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Everything posted by yogini

  1. Hi, You may want to ask your doc why he gave you zyrtec. It isn't usually taken for POTS/dysautonomia - though some people here take it for other conditions. I am glad you are no longer scared about the BP. It is normal to have some high BP readings even for people without POTS. One bad reading could even be a misreading or be aggravated by your being scared. Having that kind of BP as your baseline is more of a problem, but usually even then it takes a while before you would have a heart attack, stroke, etc. - people with high BP like smokers and overweight people don't have heart attac
  2. You have to figure out what's right for you. I personally feel comfortable doing stuff on my own without checking with my dr - something like caffeine isn't a prescription and if it makes you feel better, just go for it! Honestly you may not even want to bother explaining to him. Especally because so many of us use caffeine and it's in all of hte literature too! If you couldn't tolerate it, you would know by now. I've gone back and forth with caffeine - cutting it out and using it. For me it also works best in moderation. in the morning so it is out of my system when I try to sleep. Lik
  3. I am so glad your doc took you seriously. Hope you are getting good care and lots of tests to figure things out. Maybe they can call Mayo or something for guidance. Keep us posted.
  4. I TOTALLY understand. It's like when my friends whine to me about having a cold..."I'm SOOOO sick". Try being sick every day for 6 years...they don't understand what sick is!!! Being stressed out about appearance is superficial and a luxury that few people in the world have. If the biggest thing you are stressing about is the whiteness of your teeth, God bless! I hate being sick, but it has opened my eyes that when you have REAL problems, lifes little ups and downs don't matter so much anymore. When people complain about having to work late, I think I am so grateful to be able to work.
  5. Great, we can compare notes. My appoint is for Fri, but I may have to reschedule for next week...
  6. I have had POTS for 6 yrs, by the way. I know a couple of years (or a even couple of months) seems like an eternity, but unfortunately it isn't in the POTS world. I would say the first year was the hardest, and after that things steadily improved apart from a couple of glitches in the road. But as tearose's post shows, you can have a good and meaningful life even if you don't improve. There was the article in the last newsletter about the stages of chronic illness, which I thought was so great. I think the hardest thing to get to the point where you accept the POTS, are not so troubled by
  7. Have any of you tried acupuncture for sleep? I had the chance to test out acupuncture a couple of weeks ago for really cheap. I only had 20 min, but it left me feeling really relaxed and drowsy. It didn't really help me sleep in the end, but I feel like it would if I could do it longer. My friend who used acu for her back pain said she would sleep for hrs, which sounds heavenly. It didn't seem to worsen my Other Pots symptoms either. I found an acu school near me, and I am going to try 1 hr treatments for a few weeks to see how it goes. Insomnia is probably one of my worst symptoms these day
  8. I am tons beter than I used to be and am in the process of weaning off my last med. I have tried a million different things to to get here. I changed around practically everything in my life - left a high stress, job, took up yoga, improved my eating habits, tried different meds and kept pushing myself. Some things worked better than others, but eventually I found the right combination - the best thing for me was starting yoga, then Paxil. After the Paxil I was finally able to stop my beta blocker which was making me exhausted. Then I was able to build on my physical strength and activity
  9. I don't know about your other conditions. Your symptoms do sound like they could be from POTS. What is your BP number - is more like 90/60 or 120/80? Is it dropping when standing? During the worst periods, the things that help me most are rest, compression, staying off my feet and fluid and salt loading like crazy. It takes a few days for the fluids/salt to kick in. It could even been something as stupid as the weather which is causing a flare up. I hope you feel better soon.
  10. I know many of us POTSies need that afternoon nap to recharge...and feel bad/guilty about it. This article made me happy..yay for sleep! SUNDAY, Feb. 21 (HealthDay News) -- Want to ace that next test? Try taking a mid-afternoon siesta. While the findings are preliminary, new research raises the prospect that sleep, specifically a lengthy afternoon nap, prepares the brain to remember things. Think of it as similar to rebooting a computer to get it to work more smoothly. "Sleep is not just for the body. It's very much for the brain," said study author Matthew Walker, an assistant professor at
  11. At first I thought the video was a joke. But when the scientists came on I was really excited! So great they are doing this research!!!
  12. It would be out of your system in a couple of weeks. Usually, you are supposed to taper off florinef instead of just stopping...so maybe your body is just reacting. Even when it is out of your system, it can take a while for your body to adjust. It took me 4-6 weeks to get back to baseline each time I lowered a dose of florinef...painful, I know!
