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yogini

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Everything posted by yogini

  1. I am better now. Looking back I was more scared than I needed to be. It is important to be cautious but also important to push yourself a little, Yes activities triggered my symptoms, sometimes a lot. I didn't wind up in the hospital. Sometimes I had to sleep or rest for a few days. No activity made me permanently worse. And It was always worth it. Also practice helps. Go to a neighbors house for 10 minutes or run quick errands to build your confidence.
  2. I don't have trouble swallowing but I think it has come up in the forum. You might want to do some searches. A lot of times people have co-conditions with dysautonomia that account for the symptoms that can't be explained by POTS or NCS. I think that would be more common than MSA. Also, my understanding is that in MSA atrophy is usually gradual over a long period of time. I think you are seeing a very well-regarded docotor and so you are in the best possible hands to figure it out. Good luck. Keep us posted.
  3. Have you tried compression stockings?
  4. It takes about one month to get adjusted to flornief. If there was a hurricane, it would affect your POTS a lot and I wouldn't assume it was the florinef making you sick. I am generally healthy now. I feel a rainstorm a day or two before. Can't imagine a hurricane. Hope you are safe!
  5. What is your blood pressure resting and standing?
  6. There are different opinions on this, but the general diagnosis of dysautonomia is a very helpful start. Many of the treatments of these conditions overlap. When I got sick I kept a diary of my HR and BP for several months. If you read the DINET main page, with this info you will get a better sense of which category you fall into and which meds might help your specific issues. If you have high BP you might need a med which lowers (and doesn't raise!) BP, etc.
  7. My general advice is figure out which foods work for you, that you like the taste of, that don't make you sick. Read packages of foods you like. Pick the ones that are high in sodium. I need a TON of salt to function in my worst times. I don't love processed foods (which are the ones that have the most salt) - for multiple reasons. Many are processed and high in calories. I like carbs, but when I am sick, too many carbs - chips, pretzels - make me worse. The sugary drinks with artificial colors and corn syrup - though they work - are also a turn off. And I really don't want to change m
  8. Hi, not sure where you are based, country/city? Generally a cardiologist or neurologist might know about dysautonmia. There is great info and also a doctor list on the DINET information page. Doctors who aren't on the list often don't know much about our condition....
  9. Have you been diagnosed with both dysautonima and an ear condition? i got misdiagnosed with an ear condition but turns out I had POTS only.
  10. You may want to search on the forum. This topic has come up many times. Most can safely fly and most who have posted this question have done fine on their trips. The key is too be extra prepared - have everything you can need with you on the plane - medications, water, etc - and be well-rested. Most do better than expected. It isn't unusual to crash after a trip. But it is usually worth it.
  11. There are a few ways I have dealt with this. First, my personal (non-medical) opinion is that you don't need to do cardio. And don't be in a rush. The exercise protocols are very harsh - too harsh - for many people. Build up. If you are getting sick, walk, stretch, do lying exercises on the floor. Do seated exercise. Practice standing if you can't stand for long. Build up. If you are on a bike and it is making you sick do 5 minutes or 1 minute. Your body might get adjusted and be able to build up. Experiment a bit. Stretch, warm up, cool down. Ask your doctor if you can wear compression ho
  12. HI, need some more background about your diagnosis, symptoms and doctor's advice. But it isn't unusual to have a rapid onset. And actually people with rapid onset have the best chance for recovery. It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.
  13. Medications have bene invaluable in getting me back on my feet. I wouldn't discourage anyone from taking meds, but it is very important to read the side effects and interactions. POTS it is also important to research the impact of these drugs on POTS patients, since there can be additional side effects. A natural supplement has the same potential for side effects as any medication and needs the same research, plus natural supplements aren't regulated or studied, so you can't be sure what's in them.
  14. IF putting your feet up helps, have you tried compression stockings? They help with pooling
  15. I agree with TrainBoysMom. Usually when there is a change in symptoms, there is a trigger. I wonder if it's a medication and not really a POTS flare up. i would read up on the side effects of the meds you took or are taking and also search the forum to see if other people have had bad reactions.
  16. Hi Finnmin, I would definitely ask your doctor or pharmacist before changing the time of day to take the medicine. You'll get some wonderful advice here on the forum, but always best to consult your doctor before making any changes. I believe they would easily explain any of your husband's concerns. If you take tylenol in the morning or at night - it's the same medicine, it should not be any more or less risky based upon the time of day. Beta blockers are a bit more complicated than tylenol, but it is the same concept. It should not be dangerous just because you rake it at night -
  17. As a woman, it adds a little bit of extra discomfort to more discomfort that we are already wearing
  18. Hi Vicky, I would count your pulse manually rather than rely on the fitbit, since it has been shown to be inacurrrate.
  19. Sometimes you have to try a few different beta blockers to find one that works for you. If he tries a low dose at night, maybe that would work? Also the fatigue wears off once your body gets used to the BB. With high BP I would be reluctant to try salt or compression hose unless your dr approves. Does the exercise make him sick, or does it just not help?
  20. Hi Marcus, I'm sorry you've had such a hard time finding a doctor. I think there are others on this forum from the Netherlands. Maybe it would be helpful for you to connect with them.
  21. Funny! A sandwich here is two pieces of bread plus fillings like meat and cheese, plus mayonnaise, etc. Ask your doctor, but I think it probably would not be healthy for most people to eat so much plain bread in one day. But I have a much easier time digesting foods other than carbohydrates (like bread), so I understand why bread would be a main staple. I think it is probably not POTS itself, but a co-condition which affects your ability to eat - so I hope you are able to get a diagnosis.
  22. Maybe you mean a different word than sandwich? A sandwich (in the US) would at the very least have 300 calories (often much more) and generally lots of fat. 30 sandwiches would put you at 9000 calories per day not including other stuff you eat. I would check with your doctor about your fat intake if it is outside of guidelines. Some people with dysautonomia get sick from eating a lot at once (it lowers your blood pressure) and also have food intolerances or gastric conditions, which might be factoring into to your ability to eat things.
  23. I switched to yoga and that is much better for me. I have done cardio at times, but with yoga I can walk out of a class and immediately do another activity. I don't feel depleted. Though I used to have to sleep after class, when I first started, I never got headaches, etc. like I did with cardio. And my POTS symptoms are minimal now, so it did the trick.
  24. I drink organic broth when I need salt because I couldn't find anything else that works. Hydration drinks don't have much salt and natural foods have virtually none. A higher salt diet has made a noticeable difference for me.
  25. Yes. At first I started by riding a bike for 5 minutes. Do whatever you can do. Even doing stretches on the floor is a good start. That's what I did on my very worst days.
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