yogini

Most neurologists don't know much about dysautonomia, so I think you are right to wait for an autonomic specialist. Otherwise, maybe ther is a dr in your area on the Dinet dr's list? Or an electrophysiologist? Going to a dr with experience makes a big difference. POTS drugs can take a while to work, but not 8 months. Hope you get the right dr. In the meanwhile, hang in there!

NM, What is Sheetali? I have never heard about it. Most of the breathing exercises help me, except the ones where you have to breathe super fast. But I am able to do even those now. Most good yoga teachers always say to skip what you can't do anyway, which takes the pressure off. I love doing anything bent/inverted and getting the head rush - just have to come up slowly!

As mentioned in my first post, and rama's too, yoga works for some and makes some people worse. I don't think anyone was suggesting that everyone try it. As with any other exercise or treatment, we have to think about our individual circumstances and consult our drs. Personally, I find it encouraging, though, when even a few of us are helped by anything.

What is an atlas? Part of the body? How is it adjusted? Sorry if this a stupid question

Thanks for the articles Rama. I don't think it's conjecture that yoga can help some people with POTS. Lots of others here have posted about it. There are other studies showing that it affects other chemicals and mechanisms in the body related to POTS. It also improves circulation and slows down HR. There are some people that have also had a bad reaction to yoga.

I didn't know that slouching fwd helps with chest pain, that is interesting. I am not sure that bad posture causes POTS, but it probably doesn't help. Neck pain is a symptom of POTS. There are also coconditions like EDS that could cause POTS or neck pain. It is all very complicated, and personal to each of us. I don't have EDS, so not sure why I have bad posture or POTS. I wish the answer were so easy as having stretching/yoga cure POTS, but that isn't the case. Even my yoga teachers that have been doing it for decades have knots, posture issues, etc. I think some people here have seen improvement with chiropractors, but others have gotten hurt/worse. So it all depends, but unlikely to cure. Wish it did.

Angela, I really agree with your answer. And ashelton I do agree it has to go with blood flow in a lot of us. I think coat hanger pain is because the body takes blood away from the neck/shoulders to make sure the brain gets enough. Naomi, in yoga they say hunching forward closes prevents your lungs from expanding fully. I noticed that when I am in positions that open up the chest it is a lot easier to breathe. Since a key part of dysautonomia is getting oxygen to the brain, breathing is important. Also, the body is most efficient when it is in perfect alignment. When you are aligned, your bones support you. Like when you do a handstand it is a lot easier if you are straight. Otherwise your muscles hold you up, which is much harder on the body - it's like exercise, which is hard to handle for POTSies. I can tell that when I hunch forward my legs fall asleep faster. So I think it doesn't help with the pooling and closes off circulation. And Zap, Yoga does have an overall calming effect on the body and mind. I am sure it's not for everyone, but I really love it, so it works for me. Midtra, I too have trigger points in my neck and will pm ou about the book. Thanks!

It is sort of like the chicken and the egg for me. I am not sure if POTS causes neck pain or if me k pain is a symptom of POTS. "Coat hanger" pain is common with POTS. I do know that I feel better when I do things to help my neck pain like , exercise, do yoga, etc. I have improved my posture through yoga and I think it helps a lot.

By the way, BP is supposed to go up during exercise. I would talk to your dr to figure out what is a safe BP. As patients we are focused on the numbers, but I think the biggest indiciator is how you feel. If you aren't sick during or after, have headaches, etc. that seems like a good sign that you are not harming yourself.

Beta blockers stabilize the HR, which is probably why your HR isn't going up. I think there is also a distinction between POTS and NCS. Since I have POTS and my HR tends to keep going up and up (way more thabn it is supposed to). I think those with NCS don't have that reaction - their HR doesn't increase as much as it is supposed to and as as a result they can't maintain enough BP to exercise. The target rates for health persons based on age don't really work for POTS because our HRs are so screwy in the first place You could talk to your dr about reducing the beta blocker or switching to another medicine that doesn't affect HR - but if you are even able to exercise then you are probably doing OK as is. I am sure Dr Levine's protocol works for many, but not for everyone. There are a lot of benefits to exercises even if your HR doesn't go up too much. You get your muscles moving, blood flowing and building strength. Exercises like pilates and yoga that don't get the HR up still help POTS. Swimming is one of the best exercises for POTS and that is in a flat position and so the HR increase is much less. I am biased in giving this response. When I do cardio (which I haven't in a few months), I keep my HR in the 130s - or I will get headaches and symptoms for days after. Most of my recovery is from doing yoga, which isn't cardio.

Your friend's experience sounds a lot like mine. I took off 1 1/2 years from work .It's probably the one of best decisions I have ever made. I have a high stress job. I was looking for other work and couldn't find anything else that would help me. I quit but was actually shocked to be offered a leave of absence from my job. I traveled abroad and also learned yoga. I improved leaps and bounds during this time. 6 months turned into 1 year turned into 1 1/2 years. I decided to go back to work in late 2008, but my former job wasn't there for me anymore b/c of economic crisis. I was actually able to find a contract job soon, which was working from home. That was a good transition for me. That job was supposed to last a couple of weeks and wound up lasting a couple of years. I got an office job over a year ago and don't find it taxing anymore. I work as a contractor, so don't get benefits, but otherwise I am pretty much back on my career track. Hopefully the contractor status will change sometime soon, but I take it one day at a time. It is scary taking a leap like that. They always say not to have a gap in your work history, plus you have to think about finances, healthcare, etc. I would recommend it to anyone who thinks they can manage. I was pretty conservative in my spending, didn't buy any clothes or eat in restaurants, etc. It did not take very much money to live and it is actually freeing to let go of all the things you think you need and focus on what you actually do need. Even in the worst economy, things all worked out for me in the end. If not for POTS, I'd probably still be in the rats' race, which is not a great place to be. I am not cured, but feeling so much better and continuing to get better as time goes on. PM me if you want to talk more.

