yogini

Merrill, I don't know much about the spinal stuff, but I just wanted to say that I'm sorry you are dealing with this. I hope that the physical therapy will help you and I am glad you can at least draw upon the knowledge and support of all the others who have these issues. -Rita

James, I agree with the others. I would see if you can get a tilt table test to determine whether you have POTS. In the meanwhile, drink plenty of fluids and take things as easy as you can until you get a diagnosis. Excercise is good if you can handle it, but be careful about overdoing it. When my POTS started coming on following a virus, I felt weak and run down, but kept trying to push myself to keep up my hectic work, exercise and social schedule. I think this made things a lot worse for me. -Rita

Ernie, I agree with Gayle. I am sorry you are bumming out, but I think you are justified in being sad on your anniversary. You have a wonderful spirit which has kept you going all this time and I am sure it will help you get through the anniversary. I am glad that you were able to go shopping after all of these years! I am also happy to hear that you are feeling a little better these days. -Rita

I don't take licorice root. But it causes you to retain more water, which increases blood volume. The increased blood volume usually results in increased BP. It's the same idea as high salt and/or flornief.

Ramakentesh, I think that a high salt intake (from food and/or drink) is usually recommended for most POTS patients to help with low BP and hypovolemia. You should check with your dr, but Gena is right that it should help unless you have high BP. For me eating large meals makes my tachy worse because it lowers my BP further, so salty water (soup broth) is key. That is an interesting theory about the eye problems being related to low BP. Now that I think about it, I had bad eye problems at first, and they seem to come back only when my symptoms are at their worst (probably when my BP is really low). I will have to keep track! -Rita

Briar, I think it's called Grading Scale of Orthostatic Intolerance. Pamyla said she had access to it in the prior post, so I will email her if you can't find it. -Rita

Briar, I am interested in this article too. Here is the link to the old post describing the article: http://dinet.ipbhost.com/index.php?showtopic=1410&hl=stages I did a search for it on google, and didn't find anything. But I don't have your sleuthing skills! Thanks again for being our resident news reporter. -Rita

Julie, I just wanted to say feel better and take care of yourself. You have so much going on, so I can only imagine how overwhelming it must be. I think going to see a psychologist is a great idea, because a professional and objective person could probably really help you through this. Also, maybe you could try taking it easy for a few days or weeks to let yourself heal. Things like going to the grocery store don't seem like a big deal, but they add up and take their toll on us POTS patients. I'll bet you start to feel a bit better after the lung congestion calms down too. And we are all friends here, so don't worry about spelling!! Hang in there, Rita

I agree that seeing a doctor is probably a good idea. You could also try upping your salt intake to see if that helps. I used to constantly have to go to the bathroom, even before I got POTS. But since I have been on florinef and high salt I don't have this problem anymore. I can't take salt tabs, so I drink soup broth in the am and keep salty stuff at work (instant soup packets) to beef up my BP if needed.

Dawn, Congrats on getting an appointment at Mayo. It looks like your persistence paid off. I had a really positive experience there and I hope you do too! They usually mail you a schedule with a bunch of appts, although the doctor may change/add to the schedule once you get there. You can call and ask if they would be willing to schedule autonomic testing and an autonomic neuro apt for you. You can also try to get squeezed in while you are there, which is a bit harder. Good luck, Rita

Amy, I agree with Katherine that you should see an endo. My uncle, who is a cardio, told me to do so as soon as I got POTS, because there are some endocrine conditions which mimic POTS. And since you are having problems with your metabolism, it's all the more reason to see an endo. Don't feel guilty about going to too many doctors and don't worry what your doctors or family members think either. They are not walking in your shoes. You obviously have something serious going on and you deserve answers. These are rare problems which most doctors may not know about, so unfortunately we may have to go to several doctors before we get the help that we need. You mentioned that you had some tests (breathing, gallbladder) which came back mildly abnormal. Are there any further tests that you can take or specialists you can see to determine whether you have a problem in these areas? I would not hesitate getting as many tests as you can. If they come back negative, it will only help narrow things down and rule out your fears and concerns. I am not sure whether you have a good local POTS doctor, but another thought is to go to Dr. Grubb or a clinic such as Mayo or Cleveland. It sounds like you have something more going on than most POTS patients, and a clinic with expertise in multiple areas might be able to figure things out for you. As for a naturopath, if you determine to see one, you can always do so at the same time that you are seeing the other doctors. Feel better soon, Rita

