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Lemons2lemonade

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Everything posted by Lemons2lemonade

  1. Why in the 150's? 140 should be sufficient for cardiovascular exercise? Also, isn't the beta blocker supposed to prevent your hr from getting too high by blocking the adrenergic receptors? Also, I feel like the inability of your heart to beat faster to meet the needs of the exercise would make the exercise challenging because you are doing the exercise with essentially an engine that isn't running at 100% due to the beta blocker--i.e less cardiac output. Just my opinion ~ I bet a cardio could give you a good answer
  2. Sometimes I get lightheaded but that's about it. Thought I would share to give others hope. Proper medication and continuing to stay on my feet has helped most. Each day I try to do more and more.
  3. Your family probably doesn't understand what you go through, it is hard for others to sympathize with pots symptoms and how truly awful they feel. They are probably also worried about you becoming too dependent on it. It also affects them psychologically to see you in a wheelchair. When anyone is ill maximum mobility is always a goal. I remember when I was on the hospital they made me walk every day- I hated it but it was what I needed. But just this once might not hurt. When I talked to Dr. G in Arizona, he stressed the importance of remaining mobile and continuing to push. If you decide to go without the wheelchair I strongly suggest compression socks and an abdominal binder. They make a world of difference for me. When you say you feel bad, is it nausea, palpitations, fainting feelings...? I can push through most symptoms but man the palpitations really get me.
  4. Do what you have to do to live a full life! Just don't become too dependent on it also, you could put a sign on your wheelchair that says something like " I'm a fainter not a faker"
  5. What type of steroids? I had one solumedrol bag iv for 3 days. It made me the worst I have been since getting this but at the same time, a year later I am up and moving around. Do you have autoimmune disease? I ask because steroids typically stop.the damage from occuring instead of actually repairing anything as far as I am aware. Anyhow, the iv bag gave me terrible anxiety and tachycardia.
  6. Just got back from a rectal exam with nothing found- ruled out anal fissure and hemorroids. Going to have to get a colonoscopy. Does anyone have advice for this procedure? A little anxious about the procedure and the results :/ Do they use general anesthesia for this?
  7. If laying down is supposed to restore blood flow to your body by removing orthostatic then why are we all getting numb at night while sleeping?
  8. My ssri makes me apathetic. Any advice for this?
  9. Ugh, been through it. Florinef stopped this for me.
  10. For me, it looks like a variation of 4 months to 6 months of pregnancy depending on the bloating. Nothing else swells on me. Additionally, if I push on it, it feels significantly more firm than fat almost like pushing on a water balloon. Think of menstrual bloating x 5
  11. Yes, I am still doing florinef and it did seem to need salt to activate it initially, now though, it isn't helping so much
  12. I have been putting on weight and bloating since I started my med regime. I complained to my doc about this and she recommend removing the salt. To my surprise,my symptoms got better! In fact, now if I eat something salty it makes me feel terrible.
  13. Mcblonde, the name is in the title and you can find them at jcpennys. I tried to get a smaller size so it would squeeze more.
  14. If the standard for diagnosis is postural tachycardia, i.e. tachycardia on standing, then how come everyone wasn't diagnosed with inappropriate sinus tachycardia or orthostatic intolerance? Pots is more recognized in a clinical setting now, but orthostatic intolerance is not so new. So if we did always have pots, why wasn't it recognized, including by us? The explanation should be, my heart races when I stand and I feel like I am going to pass out." That is not something a clinician would typically ignore as it is a marker for oi. At least a cardiology referral would take place. For me, i was exhibiting symptoms before 2007 and they couldn't find anything--had a lot of poor man tilts with no symptoms-- but it wasn't until 2007 to present that the heart rates became fast.
  15. Christy do you have eds? Hypermobile joints are consistent with collagen problems that can be caused by syndromes such as eds, marfans etc.
  16. I use biofeedback every day. I think it further helps pots symptoms by reducing stress. It's hard though, to imagine that you are feeling good even though you aren't. At first I used my pulse oximeter to do this, now I can tell without it. The worst things I have found for pots this far is stress and or panic.
  17. One more thing mcblonde, my ssri dose is allegedly "clinically insignificant" However, I titrated down to it because any more and I was so sedated that I wasn't even responding to people when they talked to me.
  18. Yes. Not only do they not work, they make all of the other pots symptoms way worse-especially the fast heart rate. Inhalers make many normal people's heart race. Moreover, they behave more like a stimulant and made me jittery with uncontrollable adrenaline rushes. I have used Albuterol and q-var. Sometimes I wonder if my past inhaler use is related to my pots. Onset was consistent with this. I don't have asthma, but get horrid bronchitis frequently. I also tried it to see if it would help my pots to no avail.
  19. Oh my gosh totally feel you on this! Was wondering the if any one else had it the other day
  20. My Citalopram behaved similarly. Perhaps your appetite is increasing because you are feeling better and are able to eat Carbs
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