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yogini

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Posts posted by yogini

  1. A lot of people have posted about POTS and the effects it's had on their relationships. I am really hurt by someone who was one of my best friends for the past 10 years.

    Before I got sick, we spoke a few times a week, and I have heard from her only 3 times in the last 9 months. She actually came with me to the ER when I first got sick and stayed over my apt, and after that I didn't hear from her for 2 months (and then it was only to tell me about her vacation!). I just don't think there is any justification for not emailing or calling me at all during this time. The weird thing is that both of her parents passed away within the past few years, and her other friends kept telling me what a comfort I was to her during this period....

    I just got an email from her out of the blue asking if I would be going to an event next week (which of course I can't go to because I am sick). Part of me wants to confront her and ask her why I haven't heard from her, but the other part of me just thinks I shouldn't waste my energy. I hate to thow away what was once such a great friendship. Also, I am wondering whether I'm just being too emotional about the whole thing. I would appreciate any advice!

    Thanks,

    Rita

  2. I have an automatic Omron BP monitor at home. I've heard the manual ones are more accurate than the automatic, but I don't know how to operate the manual ones! The BP monitor also measures heart rate, but the HR measure is not that reliable.

    I also have a separate Polar wrist monitor which comes with a strap to wear around my chest. This has an ECG accurate heart rate. I have bad of tachycardia, so it is really useful that I can turn it on and get an exact reading of my HR at any time. It helps to calm me down when I think my HR is high and it actually isn't :P , and also provides helpful info when I am actually having tachycardia.

    I got them both at drugstore.com. Amazon.com also has a good selection too.

  3. Beverly,

    I am SO glad Nicole is trying the beta blocker, because it may help with her high HR and BP. (I have had a few episodes of high BP over the past month, and it is miserable. I can see why Nicole is tired all the time, because the fatigue I have felt is unbearable.)

    I was initially given a beta blocker (lopressor) after my first tilt table test, but I stopped it after a couple of days due to the side effects. A month later I was rushed to the ER with tachycardia, and was prescribed another beta blocker, atenolol. I felt horrible for the first week/10 days that I tried the atenolol. My legs felt like lead, I had a headache and nausea. But I hung in there and it went away. This has been a lifesaver for me, because my HR is otherwise out of control. Many of my friends and relatives have tried beta blockers, and they all had a rough time at first. I know how hard it is when you're already feeling terrible to add something new to the mix. I really hope Nicole is able to stick with it and wait it out. I'll keep my fingers crossed for her.

    By the way, I take a 1/2 pill in the am and 1 pill at night. My doctor told me to take the larger dose at night, because the side effects will happen when I'm asleep (if I can sleep, that is!)

    Best wishes,

    Rita

  4. I know how you feel, because I have been to many doctors who can't seem to make me feel any better. I saw Dr. Low at Mayo in Sept. (Mayo rejected me too and I got in through someone at work). He is very knowledgeable, but he didn't really have much more to add than my doctors at home. Unfortunately, I don't think there is any magic cure for POTS and no amount of $ can make it go away. Mayo told me that, even with meds, I should still expect to have symptoms. Hopefully, the symptoms will gradually get better with time. I feel lucky to have the hope that this will someday go away.

  5. Radha,

    I know it's really frustrating to get negative test results of any kind. You are obviously not well, and I'm glad you are getting some tests done now. Think of it this way, a negative test is one less thing that's wrong with you and it narrows the things that are left to rule out.

    By the way, I think one of the articles that briarrose had posted last week mentioned a dr. near Syracuse that had done some research on low blood volume. Thought you might be interested.

    Good luck,

    Rita

  6. Regular ECGs are generally done while lying down. This shows the heart's structure, and a structural problem should show up even if you aren't standing. I had an ECG/stress test, and that was done on the treadmill. I think this shows blood flow in addition to heart structure. I am not sure if there are any other types of ECGs which are done while sitting or standing.

    Good luck,

    Rita

  7. Very blue,

    My POTS was probably caused by an ordinary stomach virus which lasted for about 4 or 5 days. I had the virus about a month before I got POTS. (January 9 was the virus and Feb 17 was the onset of POTS) We had sub zero temps in NY that week, but I also had sushi so I am not sure whether it came from the weather or the food. During the period in between, I felt kind of tired but I was able to maintain my crazy social and work schedule.