  13. I am SO happy to see POTS mentioned in a major newspaper. I loved the article, though I wish they hadn't focused on migraines and memory loss, because there are so many other symptoms! Let's hope for more publicity in 2010. Potsgirl, different doctors have different opinions as to the difference between POTS/NCS/OH - glad you got a diagnoisis, though! It's so frustrating that docs STILL misread TTTs clearly indicating dysautonomia and tell people they are nomal.
  14. I can't say enough good things about Paxil. I was really scared to try it after reading some of the bad experiences people on the foum had. But it made a big difference for me, with few side effects. It took me 4 years of having POTS before I worked up the courage to try Paxil. It brought me much closer to having a "normal" life. I wish I had tried it earlier. I am actually weaning off of it now b/c I don't need it anymore. Good luck!
  15. This can be a symptom of POTS/dysautonomia. I constantly felt like I was moving when sitting, lying walking - I went through the whole inner ear thing and after 3 months it turned out to be POTS. Don't worry, though, it's not dangerous - and it rarely happens to me now.
  16. My dad has had iritis a bunch of times. It is an autoimmune condition and can be a condition of its own - not necessarily caused by anything else. He is pretty healthy other than sinus issues/allergies. Some people have an autoimmune link to their POTS, though.
  17. I googled this in part b/c I have had this in the past. Here is what i found - it's part of a migraine. http://headaches.about.com/od/asktheclinic...f/122804_1f.htm If you can, seize the day when you don't have a headache and run to the salon...or take some painkillers ahead of time.
  18. Funny, we are all so different. I can't sleep enough!! The more I sleep the better I feel. Unfortunately I have lots of trouble sleeping, so 12 hr nights are few and far between.
  19. I know, LOL. I keep laughing when I think about that quote. I'm going to add it to my Dinet signature!
  20. Well, my dr doesn't think it's anything serious, such as DVT or congestive heart failure. He confirmed there is some slight swelling and that it doesn't look like a foot injury. He told me to keep my foot elevated and to cut down on salt (which I am NOT going to do). He said he thinks it will either (most likely) go away or get worse, in which case we can do further tests. He did order a blood workup, which I won't have time to do til next week. He ended by saying "There is always something slightly wrong with you and we can never pinpoint the cause." Well HELLO...isn't that the story of
  21. Thanks. The swelling is slight. The only reason I can tell it's swollen is because my right shoes are a bit tight. It is a little numb now that I think about it, but it may be because I am obsessing! It's hard to tell about redness - my feet are always a little red due to POTS. I spoke to a dr friend who thinks it's probably a sprain. I have a drs appt this afternoon and will report back.
  22. Hi. I just realized that my right foot has been swollen for a few weeks. I bought a new pair of shoes that seemed tighter on the right side. Then last night I wore another pair of shoes that felt tight too...and realized it was my foot and not the shoes. My foot doesn't hurt at all. I googled to see what might be causing this, and I saw deep vein thrombosis as a cause. I was hoping it was more like a stress fracture or something. Now I am freaking out. Do any of you have this symptom? Of course I realize this the day before I am leaving on a work trip too. Even a stress fracture would n
  23. This is a good article. I would be worried about the caffeine and the long and short term side effects that seem to be unknown. Some people have had bad reactions and those of us with POTS seem to be extra sensitive. On the other hand, maybe it doesn't hurt to try. At worst you may feel bad for a day or two, but at least you will know! http://www.cnn.com/2009/HEALTH/07/14/energ...ents/index.html You can also read some of the reviews on Amazon.com: http://www.amazon.com/gp/product/B000T3HX1...SG5G0DNZBNRQCP8
  24. POTS shouldn't affect WBC. It can affect body temp and cause low grade fevers, but it is more likely that whatever is causing the high WBC is causing the fever. Anything else going on in your body could trigger a POTS flare up. Did they give him any kind of antibiotics or anything to treat him? Hope he's feeling better.
  25. I use broth to keep up my BP. It's packed with salt and hardly any calories. If I have a couple glasses of water after, it gives me a burst of energy. I don't mind Gatorade - I just don't like the sugar...and, though it's better than drinking plain water, I don't think it has enough salt to help....though some people may disagree. I can't stomach the yelllow regular gatorade. I don't mind the red, purple or lemonade flavors. I think Powerade has less electrolytes than gatorade and G2 some of the other drinks have sugar substitutes, which I didn't really want either....bah humbug!
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