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yogini

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Everything posted by yogini

  1. JR, Welcome to the board. You sound a lot like me. I have always had very low blood pressure and a somewhat rapid heart rate. My heart rate increases a lot at the littlest activities, such as rolling over in bed or drinking water. I wonder whether I have IST or POTS, but my understanding is that the treatment is pretty similar. I take florinef to increase my BP and atenolol to lower my heart rate, and they have really helped me. Did your symptoms appear all of a sudden, or have you had them all along? If your symptoms are affecting your ability to function on a day to day basis, then I would encourage you to consider seeing a POTS doctor and/or talking to your cardiologist about trying medication soon. Good luck.
  2. Grace, Welcome to the board. I agree with Merrill that a tilt table test isn't necessarily a bad idea. I had such a bad reaction to the first test that they almost had to keep me in the hospital overnight. But I'm glad I did it, because it's the best documenation I have for my POTS. And my first tilt test was the worst. The others have been relatively painless. They are always coming up with new meds and treatments, so it's probably not a bad idea to see a doctor after all of these years. As I am learning, you can always ignore the doctor (or switch to a new one) if you don't like what he or she is saying! It is a frustrating process, but you just have to hang in there and be persistent. Good luck with the doctors and keep us posted! -Rita
  3. I'm OK with the computer monitor, but can't tolerate bright lights (neon or other). I had the lights turned off in my office a week or so ago, and it really seems to help.
  4. I've gained at least 3 sizes in 8 months, so I really hear you. For me it's a combination of inactivity and florinef/high salt, which cause me to retain so much water. My friends and family claim they don't notice, but I think they are just being nice. And in any case, I notice. It's hard to deal with the weight gain on top of the POTS. I have a closet full of clothes which I can't wear. It doesn't make me feel very good about myself at the moment. And my Drs. tell me that I should not worry about the weight gain. (easy for them to say) I have started mild exercise which I am hoping will help. And I am trying to watch what I eat, but it's hard when food is one of the only things that makes you feel good. So hang in there Herdswoman, you're not the only one.
  5. On the news they said that many people in his condition get bedsores and die within the first year, and it was really a miracle that he was able to survive so long. He and his wife deserve all of the credit for their perseverance. I was just telling my mom that whenever I get down I think about how bravely he carried himself in the face of tragedy. He was definitely a big inspiration. I am really saddened by the loss.
  6. Wow. How great that people from all over the world write on this board! Today is supposed to be in the upper 60's, so at least it will be better than the past couple of days. But I guess winter is inevitable. The worst thing is when it is cold is that they have the heat cranked up really high when you go inside. So even if I dress warmly, I start to overheat and get symptompatic as soon as I go inside. You really can't win with POTS...Anyway, it's nice to know that I'm not the only one that can't handle the cold. Thanks for your responses!
  7. It is starting to get a bit colder in NY. I have always dreaded cold weather, but this year it seems much worse. It's in the low 50's today. I wore a winter coat on my way to work and was still freezing. Of course it's going to get MUCH colder in the coming months and I am worried about not being able to handle it. I know most of us can't tolerate heat well, but does anyone else feel hypersensitive to cold weather too? Also, just wondering whether the cold temperature can worsen POTS symptoms? My heart rate increased by about 50 bpm when I was outside last night. I am guessing this is because of the cold, because it slowed back down when I came inside. (This is a bummer, because I slightly upped my florinef about a week ago. I started to feel a bit better. My BP went up a bit and my heart rate came down so much that I was thinking I need to reduce my beta blocker dose. But now I am not so sure...) Thanks!
  8. Ernie, I can relate to you. I live in New York City. I have had severe tachycardia attacks while walking on the street and/or riding the bus and I have had to lie down in the middle of the street to make it go away. So far, my attacks have come on gradually. I wear a pulse monitor watch, and when I see my pulse climbing, I call my family or friends on my cellphone to come and get me if needed. Or sometimes I just call them to stay with me on the phone until the tachycardia goes away. And total strangers have been really nice and helpful for the most part too. But I am petrified that I will faint and that people will leave me there in the middle of the street, that I will hit my head on the sidewalk, get mugged, etc. I just ordered a MedicAlert bracelet, and I think that will help to ease my fears. But I think I have a milder form of POTS than you. I have not fainted yet (knock on wood)! Since you faint so often, I really am worried about something happening to you when you are by yourself. So I think that it's good that you are mostly staying home, even though I know it's really frustrating and boring. As your acupuncture and other treatments start to work, you can slowly develop the confidence to go out by yourself. Hang in there!