Mindy, When did you start taking your new meds? If you just started them a few days ago, I wouldn't be surprised if one of the meds was causing your symptoms. I agree with the others that you should keep in close contact with your doctor and talk to him about adjusting your meds if the symptoms continue. Every now and then I get a resting HR as high as yours (sometimes it has been even higher), and the drs have said that this isn't dangerous for me. I have had the high BPs from time to time too, so I am slowly adjusting my florinef and salt to bring it down. The doctors don't seem as worried about these things as I am (they think it's just part of POTS), and that helps to reassure me a bit. I know how miserable it is to have these symptoms, though! Anyway, it seems like you are going through a rough patch right now. So just wanted to say hang in there and feel better. -Rita

Gena, Sorry you havent' been getting much sleep. And don't feel guilty for venting on the board. The symptoms you are having are truly scary. For me I definitely still panic every time I get severe tachycardia, but I think it's only natural to get freaked out. You'd mentioned a week or two ago that you were under a lot of stress at work, and I'm wondering whether this could also be making your symptoms worse? If so, I hope things calm down for you. My tachycardia seems to always be linked to low BP. When my BP comes up, I don't really get any tachycardia. (My problem is that I can't seem to bring it high enough without it being too high, but that's a different story) I know everyone is different, but have you tried taking anything to try and bring up your BP more? I am not sure if you have tried high salt (10-15g/day), florinef and/or midodrine, but it may be worth talking to your doctor about these. -Rita

Hey Amy, I don't know about celiac, but just wondering if you'd tried cutting down on foods that cause gas? They are listed in this article from WebMd: http://my.webmd.com/content/article/90/100648.htm There are also meds like beano and Gas-X which have helped me in the past, assuming they are OK to take with any meds you are already taking. If your problem is serious, these ideas may not work, but just thought I'd throw them out there. -Rita

Beverly, I second what Tearose and Geneva have said. You are doing a great job, and we are just being overzealous in trying to help Nicole (kind of like what you said about her new doctor in yesterday's post). As someone who came onto the board only shortly before you, I know it can be really hard, because different people have different opinions about medicines, doctors, etc., so you wind up getting lots of different advice (sometimes opposite advice). Getting tons of advice is what I love about this site, but sometimes it can be really difficult to determine which advice will work for you. Remember that none of us (as far as I know) are doctors, and we are only giving you our best guess as to what might work for Nicole, withought knowing everything about her situation. You know her situation better than anyone else, and you are in the best position to make decisions. It's clear to us all that you obviously care for your daughter and won't guide her in the wrong direction. As for your question below on denervation, it's when your nerves in your arms and legs don't work properly. When you stand these nerves are supposed to cause the blood vessels to constrict and cause a slight BP increase, but for many POTS patients, they don't work. So when we stand, gravity pulls the blood downward and causes pooling in the legs, causing the POTS symptoms. These same nerves also cause us to sweat, which is the reason for the sweat test. In the one I had at Mayo, they ran a small electrical current though my nerves to see if I would sweat. You may actually be able to see if Nicole has pooling without any test. My hands and legs turn bright red. When I first got POTS, it used to be so bad that they were dark purple and painful.

