yogini

Thanks to all of you for your suggestions. You've helped to convince me that I do need to see a doctor instead of trying to figure this out on my own. I do have a routine that I follow - my bed is tilted and I try to eat smaller meals, avoid the foods that cause reflux/gas and don't eat before bedtime. But my self-treatment sure isn't working! Kristen I think you're right that more than one thing is going on. My POTS dr won't be much help, but I do have a good (and very cute!) gastro. I am just scared that he will suggest another upper endoscopy. I've had 2 of them before - one just a week before I got POTS. I think it contributed to my onset and I don't want to go thru that again. And, unfortunately, I may not be able to make it to the gastro for a couple of weeks. Steph, I think my gastro did tell me that I could take Prevacid as needed. I will check with him again. I've been taking it every day for the past few weeks and it helps, but not enough. Maybe it's just that I need to switch meds. Most of the time my stomach doesn't bother me, and my episodes don't usually last for more than a week. So I'd rather not take something every day. I read a little bit on lactose intolerance, and I think I may have a very mild version...I think some people react to all dairy and others to just some forms. Jan, I am curious about the digestive enzymes you mention (and, by the way, I was so happy to hear that your husband's treatment is going well!). Which ones do you take? -Rita

Great idea! When we have crazy symptoms, a lot of times it's related to our meds. It's also great info to know what meds are out there that people are taking.

About 3 weeks ago, I started getting really bad reflux and gas. I have had this many times before, but it has been under control when I take Prevacid as needed. The funny thing is that I drank a lot of diet soda and carbonated drinks for years and decide to give it up about 6 weeks ago. This should have helped my stomach issues, not made them worse. In fact I have mostly been eating really bland foods and drinking only water and broth for the past month and my stomach hasn't really gotten better. I've barely even had Gatorade, because it is acidic. And I've even been taking Prevacid every day which I usually don't. I did start eating yogurt recently, and I am wondering whether that is the problem. I ate it yesterday, and a couple of hours later, I felt naseous, had gas and then got diarrhea. Someitmes I gag right after eating the yogurt and I have the same problem with milk, but I am OK with other dairy products like fro yo and cheese. Is it worth getting tested for lactose intolerance, or should I just avoid yogurt and milk? What kind of tests do they use? My POTS symptoms are in check for the most part, and I don't want to do anything to cause a relapse. The only other change that I have been making is to reduce my beta blocker, and I am wondering whether this has made me hungrier and caused my stomach to produce extra acid. This doesn't explain the other symptoms, though. Would appreciate any thoughts on this... Thanks!

Hi Chad, I think Steph has given you some good advice. POTS usually means a continued increase in HR of 30 bpm or more, regardless of whether your BP is changing. So based upon your tilt table test and the symptoms you describe, it does sound like you may have POTS. It can be useful to check your heart rate, because it gives you information that you can pass along to your doctors. But I would focus more on how you are feeling rather than what your HR is. If you are feeling awful, then it makes sense to check your HR and rest if it is too high. Most of us don't have structural problems with our hearts, and if this is the case, then beating too fast is not really dangerous. You can find this out by getting an ECG and stress test thru a cardiologist. I was a totally healthy person and this hit me out of the blue, just like you. I know it's really scary at first. Hopefully in time as you read more about POTS,your anxiety will lessen. Anxiety doesn't cause POTS but it can sure make your symptoms a lot worse, so it's important to try and keep it in check. You should also try to eat right and on time, because this will help your symptoms a lot too. I think most of us here try to take really good care of ourselves and it does make a difference. Feel better soon, Rita

That is SO weird! I get this too. I'd assumed I was just losing steam at the end of the workday. But I always seem to get a second wind right after I get home. I thought it had to do with the lighting at work, or just getting away from the stress. But now that I read all of your posts, I realize that it's just another crazy POTS symptom...although I am sure my doctor would look at me like I was from Mars if I mentioned it. It's funny how we figure out our symptoms from talking to one another, rather than to our doctors. Eating and resting do help with this. At Mayo they told me to sit with my feet propped up above my heart for an hour. If I remember to do this, it helps too!

I subscribe to another internet dysautonomia support group which is mostly for NCS, and there are lots of men in that group. Based upon this, my non-scientific guess is that gender is a factor for POTS, but it may not be for other forms of dysautonomia. I think women have a higher HR on average than men, so I can see how this might make us more prone to getting POTS. I do agree that men are less likely to go to the doctor, though, so there are probably loads of them out there undiagnosed! -Rita

Radha, You have posted this question from time to time before. I have had these symptoms in the past, though not to the extent you describe. Although I think lots of others have had these symptoms too, I think your situation (where it is so bad that you can barely eat) is a bit unusual. I think most of the people on the board who have trouble eating have nausea or other GI problems. -Rita

I don't know how the NHS works, but can you see another GP or even a cardiologist? Also, is it possible to see a doctor outside of the NHS even if you don't have private insurance (i.e. paying out of your own pocket)? It's hard for us in the US to offer you advice, because we don't know how the system works in the UK. I've been reading your posts over the past several months and you have had a lot of ups and downs, but you have stayed strong. You're very intelligent and I am sure you can figure out a way through this. Hang in there and stay positive! I would not take courses online or give up on Oxford. You will make it there!

