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Everything posted by yogini

  1. Hi, I am not a doctor, but I don't believe dysautonomia is generally caused by diabetes or blood sugar issues. Though if you have any other health condition on top of dysautonomia, when your other condition is acting up it makes your dysautonomia worse. Though many with dysautonomia feel better without simple carbs - I personally need carbs - and I have trouble digesting vegetables and other more complex foods. I would not be surprised if I was addicted to carbs. When I stop them my body starts to freak out. So I don't stop them. But luckily I don't have diabetes, yet. Diabetes r
  2. Was your blood pressure too high with the florinef or was it normal?
  3. I would talk to whichever doctor you go to for your sensitivities and ask him or her to coordinate with your dentist.
  4. Did you check your HR when feeling dizzy? But in any case, it's not unusual to feel dizzy when your HR and BP are normal. BP is measured in your arm. Many people with POTS feel dizzy because not enough blood gets to the brain. It collects in our lower body because our blood vessels do not constrict enough. There are other mechanisms but this is a big one for many of us
  5. Yes, it is very common to have other symptoms even though your heart rate and blood pressure are "normal". Remember medicine like a beta blocker only controls HR and BP. It doesn't help whatever's off in your body/ autonomic nervous system which is causing the POTS and all the other symptoms in the first place. I life a pretty normal life, but I get symptoms very often and very bad symptoms sometimes.
  6. I had the walking on a slant (I call it rowboat) and also feeling foggy all the time. These symptoms mostly went away and happen very occasionally for me now.
  7. It's extremely common to have a ton of different symptoms affecting the whole body. You have had this on and off for so many years and dealt with it. It should be no worse than before. In fact, you will probably improve with treatment.
  8. This sounds typical for POTS - not necessarily hyper POTS - and symptoms can definitely change. It might even be that your body has become tolerant to benedryl. I would try to find another med to help you sleep. I use ambien very occasionally to break the cycle. I also use melatonin more regularly.
  9. I would start by counting your pulse by hand because often these watches can be inaccurate. For example any electronics in the room can interfere with the heart rate watch. I think most people with POTS have sinus tachycardia, which means our heart rhythm is normal but the rate is fast, usually under 150 bpm. The high heart rates can sometimes mean supra ventricular tachycardia, which is a different type of tachycardia which also can affect heart rhythm. The heart rates are often higher for SVT. Ask your doctor which type you have and then do some research online. It is of course
  10. Gertie, it isn't selfish at all. Most of us need all of our energy just to get through our own day. The people who try to burden you with their problems when you are chronically ill - and elderly in your case - are the ones who are selfish, not you.
  11. 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
  12. 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
  13. 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?
  14. 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
  15. I do believe some people with dysautonomia take them, but it is best to ask your doctor or pharmacist,
  16. 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!
  17. 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.
  18. Yes, it sounds like a doctor who's experienced in treating dysautonomia would be better able to help you.
  19. 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..
  20. 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
  21. I've tried a bunch of different salts and I didn't notice a difference, lol.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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