yogini

Congrats! Is it about POTS?

Also, have you checked your BP and HR when you wake up? I know many people here have gotten shortness of breath when taking a beta blocker. I don't have sleep apnea or asthma. I had SOB when I was first diagnosed, especially when waking up. But when I started on a beta blocker, it went away. I think I was getting short of breath because my HR was too fast.

Gosh, it seems like nothing ever comes easy for any of us. Sorry for your ordeal, but I am so glad you were able to hang on until the test and got the results you needed. Keep us posted on how it goes with the insurance..good luck! -Rita

Thanks everyone! I appreciate your wishes and I know you all understand how much it means to have something nice happen for a change. The cermony went well. We had to wait outside in the freezing cold to catch a cab in both directions. I wound up getting there late, which was OK because it meant less time on my feet. The funniest part was that the award (called a Cornerstone Award) turned out to be a 5 lb brick...just my luck! I was the only honoree to leave mine on the podium, b/c I did not want to wind up having a major POTS attack in front of all of those people! I did manage to lug it home somehow. I am SO exhausted, but in a good way. Well, off to bed!

I wanted to share with all of you my good news. I am getting a big award today for doing some volunteer work over the years non-profit organzations, one which provides career support to women and another which provides counseling services to children and families in need. The funny thing is that I took on more of this works after I got POTS, because the volunteer work was less stressful then the regular work I do. So if it weren't for POTS, I probably wouldn't have gotten the award! My day is already off to a good start. I put on my suit this morning which I had bought a few months ago, and the pants practically fell off. I've been trying to lose weight for more than a year and it looks like it has started to work. I have been working hard to try to get back to the old me, and things seem to finally be moving in a positive direction. I feel excited, but scared at the same time, because I know that things could come crashing down at any moment. The ceremony is tonite from 6-8. The presentation will be 20 minutes and the rest of the time will be cocktails, which means I will have to be on my feet. I am a bit nervous about the whole thing, but hoping that adrenaline will carry me through. Wish me luck!

You should get it checked out to be sure, especially if the symptom persists. But it is my non-medical opinion that many times these types of symptoms are just part of POTS. They are annyoing and frustrating, but often they are not dangerous. It is great that you can function at such a high level while having POTS - running a mile is impressive! I would encourage you to focus on the positive.

Hi Amy, Hope you don't have mono. Just so you know, my mom developed vertigo right before my parents were supposed to go on a cruise with several of their friends. She got a dr's note and they got credit from the cruise line - they just had to pay $100 to switch the tickets to another date. It took her a year to get better, but they did finally go on that cruise. So if you are stressed, you may want to think about postponing... Feel better soon, Rita

The best thing to do is check with your doctor and have an ECG (echocardiogram). For most POTS patients, if this test comes back normal, the irregular and fast hearbeats are usually not dangerous.

Great news, congrats! Your accomplishment is especially impressive, because you did it while having POTS. Your essay will also help to increase awareness about our condition, which we all know is much needed. Looking forward to reading it! -Rita

Definitely. I think I have a combination of IST and POTS. With atenolol, my HR is usually in the 60s/70s lying down, 70s/ low 80s sitting. On a semi-bad day I will start to feel uncomfortable in the afternoon and when I measure my sitting HR it is 90s to low 100s. I try to grin and bear it. If I can't, taking a little extra atenolol helps me and my dr is on board with this. I also have extra fluids and salt, but I think they take a few days to actually work. On the very worst days I have had tachy of 120 lying down. When this happens I take the extra meds right away and spend a day or two in bed. I have been getting the high sitting HR in the afternoon for the past week. I think it was because I got a free session with the personal trainer after joining a gym. I made it through the session but the next day I started getting tachy!

I take my BB first thing in the morning, so it has worn off by the time I wake up. Most of the time I wake up feeling fine, but sometimes I am tachy in the I am. In the first week that I developed POTS I would up collapsing in the office and my body went into convulsions. I am certain this was in order to keep up my BP, because as soon as I got an IV in the ambulance, it went away. I think I have seen others on the board mention this. It happened to me once or twice since, but salt, fluids and compression hose are generally enough to keep up my BP.

