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yogini

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Everything posted by yogini

  1. Hi all. I ordered the Healthmate Forever brand, a mid-priced model, for around $50 or $60 from Amazon. The first couple of times I used it I felt like it made me dizzy, but probably just me being paranoid. Anyway the dizziness is gone now. There are maybe 15 or 20 levels of intensity - but I need to start off slow because I can't tolerate the higher levels yet. I think I will increase the intensity over time as I get used to it. I do like it already and my shoulders are feeling looser already even at the lower level. I use a heating pad or heated pillow, do yoga, and self-massage and
  2. Yes, I lost some friends. Two very good friends in particular. In retrospect those weren't the best friendships for me anyway. I select much better now. Good riddance to them! You do have to cut your friends ad family a little bit of a break. It is hard to know how to deal with someone with chronic illness. Even the people that sort of get it don't really understand what it feels like. So I would get a lot of - oh do you want to go to dinner somewhere 1 hour away - and of course it was easier for me to be nearby, but they didn't understand, couldn't step into my shoes. That was fr
  3. I was first prescribed metoprolol and couldn't tolerate it so I switched to atenolol. After that I tried a couple of other beta blockers without problem, so I think for me metoprolol wasn't the right drug. This might be true for you too, or not. I encourage you to speak with your doctor. Also, can you get atenolol from mail order, etc?
  4. My HR dips very low at night. I can't do cardio at all - I can't run or do the stair master without triggering my POTS. I was told by doctor that my low HR at night was "normal" and nothing to be concerned about. I don't feel sick at night, so I have not been worried about this symptom. In normal people low HR is a good thing, but in dysautonomia it is a symptom. Dysautonomia affects HR - and it can go in either direction, up or down. Low HR during waking hours is more common in neurocardiogenic syncope, though it can also occur with POTS. If a person has both low BP and HR, it can m
  5. I do believe some people with dysautonomia take them, but it is best to ask your doctor or pharmacist,
  6. Hi Alex, I see that the Quell is about $250. I am going to start with one of the more affordable versions. I'm thinking Healthmate Forever brand. I have a gift certificate to Amazon and have been thinking about home TENS for a while so I figured this would be a good chance to try it. If the first machine works and I feel like I need something more, I will go for the Quell. I have trigger points around my neck and shoulders, not fibromyalgia, so I hope that the cheap version will do the trick, lol!
  7. Thanks so much for the reply. Glad to know it helps. Which brand is your machine and about how much did you spend for it? I'm glad you told me about the neck as I was planning to use it there...but also on my shoulders.
  8. Yes, it sounds like a doctor who's experienced in treating dysautonomia would be better able to help you.
  9. Has anyone ever tried a TENS unit to help with their pain? I have a ton of neck/shoulder/coat hanger pain. You can buy a TENS unit on Amazon for like $25, and they also have more expensive models, but even cheap ones have very good ratings. Wondering if these are worth it and which brands/models? I have had TENS in the doctor's office when I went to physical therapy years ago for my shoulder and it helped..
  10. HI, i am not sure I understand the numbers you posted. Blood pressure is usually a systolic over diastolic number like 120/80 or 90/60. One single test on any given day doesn't necessarily mean that your medication has stopped working. You may be having a flare up as we all do from time to time even when we are on meds. Sometimes the flare ups last for weeks. There are so many medications and treatments. You may want to read the diner main page which describes many of them. The treatment is really individual so the best thing is to find a good, knowledgeable POTS doctor who can help y
  11. I've tried a bunch of different salts and I didn't notice a difference, lol.
  12. Everyone has a different way of thinking about dysautonomia. In my case it wasn't a simple Imbalance that can easily be fixed through yoga, diet etc. I think of it this way, if you have bad vision, you can eat all the carrots you want and take supplements, you will still need glasses. If you have diabetes, you have to take insulin, etc.
  13. You sound just like me. My dysautonomia got better. I was able to resume work and have a mostly normal life as long as I stay within limitations, The Dinet website has a ton of great information, so I would start there. You can read about medications and doctors in your area. Finding the right medication was what helped me get back on my feet, then I exercised and my recovery built on itself. I no longer need meds.
  14. Does your electrophysiologist know you have vertigo? If you are diagnosed with vertigo and you feel dizzy, that dizziness might be from vertigo and not POTS. That could explain why your numbers are fine when you are feeling dizzy. Separately, it is also possible to feel dizzy with dysautonomia while your HR and BP are normal.
  15. I think many/most of us screw up from time to time. Each medication is different, so you do have to call your doctor or pharmacist. You can buy a 7 day pill box - available at any drug store - so that you lay out your medications for the week. That makes it easier to keep track.
  16. 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.
  17. 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.
  18. Have you tried compression stockings?
  19. 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!
  20. What is your blood pressure resting and standing?
  21. 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.
  22. 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
  23. 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....
  24. 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.
  25. 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.
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