Amy, I have all of those symptoms, except for weight loss and the pain in the back (I do get the pain in the abdomen). But I had bad gas and minor acid reflux from time to time before I got POTS. I just chalk my current symptoms up to my prior problems, plus the fact that I am now taking florinef which is not great for my stomach. I think it definitely makes sense for you to see a good GI doc. -Rita

Abby, Welcome to the board. I think you will find a lot of great info and support here. Are you from New York? My email is ritat1006@yahoo.com if you want to talk. If you want to get input from the whole group, you could also post your story on the board under a new thread. -Rita

Merrill, I usually throw up about 20-30 min after taking the salt pills. This time, I tried Thermotabs beause they are coated and contain less salt than the regular salt pills. It doesn't make much sense, because I have no problem drinking soup broth, which has a lot more sodium than the Thermotabs. I have tried taking food and water with the salt tabs, and I still can't seem to keep them down. After this past weekend, I don't think it's worth it for me to trying them ever again... I am usually OK with other kinds of pills, though. I always hated liquid meds and started taking pills when I was really young. Also, I just noticed on the web that pitechiae mentioned by Gena is a side effect of florinef, which I am taking. It may be part of the reason for my nosebleeds.

Thanks guys. Your explanation makes sense. I kinda thought it was related to BP. I will be sure to mention it the next time I talk to the dr.

Beverly, I just wanted to say that I am glad that Nicole has shown some improvement these days. And I am glad that you found a new doctor that is running a whole bunch of tests. I hope that these tests will lead to some answers and even more improvement for Nicole. I think that some people on this board prefer a more medical approach to dealing with their POTS while others prefer a more natural approach. While I take the medical approach, I think this is a very personal decision that you and Nicole can only make for yourselves. And I understand you are limited by geography and Nicole's inability to travel in her current state. In terms of the mercury test, I agree with Katherine that it is probably unlikely that Nicole has high mercury levels from fillings and food alone. I have read a bit on this topic and re-read again some of the posts from yesterday, because I have several silver fillings (as does my mom (which she had when she was pregnant with me)). Since you are having a bunch of other tests anyway, it may make sense to wait and see if anything turns up from the other tests before proceeding any further on the mercury. If something turns up on the other tests, you may not need to deal with the mercury issue at all. Best wishes, Rita

Sorry for bringing up such a graphic topic. The past few times when I have vomited (most recently over the weekend when I tried to take a salt pill), I have gotten a pretty bad nosebleed. It's almost like the force of the vomiting causes a lot of blood to rush to my head to cause the bloody nose. Before POTS, I also used to get nosebleeds every once in a while (once every couple of months) in the shower after working out. I am going to mention it to my doctor at my next appointment. I don't think this is necessarily serious, but it's very scary to see all that blood. I was just wondering whether anyone else experiences this and whether it could be related to dysautonomia? Thanks, Rita

Very blue, Out of the ordinary is a much better choice of words than freak. But I don't think you are out of the ordinary for a POTS patient, if POTS is indeed what you have. (I have read a number of your posts, and I don't really understand your symptoms or whether you have POTS.) I went to the gym on the day of my onset. I was completely functional and it hit me out of the blue. I am sorry you haven't been getting much support from your friends and family. I don't have a good doctor, but my friends, family and co-workers have been incredibly supportive. I can't imagine what it must be like not to have that support. Everyone has bad things happen to them in varying degress, at some time or another. I agree with Katherine that you have to make the best of what life deals you. And if you watch TV or read the news, POTS isn't so bad compared to some of the other problems that people out there are dealing with...

I have a sister who is healthy and my parents are pretty healthy too, knock on wood. My mom did have mitral valve prolapse about 10 years ago, and I wonder whether this is related to my POTS. She took a beta blocker for a couple of years and then it went away. Very blue, it's sad and unfair that you keep refering to yourself as a freak, especially because you seem to have mild symptoms compared to most people on this site. POTS is a medical condition, and POTS patients aren't "freaks" any more than people who have more common conditions like cancer or diabetes.

Congrats and happy bday. I know you'll make a great mom, Merrill!

It's interesting that you mention this. I never tried checking my BP in different positions. These days I feel feel much more comfortable sleeping on my back. I can feel my heart start to pound when I sleep on my stomach, and sometimes on my sides too.