Congratulations! I remember how scary it was the first time I went back into a store, and how great it felt when I survived the experience. (And this coming from a girl who LOVES to shop!) I love getting free stuff, so that is an added bonus. My family kept encouraging me to go back to the stores and it did start to get easier with practice.

Lisa, Sorry, I didn't mean to imply that you should have done a search before posting. It is always good to post and find out what the latest thinking is. Here are some links to prior posts about aspartame and Nutrasweet. -Rita http://dinet.ipbhost.com/index.php?act=Sea...lite=nutrasweet http://dinet.ipbhost.com/index.php?act=Sea...hlite=aspartame

This topic has been discussed a few times before. I did a search on the net and tachycardia is listed as a symptom of aspartame on several websites, for whatever they are worth. I probably drank a couple of 20 oz bottles of Diet Coke a day (or more when I was stressed) for more than 10 years. I also started drinking caffeine free soda after getting sick. About a couple of months ago, I decided to all but elimiate Nutra Sweet from my diet. I sometimes chew sugar free gum and occasionally (once ever couple of weeks) have a diet soda, but that's it. My POTS has been improving overall, although I am not sure whether removing Nutra Sweet has been a factor. (It is probably more from exercise) I also tried Splenda when I quit Nutra Sweet, but got headaches. Getting POTS has led me to agree with Futurehope. This is not a scientific statement by any means, but I don't think any of these chemicals can be good for you in the long run. I think that natutal foods are best.

Pers, I just started seeing a therapist over the summer and I have found it to be really helpful. I previously had a very hard time accepting the ups and downs of POTS. Like many, some days I feel like I am almost fine, and then other days things come crashing down. I would freak out after each crash and rfrantically call my doctors, who didn't know how to help me further. My therapist has helped me to cope and to realize that the ups and downs are part of the package. I am better able to handle the bad days because I have realized that there will be good days again ahead. The other thing that I wanted to say is that I have had to put my career on hold because of POTS. Like you, I attendeed top schools. I had a prestigious job, but I could not handle it and had to switch to working part time. Although this was a difficult decision, it turned out to be a very wise one for me. Overextending myself last year made me worse. Scaling back on work has enabled me to focus on my health and my POTS has improved. I know we each have to deal with this in our own way, but just wanted to add my two cents. -Rita

My tachycardia is a lot better than it was when I first got POTS, but it hasn't gone away completely. I think most of us have good days and bad days. On a good day when I walk around, my HR might be in the 80s. On a bad day, it might be in the 120s. So it may be that your tachycardia is gone, or that you were just having a good day. I'm not sure whether you monitor your HR and BP. Some people here don't like to do this, but I personally find it very helpful to do from time to time so that I can keep track of my progress. You probably are getting better, b/c the doctors say that most people do improve over time. Exercise has been the biggest help for me, but if you are exercising too hard, it might explain why the rest of your symptoms aren't improving...or it just may be POTS. With this crazy condition, you never know! Feel better soon, Rita

Great topic. I don't necessarily blame myself, but I'm certain that my busy and stressful lifestyle was a big factor in getting POTS. Stress by itself doesn't cause POTS, but it definitely adds to things. I don't blame myself because I believe in fate and think that everything happens for a reason. POTS made me wake up and smell the coffee. I have learned lots of important lessons because of this illness, including to slow down, appreciate life and take care of myself. Health and happiness are so much more important than many of the things people measure themselves by: money, success, etc. POTS is bad enough, but if I would have kept going, I might have had even more serious health issues in the future. And it has made me realize even moreso how much my family cares about me. So, in a strange way, I think my life in the long run will actually better because of POTS.