    I think a large % (maybe half) of POTS cases are caused by a virus. So, if you don't fall into the other categories (pregnancy, congenital), a virus could well be your cause. I don't think there's any way to test for it, because it would be out of your system by now. The body just takes a really long time to heal. I've already had this for 9 months, and have been told it would take another 6-12 months to get better.

    -Rita

  8. Jessica,

    That's really scary that your heart was beating so fast. You did the right thing by going to the ER, and don't feel guilty about taking the meds either. You're making the best out of what life has dealt you, and your illness is not your fault!! It's great that you have your parents to support you through this.

    By the way, sometimes when I get dehydrated and can't bring myself to eat or drink, I suck on crushed ice. Its a good way to trick your body into getting some water, and it seems to help with the nausea too.

    Also, I want to add don't try to push yourself. Things like Halloween may seem important, but you will have a dozen other Halloweens with Ethan. You should rest as much as possible and exert yourself only when necessary.

    Please take care of yourself and feel better soon,

    Rita

  9. Gena,

    On my first TTT in March of this year, my heart rate went to 150 in 10 min and I vomited. Since then I have had a few other TTTs (because I have gone to other doctors who wanted to retest me). I was on medication during these tests and have "passed" all of them, even though I am nowhere close to normal on a daily basis. I am grateful to have the first TTT, because it is helpful "proof" that I ever had POTS. The doctors still see the tachycardia and BP drops, but they tell my condition is under control b/c of the meds. But I have the same question as you - why do I feel so awful if my condition is "under control"?

    I also went to Mayo in Sept. and my autonomic tests (sweat, valsalva, etc.) were normal. When Dr. Low told me my autonomic nervous system was fine, I pulled up my pant leg and showed him my bright red feet and asked why they were red! He confessed that the tests only measure autonomic neuropathies if they reach a certain level, and that the level of my problem may be too small to show up on the test. Since my POTS was probably caused by a virus several months ago, he thinks that my body is healing itself. If yours was caused by a virus, this may be why your test came back normal.

    -Rita

  10. I have some heated herbal packs which I use every day, one which I got at Bed, Bath & Beyond and the other from one of those carts in the middle of the mall. The BBB one was only $10, but it doesn't stay warm as long. The mall one is awesome, and it's made by heavenstherapy.com. I want more products from them, but I'm too cheap to pay shipping and too weak to go back to the mall...

  11. Thanks, everyone! I slept a little better last night and am counting the hrs til the weekend.

    Emily, I get that same feeling where I feel like enough blood isn't going to my head. I find it's worst when I am standing still and it actually helps me to move around a little.

    Tearose, where do you live in Westchester? Gayle, where did you live? I grew up in Dutchess County near Poughkeepsie.

    Merrill, thanks for the tip about the bathroom - I'll have to check it out as soon as I'm feeling better. I'm really confused about the medicine thing too. The docs think I am getting better and the meds aren't that good for me. I realize now that I still need the meds, but I can't seem to get back to the somewhat stable place I was with the meds a couple of months ago. The worst part is that I don't really have a doctor that can walk me through how to fix things. ;)

  12. Merill,

    Thanks wishing me luck, I'll need it. Funny that you mention the Marriott, because I used to sneak in there to use the bathroom before I worked in this area. It was a good clean option in midtown, but I think they locked it up after 9/11. :unsure:

    I went to Chicago a few yrs ago when my sister was looking at schools. We shopped and ate and had a great time. Guess I am a city girl at heart!

    -Rita

  13. Danelle,

    I just wanted to say that I was really sorry to read your post. But you have a great attitude in light of all that's happened. Since most people are denied on the first try, it's a really good sign that your case worker said you did better than 90% of the applicants. Though it may take some time, I am sure your perseverence will pay off. Hang in there and best of luck!

    -Rita

  14. Gayle,

    That's the same feeling I'm getting. You're right that it does disapear, though. I'll have to keep that in mind. For some reason I've been having the feeling every day this week, and so it seems worse than normal. Today I didn't have any caffeine or sugar (I am SO craving a cookie right now) and my HR is still high sitting down. Hopefully this is just a phase that will end soon.