I agree with Carmen. I am not sure how often you are taking your BP or how many readings you had in the very high range. But, personally, if it is fluctuating, a couple of very high readings would be enough to send me to the ER. In terms of meds, I am not sure what the starting dose for your beta blocker is, but 5 mg sounds really low. One idea might be to talk to your doctor about taking an extra dose on days when you get high BP. Also, I seem to remember that you were taking midodrine -- are you still taking it? If so, that could be contributing. In terms of going to school, I hate to say this, but have you considered deferring for a semester or a year so that you can get more stable before you go? Anyway, hope you feel better soon.

I get BP spikes from time to time. It is awful, I know! I was first getting them due to florinef, which I no longer take. Now when I get them, I cut down on salt and/or stop wearing compression hose. It usually goes away in a few days. Hope your meds work and that you feel better soon!

Sorry you had to go thru that ordeal. It's great that you were proactive about it and used all your available resources. We forget about politicians, but I interned for a Congressman once. They help constituents with all kinds of things, and, believe me, our health issues are much more important than most of it! Anyway, it's so great that you came through with flying colors. Hope you're back on your feet soon!

I have a cooling vest from Silver Eagle Outfitters. It's the kind that you dip in water and so it is not as heavy or bulky as some of the other cooling vests. I've worn it on the 90+ and 100 degree humid days in NY and it definitely helps to keep me cool, although I am not sure how it compares to the vests that you pt in the freezer. I'll be visiting TX in a couple of weeks and I am nervous about it, because I know the sun is really strong! http://www.silvereagleoutfitters.com/shop/vest/WCV_B.htm

Jeff, The benefit of being in the water is just the effect of gravity. People with POTS have trouble in an upright position because gravity pulls our blood down, our blood vessels may not constrict properly and our hearts have to work extra hard to keep it up. Under water, out gravity isn't pulling our blood down so strongly, so out POTS symptoms may not be as bad. I think most people have a lot of questions when they first join this board about why this happened to them. If you haven't already, you should check out the great info on potsplace.com and NDRF. I think the main causes are genetics, pregnancy/childbirth, accident/trauma and post-illness. Most of us on this board fall into one or more of these categories. I'm not sure that electrical waves are related. And some of the other things you mention, like gait and visual problems are symptoms of POTS, but not causes. So you're right that there are probably a lot of people on this board that had these symptoms growing up. Of coure there is a lot of research still going on about POTS and we will have more info about what causes POTS over time. Keep asking questions! -Rita

Tearose, I am so happy to read your postl! I know that you struggled for many years, and I am glad that you've found something that has helped you to improve. It is motivation for all of us to keep looking for the right treatment. Based on Ernie's post from a day or two ago and now yours, I wonder how much better we'd all be doing if we got better sleep. Very interesting. Like you, I have taken a lot of small steps over the past year which have helped me to gradually feel better. It's hard work, but it sure feels great to have all of those efforts pay off! Hope you continue to improve and definitely keep us posted on how things are going. -Rita

I'm glad you've continued to hang in there looking for treatment and that you finally found some doctors that are helping you. Hope you keep improving and please keep us posted!

Emily, Nina, Michelle and Melissa, Merci beaucoup! -Rita

I took florinef for nearly a year with good results and minimal side effects. (Actually the hardest part for me was coming off the florinef when I didn't need it anymore) I didn't really have a POTS doctor when I first went on florinef so I didn't know about high salt and compression hose. I wish I would have given those at try before going on florinef, but otherwise I really have no regrets. I started off on a low dose, 0.1 and then increased to 0.2. I did not have any problems with my potassium. I hope you are starting off on a low dose. I would just wait for a month or two and see what happens in terms of weight gain and side effects before increasing it any. It takes a week or two for the florinef to even start working. Hopefully any side effects would be minimal at a low dose. As for the weight gain, I understand because I was in great shape before I got sick. I long for my pre-POTS figure. But I agree with Poohbear that I prefer having a few extra pounds and having fewer symptoms. I don't think florinef caused me to gain any weight. Although I did gain weight, I am pretty sure it is from my beta blocker. I can see why you might be scared to try florinef b/c of everything posted on this board. Although it sounds scary, we are all different. And according to the literature I've seen, florinef is one of the most commonly prescribed drugs for POTS. If your doctor is prescribing it, it sounds like it's worth a try.

