that my drugstore carries dye-free Benedryl and Advil, which are more expensive than the regular version. I am not sure why manufacturers include unnecessary ingredients like dyes in our medications. Is there any danger in the dye that make it worth paying extra for? I tried googling this and couldn't find any info.
  9. You may have anxieties on top of your POTS. POTS patients can get out of breath while talking. Have you tried lying down while on the phone?
  10. I realized that ice has the added benefit of increasing my BP, esp when it is on my neck. I am definitely using it more often from now on.
  11. I've used a heat pack all of these years on my neck and shoulders. I've been using an ice pack this week because I had my wisdom tooth out and put it on my neck. It actually feels great. I never thought of using ice before because I hate the cold. Heat is great for my pain but I think ice actually feels better...
  12. Yes, I think many of us have a hard time processing stimulation of any kind - noises, lights or anything that causes phyiscial or emotional stress.
  13. Hope, I think you are right that it is very personal Glad you found one that works so well for you.
  14. I have heard the same thing about buying refrigerated probiotics. I ordered the CVS brand online. They were half off plus I had a 30% coupon. I have heard that generic meds are the same (usually from the same processing plant) as brand name. I suspect this would be the case even for something like probiotics...but realize probiotics may be easier to screw up than a plain old drug like aspirin which is just a chemical compound. Hopefully I won't regret this decision, lol!
  15. Was thinking of restarting probiotics after a friend recently had a good experience. Was wondering whether any of you have tried a generic brand like CVS? Does anyone know whether these work as well as the brand named ones like Culturelle, etc?
  16. If you read through old posts here, people seem to have good luck with Omron BP monitors. You can also read reviews online at places like amazon.com and they are not too expensive. I think a BP monitor is very useful to have for people with POTS. I used to take my BP every morning and night and write it down.
  17. Going up stairs is a form of exercise, one of the hardest forms. Exercise intolerance is very common with dysautonomia.
  18. Stairs are a challenging form of cardio. Upright exercise makes POTS worse. I think it is important to do some stairs so you don't lose practice. I have gotten better with time. That being said I usually take the elevator or escalator whenever I can. There are many other ways to build leg muscles that are more POTS friendly!
  19. I always go for the other less powerful option (I think it's lidocane) and my dentist is happy to use whatever I feel comfortable with. Even though it may be passing, it's not worth the risk/added stress for me.
  20. I'd try to find someone in your area that's on the Dinet doctor list, and ask around if others here have seen that dr. The key is finding someone that is experienced in treating POTS.
  21. There may be some people on the forum that have this issue, but it does not sound like a typical dysautonomia symptom. "Heat intolerance" to me means having trouble going outside in the summer heat, and that is when people wear cooling vests. There usually isn't a problem indoors. I would definitely push for further testing to figure this out. Do you have any other symptoms besides just feeling warm? What are your body temperature, HR and BP when you are waking up? When I feel warm, it is usually due to tachycardia.
  22. I never found out what my subtype was. It hasn't been a focus for me because seems like doctors don't udnertand the subtypes bery well; doctors don't understand POTS and NCS well, let alone the subtypes. I am not sure how much the subtype makes a difference in the treatment.
  23. If you are dehydrated or have low blood flow, this could be a symptom. I would also check the side effects of any meds you are taking.
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