    I'm just bracing myself for the next couple of hours until I have to go outside and catch a cab around the corner from the nation's busiest intersection! Lucky me! Usually I take the bus, but I need to get stable before try that again... :unsure:

    Thanks,

    Rita

  15. Thanks for the responses. I think I just needed people who have been there to tell me it would go away soon! It's easy to see that when I read other people's posts, but hard to believe when it comes to myself. :P

    I am looking forward to getting some rest over the weekend. I think we gain an hour, but I always get confused about that... :unsure:

    P.S. Julie, you're right, traffic in northern NJ is the worst...

  16. For the past 3 or 4 days I have been unable to sleep at night. I know a lot of you suffer from insomnia, but normally I sleep OK. I wake up once or twice, but fall back asleep. I have a strange nervous feeling which is keeping me up, almost like my body is secreting a hormone which makes me anxious. It feels like it is coming from my stomach, if that makes any sense. I've had increased dizziness and tachycardia for the past week, so my doctor agreed that I should increase my beta blocker by 1/2 pill. I did this on Mon, but it hasn't seemed to help. Just now at my desk I felt funny and watched my HR go from 85 to 130, while seated. Fortunately, it came back down again.

    I am not under any particular stress right now, other than that I have been going through a bad POTS spell and can't seem to adjust my medication. (The other stress is that I have to catch a cab in Times Square afer work everyday, and you can imagine how nervewracking it is in this state!) The doctors tell my condition is under good control and that I should try to go off my meds, yet I can barely walk and keep having tachycardia attacks. I don't consider that "good control".

    I'm thinking of eliminating caffeine amd cutting down on sugar, but I would love to hear from anyone who experiences this symptom or has any ideas on what to do. Thanks and sorry for the long email.

    -Rita

  17. Tearose,

    Mayo told me to go to the gym and use the leg and ab weight machines. Since I'm not quite ready for this yet, (lol!) I bought adjustable ankle weights. I do leg lifts (keeping the leg straight w/o bending knee) lying on my stomach, back and sides, and leg kicks and circles lying on my sides. I mostly got the exercises from my pilates DVD, I just added the weights to make it more effective. Since everything is lying down, I haven't had any symptoms. You can do the same exercises w/o weights if you're just starting.

    Good luck,

    Rita

  18. That's really awful, Lisa. At least it explains some of your symptoms, though. Since you can't reach Dr. Grubb, please make sure to tell the neuro about your meds tomorrow (if not today)! I am not sure about aderall, but florinef raises BP.

    Best wishes,

    Rita

  19. Welcome and sorry your daughter is going through such a bad spell lately.

    You may want to check out the "What Helps" section of potsplace.com, as well as the physician's list to get an idea of treatments you can pursue and doctors in your area that might be able to help. High salt and compression hose may also help if she hasn't tried them already.

    I think a lot of POTS patients feel better sitting down in the shower. The hot water lowers my BP and makes me dizzy, so I generally sit during my bad periods. Others on the forum have experience with stomach pain and can hopefully offer advice.

    Hope your daughter feels better soon.

  20. Tearose,

    Mayo told me that exercising the leg and abdominal muscles is supposed to help heal (or compensate for) the damaged nerves. The nerves control the constriction of blood vessels in an upright posture. When the nerves don't work, it may cause pooling in the legs, low BP, tachycardia and fainting. Stronger muscles will pump more blood back to your heart and reduce these symptoms. They said it takes a few months to see the benefits of the exercises, but I figure there is nothing to lose.

    -Rita

  21. I've always had temperature issues, especially the cold. But it's gotten much worse lately. I alternate between sweating and freezing/goosebumps at work, even though the temp is always set at 70. Lately I've been wearing my winter coat inside to keep warm, which I am sure looks ridiculous. My temp tolerance is worse when my POTS is flaring up, so it must be related.

  22. I have been really lucky in that the people at work have been very patient and understanding. But when I have an attack and have to sit or lie down in the middle of the street, store, etc., I just say that my heart sometimes beats too fast and I am resting to calm it down. That seems to work well, and people have mostly been much nicer than expected. (Once I had to lie down on the bus and asked an elderly lady to tell the bus driver, I got berated for not saying please! But fortunately that's been the exception.)

  23. I had severe dry eyes when I first got POTS, and I have read (although I don't remember where) that this is a symptom. It could also be a side effect of any meds you are taking. I used eye drops (Refresh Tears?) for a few days and it went away, but I don't have contacts. I agree with Katherine about talking to the eye doctor.

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