What has helped me the most in terms of initially getting back on my feet, getting to work, etc. is definitely atenolol (beta blocker). But I think Sally is right - it's really a combination of the beta blocker + taking really good care of myself, in terms of diet, fluids, salt, rest/not overdoing it and especially EXERCISE, increased over time, which have helped my progress. I am weaning off the atenolol now, and can see even more how important the other stuff is.

Here is a link to an old discussion on this topic, which is pretty interesting. http://dinet.ipbhost.com/index.php?showtopic=249&hl=ohio Don't forget about us folks from the Northeast - there seem to be a lot of us too. I think Michele is putting together a map of our locations soon, so that will be really informative. Although there are fewer doctors on the west coast, I wonder if weather is also a factor. For one thing, many of us get POTS (or get worse) following viruses which might be more frequent more in cold places. And it seems like we have more people here from Canada than California! -Rita

Pers, I just wanted to add my words of support for you in this time. I don't know much about pacers, other than that they are a serious step. I would encourage you not to rely on a single doctor and make sure to do lots of research before making a decision. Does the doctor who proposed this have a lot of experience treating POTS? I've had doctors that dabbled in POTS and have come to learn how important it is to have someone with lots of experience. If he's just guessing that a pacer may work, I would not take that gamble without exhausting all of the other alternatives. In addition to the meds you mentioned, there are a ton of treatments listed on potsplace.com. I know you feel desperate and want to go to school, but don't make any hasty decisions that you could later regret. You have to think about what is best for your health in the long run. I can tell you that things were terrible for me for an entire year, regardless of what I did, but eventually they started to get better. They can improve for you too. Hang in there and keep searching for the right treatment.

Although many people with POTS have a drop in BP when standing, I think a slight drop in BP when lying down is actually normal. If you are having a big drop, it may partly be the mestinon. I was prescribed mestinon, but never took it. From what I remember, mestinon is supposed to raise your BP only when standing, so when you lie down it is no longer a factor. If you feel funny and are getting headaches, I would call the doctor. -Rita

Hi Jennifer, Have you had an ECG and stress test to confirm that the structure of your heart is OK? Based upon these tests, my docs have told me that my heart is normal and POTS won't do anything to damage it. I think this is the case for most of us on this board. And, since my heart is normal, my docs told me that I should go on with my routine life as much as possible, and not to worry too much about the number of my heart rate too, unless it is really high (like 150--this number is different for everyone). In my case there are a lot of other symptoms, like dizziness, nausea, and headaches which have kept me from being active. And also I get tired pretty easily, so I know I have to rest a lot. If you are not getting these symptoms, then you're really lucky! Florinef is a steriod which increases blood pressure and blood volume. I took it for almost a year. It did help me initially, but now I don't need it anymore. It can have some crazy side effects, so I would recommend trying lots of salt and compression hose before going on florinef. I see that you are already taking a beta blocker. That's what has helped me the most! Anyway, just wanted to say welcome. -Rita

Danelle, I don't know much about Celexa, but I took a low dose of florinef for a while. It helped my POTS symptoms, but it did give me a lot of anxiety. I didn't realize it until I got off of the florinef and the anxiety seemed to disappear. I wonder if this could be contributing to your son's symptoms? -Rita

I am the opposite of everyone. I think I feel best at home, second best at work and my symptoms seem to be the worst when I am anywhere else. I think part of it is in my mind. I feel safe at home and know I can have my salt and water at any time, and can lay down or get to the phone if I need to. I can also control the environment in terms of lighting, temperature, etc. Fewer of these things are under my control at work. When I am anywhere else, I have to deal with the heat, bright lights and loud noises, and anything else that can happen. As for mold and other environmental factors, it makes sense to get your house checked out. But my guess is that most of these kinds of factors would have some long-term effects that probably wouldn't go away by being away from home for just a few days. -Rita

Evie, Thanks for your post. You described so well what I have been struggling with on a day to day basis. I agree that it's SOOoooo very hard to figure out what your limitations are. We all want to make progress without hurting ourselves or sliding backward. Some of the battle may be in our minds, but that is only natural. After struggling so much with POTS, I think it's normal to be tentative and risk-averse. And I think most of the battle is physical, because doing too much can worsen your symptoms a lot. I am inspired by many people on this board and what they are able to accomplish: taking vacations, working, going to school and raising children. Hearing their stories encourages me to continue trying to do more. Other things that people on this site do (like riding roller coasters) I don't think would work for me! It's good to know your own limiitations and set your own pace, as you already seem to. My docs pushed me last year to exercise and to reduce my meds. I tried to do these things and got very, very sick. I tried again this year, at my own tempo, and it worked much better. It took almost a year longer than they wanted, but, hey, I got there! I would encourage you to keep trying new things slowly. There may be some setbacks along the way. And there may be some things that you can't do at all. If you take small steps, it will hopefully minimize the bumps in the road. -Rita