I can't push myself, b/c I have gotten very sick from exercising too much. I get headaches and nausea right after, and sometimes I don't feel the same for a few days or weeks. I found that the best thing for me was to start really slowly and to exercise lying down or sitting. POTS makes my heart beat too fast standing up, and it just gets worse with w/ exercise! I like pilates, yoga and riding the bike. I still get very dizzy sometimes riding the bike. I just started swimming and I have been able to swim for a while without feeling dizzy. So my exercise problem is totally postural. Someday I hope to graduate to the treadmill and then get back to the elliptical machine. When I started exercising after getting POTS I could barely exercise for 2 minutes, but I have slowly been able to increase my time. I was up to 30 minutes and had a relapse and had to start back at 2 min. Exercise has helped my POTS symptoms a lot, I think. Hope you find something that works for you... -Rita

Do you feel like the room is spinning? My understanding is that vertigo means spinning. After a few months of POTS I suddenly developed severe dizziness. I am not sure how to describe it, but it was more like the ground was moving up and down than spinning. At first, my doctors insisted it could not be related to POTS. I went through extensive inner ear testing. I was diagnosed with probable vestibular neuritis and went through 3 months of vestibular rehab last year. My symptoms were almost gone, and then they totally came back when I reduced one of my meds. My doctors then agreed that it was the POTS that was causing the dizziness after all. There is some overlap in symptoms between POTS and balance disorders, and in my case, it turned out to be just POTS. This is mentioned on Chris Calder's website too. I would still definitely get tested if your doctor thinks that you have an inner ear condition. -Rita

I don't think that all cases of POTS are genetic. My family is originally from India. I have six first cousins, but hundreds of second and third cousins. Of all of these relatives, lucky me, I am the only one with dysautonomia. I do think I inherited some traits which made me more likely to get POTS. My mom has low BP and also had mitral valve prolapse (MVP) many years ago, but it was controlled with a BB and went away on its own. I think MVP (the prolapse, but not the syndrome) is very common fror women, though. I've read that as many as 1 in 4 may have it, and very few of these women have POTS. I think many of us have struggled with the issues you are thinking about, especially when we were first diagnosed. The DINET and NDRF websites have good explanations of what is currently known. Hopefully science will improve and give us better answers in the future. -Rita

Thanks for posting the article. My good friend's mom had the surgery for Parkinson's. She had great initial results, but now her tremors have come back. I am so glad they are investigating non-surgical ways of brain stimulation too. I am always happy to hear about another possible treatment for POTS. I am hopeful that they will develop many more options for us over the years.

Hi there. I can certainly understand how you feel frustrated. I think that a lot of the symptoms you are having sound pretty common for POTS. It helps to get a good POTS doctor if there is one in your area. Also, are you taking any medications? It's interesting that you feel better in the morning. I think most people on this board feel much better at night, because they get dehydrated in the morning. But I can understand what you mean. I think get worn out during the day and I take my medicine in the morning, but it starts to wear off by the evening. So when my symptoms start flaring up, it's usually later in the day. In terms of how you can get dysautonomia, some people are born with it, and some people get it after pregancy or a virus. There are other causes too. There is really good info on the Dinet main page in terms of causes and treatments. http://www.dinet.org/what_causes_pots.htm http://www.dinet.org/what_helps.htm

Hi everyone, After the recent discussions on biofeedback, I'd really like to try it, especially since I will hopefully be off my beta blocker soon. I called my lovely insurance company to see whether it would be covered. Of course I need special approval and I need to send them articles which show that biofeedback helps with dysautonomia and/or tachycardia. Who knows whether they will actually approve it, but it is worth a try! I read the Spring 2004 Dinet newsletter, which includes an article from Dr. Grubb saying that he published a series of studies on biofeedback and POTS. Do any of you know where I could find these articles or others that might help? Thanks! Rita

David, I was very moved by your post. Morgan is lucky to have such a supportive and understanding husband. She is a very important part of this forum, but I think she is making the right decision in focusing on getting better right now. She will be in our thoughts. Please keep us posted on how she is doing when you are able. -Rita

I'd had 3 flu shots before getting POTS and I did OK with them. I was definitely worried about the reaction I'd have after getting POTS. But I know that getting the flu would be really bad for my POTS too. I read some of the earlier posts on this topic and they scared me to death, beacuse some people feel they were set back for months after getting it. But then I emailed my POTS doc, and she said that I should definitely go ahead with the shot and that they have given it to many patients. So I had my shot last Friday. I felt kinda icky and my arm hurt for a day or two, which I think is the normal reaction. But it basically went OK and I am glad I had the shot. But we are all different, and it think it's a good idea to talk to your doctor before getting the shot.