  9. I just started wearing compression hose a couple of weeks ago, and it I think it has been helping. (Actually, if you are interested in trying them, brightlifedirect.com is having a big sale right now) The compression hose is mostly to stop pooling in the legs when sitting and standing. I think it is less helpful when lying down. Also, how much salt are you having/day? Florinef is the drug that's most commonly used to increase blood volume for POTS patients. But what works for you really depends on your particular symptoms. From your recent posts, it sounds like you have some other health issues in addition to the low blood volume which are probably contributing to your weakness. I hope you feel well enough to travel to a dr. soon. Best wishes.
  10. Jessica, That's SO great about the new Dr. It's so hard to find anyone who's both nice and competent in POTS, so you are very lucky! I would echo Sue's comment about reducing the meds. Twice this year docs have told me to reduce my meds because I was "getting better." When I reduced my florinef from .2 to .1, I seemed to do fine for 2-3 weeks, and then all of a sudden I totally crashed. The last time this happened was mid-August, and I am just starting to recover now, and only because I increased the florinef again. Not to say that it won't work for you, but I'd recommend doing it REALLY slowly, maybe 1/2 pill per month? Good luck and (of course) keep us posted! I am going to try again early next year to reduce my meds, and hope to use you as my inspiration! -Rita
  11. Hmmm. Not sure what could have caused your improvement during vacation or your relapse after returning. I think Gena had a good point that altitude and climate are big factors. Also, there could be things at home which are consciously or subconsciously stressing you out which went away while you were on vacation. I would think these are more likely causes than the water or air, but who knows. About feeling worse at work, one thing they suggested to me at the Mayo Clinic was putting my feet above my heart (ie. up on my desk) for 40-60 minutes every afternoon, without interruption. Blood pools in your legs when sitting at work all day. I have been doing this for the past 2 weeks and it really seems to give me some energy and also lower my heart rate. If you are able to try this, it might help. Also, I just realized how much the lighting in my office has been aggravating my condition. I had the lights turned off yesterday, and that seems to help too.
  12. I had really bad tremors a few times when I first got hit with POTS in February. My legs and arms would shake like crazy and my teeth would chatter. I was afraid I had epilepsy. The theories expressed by ramakentesh and POTSparent make seem to explain my tremors. Since I have started high salt, tons of fluids and florinef my hydration and blood pressure have improved. I rarely have mild tremors, but they are barely noticeable. But everyone is different, and for some of you it may be caused by your medications.
  13. I think many international health agencies support the iodization of salt to prevent iodine deficiency. Iodine is essential for the production of thyroid, and also helps brain development and function. My dad has an underactive thyroid, so I am concerned about being prone to it. But maybe I will use sea salt some of the time. Heaven knows my high-salt diet allows room for use of both!
  14. Beverly, Have you noticed that the celtic sea salts are helping Nicole? I am also considering them. The one thing that I am worried about, though, is getting enough iodine. Regular table salt is iodized, but the celtic sea salts probably aren't. Opus, do you take iodine supplements? Thanks, Rita
  15. That's really awful that your doc isn't responsive, and I can totally relate. But don't give up on your dos. My docs aren't very responsive either, so I or my parents just keep calling them every, or multiple times a day, until they respond to whatever I need. At the very least, they should be able to advise you over the phone about whether to up your dose of cortef. I need to get new Drs. one of these days. What has worked to bring up my BP in the past is florinef, but I am not sure whether that would work for you. I am still thinking about the Mestinon, which was recommended to me by Mayo. Iwill post an update when I decide.