Agreed on the salt - when I was at my worst I used to drink a cup of salty broth in the evening followed by a couple of glasses of water. And again in the am. That really helped

There is a name for this in POTS - when you can all of a sudden get tachy, sweaty and have to rush to the bathroom. I've had it and others have posted about it - but I can't remember what it is called or find the old posts for you. Mine never happened in my sleep, but It could be that your BP is dropping too low while you sleep and your body is dumping adrenaline to try to bring it up. But there are other reasons it could be happening too - not related to POTS. Maybe you can get a sleep study to figure out what is going on.

Yes, tachycardia itself can cause nausea/vomitting. However, whatever is causing the flare up in symptoms could also cause nausea. Also, a lot of people with POTS have food allergies or gastroparesis, wihch you may want to look into if your nausea persists. Don't be discouraged because you are having a few bad weeks. The ups and downs are pretty common and it is not unusual for them to last a few weeks or months. I wouldn't assume you are getting worse unless you continue to decline over several months. I hope you find a way to treat your symptoms and feel better soon.

Good for you for standing up for yourself. It must be a relief to get an advocate to help you wade through this. I am outraged that they didnt offer this to you up front. You would think schools would want to find a way to work with good students and help them graduate. Let us know how it goes.

I think the others are offering great advice. I hope you find a way to continue your school, beause it is your right. In the meanwhile, be sure to take care of yourself and try not to stress out as it sounds like that is just making tou worse. Can your parents handle these school issues for you? I hope they figure out why you are retaining water. Are you taking florinef? That is a side effect.

I'd say a large number of people here don't know their cause. I think POTS is treated with the same meds for the most part whether hyper/nonhyper etc.

Many of us (most of us?) have erratic symptoms and they definitely don't always coincide with HR and BP. My drs and I had the same thoughts when I was first sick and we thought I might have inner ear or endocrine conditioning addition to or instead of POTS. Turned out to be just plain POTS for me. And medications help me a lot. Is your dr a POTS specialist? Maybe it would be helpful to see someone that specializes in POTS?

I went through a phase where I tied to incorporate it, but could not. I did make tasty chocolate truffles with it, but I found the taste a little heavy for everyday cooking.

It was fabulous for me and really helped with my POTS and BP. I don't think I had too much trouble adjusting. I stopped taking it when my POTS improved. There have been lots of discussions on the forum about which birth control is best for POTS.

I have always gotten into work late, even before POTS. Post POTS it is even worse. Whenever I actually need to get somewhere on time (meetings, etc), I set my alarm clock 2 1/2 hrs early so that I have enough time to straggle in. And I make sure I go to sleep the night before. I get in at 10:30. I cannot imagine having to be somewhere at 7:30. Luckily every place I have ever worked has been understanding. I tend to go above any beyond the call of duty, so I think that makes up for it and people are always glad to have me around and kind of joke about the fact that I get in late. Also, I try to be available at all times by email/blackberry. So I check in and answer a bunch of calls, emails, before I leave home, That actually makes me even later to work, but I don't think anyone cares. And I do that again at night. Workling from home I can do lying down. Not sure that's possible to do when you work in a school. And actually there are lots of other peple in my office that get in late for different reasons - like my neighbor is a mom and is always going off to school things for her kids. I actually don't feel bad about it, and I figure if there is a problem, they will speak to me, at which point I will tell them about my medical issue. I haven't yet! By the way, we all understand what your are going through. That's a bummer that your family doesn't get it. We are all here to listen if they don't. I hope you get some answers in your sleep study.

I don't think that betas cause vasodilation, but they do lower BP in many people. Also, the side effects of a beta are usually worst in the first couple of weeks and even out. I had leaden feet, as my dr called it, but it went away after about a week. I don't know about propranolol, but bystolic is a new beta that stabilizes HR without affecting BP as much as the other betas. You may have to wait out side effects, play with different betas and/or take another med to boost your BP as some of the others suggest. It's never easy, I know!

Are you making sure to stay hydrated? Do you know if your HR is going too high when this is happening? The reason I ask is that I was dry heaving (nothing in my stomach) on my TTT. The DR said this is a reflex when the HR goes too high. Hope it doesn't happen again

Well, I finally tried this waist cincher yesterday. in the store they told me that I would be able to wear it for a full day or if I had any problem, wear it for 2 hrs at a time. I was able to wear it from about 8-3. It did not worsen my reflux. I ate a late lunch, and when I started to get full from the lunch, I got really uncomfortable and had to take off the compression. I think I will be able to tolerate it better if I eat smaller meals more frequently, which is better for POTS and in general, though I am nto sure it will work with my work schedule. It actually feels very supportive both to my abs and my back. I have never been able to wear waist high compression hose. This is much tighter, but for whatever reason I am able to tolerate it. I think it might be because it doesn't go past my hips. Maybe it's the tightness from the legs up that gives me a problem I have it on again today and don't mind how it feels. I will try and wear it to work tomorrow too and see how it goes. For anyone looking to try this, I would really recommend going to a store and trying things on. You will know right away whether you feel comfortable.

This looks more like sports compression wer rather than medical compression. It doesn't look like they offer compression stockings at all. I think the medical ones would be a lot tighter and more effective for keeping up BP.