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yogini

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About yogini

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    New York, NY

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  1. I guess my question is would MCAS cause seasonal rashes? I don't know too much about it, but thought it was something that was year round.
  2. I agree with this but would take it one step further. On websites like WebMd they have a symptom checker where you enter in your info. They can guess what you have from a combo of symptoms. It may or may not be in the right direction but it gets you thinking. I would also read about the particular steroid she was given, the side effects from stopping it and from stopping steroids generally. The best thing that patients can do for themselves is to be extremely informed and take of their own health and not wait for doctors to. Your friend is very lucky to have you. You can assist her, but ideally she or someone in her immediate family could do this. I am saying this only because a friend tried to help me when I was first sick and totally guided me in the wrong direction - not on purpose, but because she didn't quite understand what was happening to me. At the same time my parents were looking into it, and they figured it out fairly quickly because they experienced with me first hand.
  3. From tracking my symptoms I know my own headaches are related to low blood pressure - when I drink a big cup of soup and a lot of water I feel much better. At other times I have had headaches from high blood pressure due the medication I was taking, which I had to discontinue. I am so attuned to these headaches now that I know what the cause is and how to treat it. The low blood pressure headache is more of a dull pain than the throbbing pain I get at certain times in the month. I would check with your doctor for a recommendation. Your headaches might not have to do with POTS at all - and the dr can best help figure it out.
  4. get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia.
  5. If you are interested in biofeedback, it might be helpful to look into a more formal method that has been researched and shown to be effective. There are machines you can buy, apps for your phone, etc. There might be some info on posts in the forum - but better info out there on google, etc. The idea is that if you do the same exercise over the long term, your HR lowers a little in average - and then you can also use the same techniques to help manage in a flare.
  6. It's complicated. Your doctor could best explain the mechanism but usually dysautomia symptoms tend to act up when the brain isn't getting enough blood, which and happen in any position. Both the HR and BP drop during sleep, combine this with dysautonomia, not a great mix. Some patients even faint in their sleep.
  7. Everything you described is fairly common including waking up from a dream to have all of those symptoms and more in the middle of the night. You mentioned an echo - make sure you get a full cardiac workup - stress test ECG, etc. Through these tests your cardiologist can tell you if you are at risk for a heart attack and when to go to the ER. Most of us who have been cleared have been told there is no need to go. CBD can lower your blood pressure. Have you checked with your dr whether it makes sense for you? Are you measuring your blood pressure and HR when these symptoms happen? Drink water + salt at night and first thing in the morning has helped me deal with the morning symptoms caused by low blood pressure and dehydration in the morning. Hope you feel better soon.
  8. When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic. I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal.
  9. A risky surgery with neck damage and no guarantee for improvement doesn't seem like a great option. If other people are starting to try the surgery, it might be better to let them be the guinea pigs. Not sure how long you've had dysautonomia but most people do improve over time. It takes trial and error - sometimes years of trying different things - but surgery isn't your only option.
  10. Glad you are under the care of your doctor and will be getting meds. High blood pressure for a few seconds probably isn't as concerning to doctors as sustained high BP. Also it is a normal response to have BP increase during activity - so that might not be the best time to measure.
  11. It's been studied. See for example here: https://www.ncbi.nlm.nih.gov/pubmed/19015909
  12. You are correct in questioning whether florinef makes sense for you. It is not an easy drug to go on or go off. 6 weeks seems like a long time, but it might make sense to just wait. Personally if I had high BP and I were just starting my journey, it wouldn't be the first drug I'd want to try.
  13. Thank you! I have been looking for something which isn't an aerosol and which isn't heavy to carry around
  14. Um, the only person saying that he invented the surgery is him. You’d think they’d have at least quoted his doctor if it were true, and that it would be written up in all kinds of medical articles . Don’t think I questioned his illness or recovery in any of my posts above, so not sure why you’d ask that. 🙄
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