  16. Good question! I was wondering the same thing when I saw the article on today's front page abou the flu vaccine shortage. I am leaning towards getting it, because getting the flu would probably aggravate the POTS symptoms by making me dehydrated. I got one last for the last 3 years w/o any problem, but my POTS only started early this year. Would love to hear from anyone who took a flu shot while having POTS. Thanks. -Rita
  17. Here is a post from last week on the topic. I haven't started taking it yet. http://dinet.ipbhost.com/index.php?showtop...211&hl=mestinon Radha, you also asked about midodrine. What medications are you currently taking? -Rita
  18. Thanks everyone for your responses! I want to start off with something I can do at home, at least for the first few weeks. MightyMouse, I am really excited about trying the resistance bands. It gives me hope that I might be able to do something constructive which may actually improve my condition. I am going to call my aunt who is a physical therapist, to see if she can suggest some exercises. I also did some searches on google. I am posting some links below, in case anyone is interested. (The Thera-Band one has tons of exercises, instructions, etc.) I'll keep you posted on how it goes! http://thera-bandacademy.com/default.asp http://www.amazon.com/exec/obidos/tg/guide...1778700-6885460 http://www.hgtv.com/hgtv/ah_personal_care_...2973127,00.html http://www.findarticles.com/p/articles/mi_..._17/ai_80309805
  19. I was told by a doctor that I should try weight training twice a week for my legs, and that this would significantly help my condition in about 3 months. This seems like a very long time, but at this point I am ready to try anything. I got some ankle weights, so I figure I can start by just flexing my legs with the weights. The doctor wants me to go to the gym and lift as much weight as possible, but I think I feel more comfortable starting out at home with something small. I'm womdering if anyone has had any postive (or negative) experience with resistance training. Right now my only exercise is walking around in my neighborhood, when able. When I was feeling better a couple of months ago, I did some pilates and sit-ups, and this seemed to be OK (at least it didn't hurt). I even managed to ride an exercise bike a few times, but then they told me to lower my meds and my heart started to race out of control. So now I am pretty much de-conditioned and starting from scratch. Anyway, just wanted to get some advice on types of exercises that might be helpful. Thanks, Rita
  20. Jessica, Congrats on getting your insurance! I have looked into this beacuse I need to switch insurance at the end of the year. Whether or not your condition is covered depends on your state's insurance law, as well as the specific terms of your insurance policy. Unfortunately, in some states, a pre-existing condition would also include any condition for which a prudent person would seek treatment, whether or not you are actually getting treatment at the time that you get the policy. I am not sure if you feel comfortable calling the insurance co., but this would be the best way of finding out whether the other conditions would be excluded. (You might be able to do this without specifying your name.) Your state's insurance law should be available online, and your state insurance office might be helpful too. -Rita
  21. Friday, I just wanted to add that I went to three different neurologists in my area, all of whom said that my nervous system is perfectly fine. One of them insisted I had an inner ear problem because I felt dizzy. But I clearly have POTS (which has now been confirmed by 4 doctors, including Dr. Low). I think the problem is that most neurologists specialize in the central nervous system and don't know much about POTS or the autonomic nervous system. So you may want to get diagnosed by someone who has experience in treating POTS. potsplace.com has a list of physicians, so hopefully there is one in your area.
  22. Here is a link to a discussion on beta blockers which you might find helpful. http://www.ndrf.org/NDRF%20Patient%20Handb...A_pp189-216.PDF I take atenolol. Before I started it, my pulse would easily go to 120 or 125 when standing and/or walking and would sometimes even go to 150 or 160. I had a couple of really bad tachycardia attacks which landed me in the hospital. The lowest dose of 25 mg as helped to bring my heart into control in conjunction with florinef. Now that the Drs have tried to reduce my florinef, I have upped the dose to 37.5 mg. The first week I started it, I felt really tired and breathless and it added to my dizziness. But the side effects totally went away after about a week, which I think they do for most people. And now I can't function without it. I think the beta blocker you mentioned Corgard is also known as nadolol, which a few people I know have had good experiences with. However at the Mayo Clinic they told me that inderal (a non-selective BB) is the most effective for POTS patients. They didn't want to change my medicine since I am already used to the atenolol (which is selective). There is more info in the link I posted. Let us know what you decide.
  23. Do you have any of the other symptoms of POTS? (If you go to potsplace.com and click on "Symptoms" you will see the common symptoms) What is your blood pressure? If your heart is racing shortly after you stand up, there is defintely a chance you have POTS and you should talk to a cardiologist as soon as you can. But there are endocrine, neurological and other conditions other which have symptoms similar to POTS. So it may be better to wait to try anything until you talk to a Dr., except drinking lots of water to make sure you're well hydrated.
  24. I have always had this problem too. I have been trying to work on this for the past 2 years. Even before I came down with the POTS, I was beginning to realize that it wasn't good for my health. And it probably made me susceptible to illness. I try to keep myself occupied by doing constructive things such as reading, so that I don't have time to get lost in my thoughts. When my mind starts to race, sometimes taking deep breaths or lying down helps. It happens more when I am tired or stressed out, so I try to relax and get more sleep. Before my illness, I had a crazy work/social schedule, so I was constantly wired and running around. I realize now that if and when I am lucky enough to get my POTS under control, I can never go back to that life. (I have to find a new job, but that's another story) I'm also trying to cut down on caffiene and sugar. But that's really hard, because food is one of the few things that makes me happy these days... -Rita
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