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yogini

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Everything posted by yogini

  1. Could her oncologist coordinate with the dysautonomia dr or do some research? She and you should not have to figure this on your own. In general I think you’d want to monitor her heart rate and blood pressure and make sure she is hydrated, and consider the side effects of the meds/treatments she’s on and how they might affect her HR and BP.
  2. If you are having multiple changes effect from licorice, Florinef, herxing, it might be hard to tell what is causing what. If your blood pressure is coming down from reducing Florine’s, how about compression hose to keep it up?
  3. Julyrose said meds that expand blood volume are contraindicated for her and that she adds salt and drinks gatorade. Those have the effect of expanding blood volume. That's why I suggested that she coordinate with her doctor.
  4. it is unusual that you have high blood pressure in your brain but keep fainting at the same time. Usually people faint when there isn’t enough blood getting to the brain. Have you had your blood volume tested? if meds that boost blood volume aren’t allowed you may want to ask your doctor if you should be increasing your salt intake. The purpose of the salt is to increase blood pressure and blood volume.
  5. In my opinion broth is the most effective drink is broth followed by lots of water.
  6. Many people here do have allergies or asthma which is separate from dysautonomia. I’d get this checked out sooner than 3 months if you can.
  7. Do you need to go in the summer? It is extra hot and crowded. I would spend some time researching Disney for people with disabilities ahead of time - and also just how to navigate the park. There are many things you can do to prepare and make your trip less stressful. There a lot of good books and websites dedicated to this. Don't hesitate to use all of Disneys disability services if you need them. Who cares what people think about the scooter, when you'll never see them again! I've grown up going to Disney and been their twice post-POTS. Bbut by the time I went I had very mi
  8. This could be one of.a number of things. I get fluid from my nose when I tilt forward which I always assumed was mucous. I also fluid from my ear which I assume is water. Everyone is different but a doctor could tell you for sure.
  9. Dysautonomia has some scary symptoms, including chests pains, but in and of itself does not usually cause a risk for a heart attack. However, your doctor could advise you best. He or she could do a full workup, take into account your family history and give you guidelines on if and when to go to the hospital.
  10. Many people with dysautonomia drink 3-5 liters per day. Check with your dr, but 2 liters does not sound like it would wash out your salt or electrolytes, and washing out salt is often helpful if you have high BP anyway.
  11. Many with dysautonomia are diagnosed with another condition like gastroparesis, lactose intolerance, celiac, etc. You may want to get tested for these if you haven't already. Personally I've found eating foods with fiber clogs me up. Especiallywhen my stomach is bothering me, I do much better with very simple easy to digest foods - Jello, baked potato, rice, steamed chicken, etc. Lots of fluids are also helpful.
  12. I remember people posting about EPO from time to time on this forum when I first joined 15 years ago. It doesn't come up much anymore. I know a little about EPO because a while back my mom was on it for anemia. After a few years of taking it, the doctor took her off of it after some research re risks was published. So I think it would be important to think through with your doctor.
  13. I'm not sure that intense exercise like marathon training is included in any of the exercise protocols for dysautonomia. Most of the ones I've read involve gradually building up with moderate exercise in a reclined position - things like recumbent bikes and swimming.
  14. Unfortunately Dysautonomia is a condition that waxes and wanes in a way that is beyond our control. The best of us cn relapse even though we work hard at our fitness, etc. Usually the initial diagnosis is the hardest and the next time around it is easier. Getting a bad case of the flu is also something that can cause a relapse so most doctors do advise to get the shot. I’ve gotten it every year. I have felt dizzy sometimes right after getting the shot but it has gone away in a few hours. I hope you’re back to your baseline soon.have you checked in with your doctor?
  15. People disagree on this, but I don't think the category of dysautonomia matters all that much. Many people have a range of symptoms and have both POTS and NCS. The treatments and mediations you can take are largely the same - beta blockers and florinef are used to treat both conditions. It just depends on what works to make you feel better.
  16. Sorry you are having so many challenges. Have you been diagnosed with dysautonomia? I think most medical professionals aren't good at treating patients who are in any way outside of the box. My PCP is decent and he's had some PAs (or other doctors in his office) who are terrible. I now insist on seeing only him, even if it takes longer to get an appointment. Along my POTS journey, I met several doctors who didn't listen to my symptoms and speculated random illnesses. I never went back to them, ever. I would just forget that you ever had the appointment with that PA.
  17. My doctors did not give me IV therapy when I was sick. I did have an IV a couple of times in the hospital and felt much better. It does seem like a very good option, especially for people who don't respond to medicine.
  18. Yes definitely keep track of what you are eating for a week and the time that it happens. I would also get tested for dietary problems like gluten intolerance, lactose intolerance etc. POTS can cause you to go to the bathroom a lot, but if it's happening every morning, it might be something else.
  19. What level of compression does she use in her compression hose? Has she tried abdominal compression? Strengthening the leg muscles also helps with pooling.
  20. Hi, check with your doctor, but I would be worried more about blood pressure and blood volume than pulse pressure.
  21. A normal BP is considered to be anywhere in the range between 90/60 to 120/80. Your doctor can advise best, but It seems your BP is on the low end of the normal range. I think most doctors would not be concerned with this. I had 90/60 BP all my life before getting dysautonomia and many of my friends and family have this BP and they don't have dysautonomia. With dysautonomia there is a wide swing in HR and/or BP between lying and standing up.
  22. Yes thank you for suggesting the forums. That is probably where I should start my research.
  23. I needed the mouth guard anyway for grinding my teeth. My dental insurance rejected coverage when it was submitted earlier this year, so I was going to use my flexible spending account for it next year. Now that I got the prescription I will try to submit under health insurance. The cost without insurance is $750, which isn't that bad anyway and with FSA, it's 1/2 that, and it will kill two birds with one stone. I think everyone's insurance works differently for the CPAP. I have decent insurance so I think it would be covered, but I am not in a rush. I just have too much going on throu
  24. Thanks everyone. My doctor said most patients get the CPAP and don't bother using it. My doctor suggested getting mouth guard - I grind my teeth and needed the mouth guard anyway, and when it is designed a special way it stops sleep apnea. I think there are other ways of treating too. I need to sit down and do some research. Dysautonomia is about not enough oxygen to the brain. When I am tired my dysautonomia is worse, so I think treating this can only help.
  25. Many things can cause diarrhea just after eating including food poisoning, IBS, Chron's disease or lactose intolerance (if you eat lactose). I sometimes get it from eating cheese.
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