yogini

As far as I know, probiotics are "good" bacteria which help with your overall digestion. Will post if I learn anything more from my doc.

I ddon't have ADD and it doesn't come up here as a topic too often, which makes me think that there isn't much of a correlation. Does your dr have many POTS patients? It seems irresponsible for her to make such a blanket statment without any backup - this is sort of like when drs try to lump POTS with anxiety. Did she diagnose you with ADD based upon testing, or was it just her guess?

Thanks everyone. It's good to know that probiotics have helped many of you. I have an appointment with my gastro on Tues afternoon to ask him about food sensitivities and probiotics. I'm holding off on the yogurt because dairy may be an issue for me and also b/c I'd like to see what my dr recommends.

Thanks for the information. I wouldn't say that my symptoms necessarily severe, but I do have really bad gas and bloating and my POTS always seems to act up when the stomach problems are at their worst. I also had reflux for years and took prescription meds, but it has improved in the past year or two. I really think I must be reacting to something I am eating, I just need to figure out what. Louise, how did your daughter determine to get tested for food allergies? What type of doc did she see and what type of testing did she have? The more I think about it, I think I need to see my gastro before switching over to gluten free. I've had him for several years for the reflux. I don't want any invasive testing, but maybe he could do some blood tests and give me some guidance on the dietary changes.

Does anyone know whether probiotics or other supplements could help with chronic gas and bloating? I have always thought about taking them, but don't really understand which ones I should buy. This is my problem with a lot of supplements. It's really hard to figure out which ones to buy and where to get them from.

Maybe the dr doesn't like the relative or maybe he didn't get approval from the network to air a story. I applaud you for your initiative in trying to increase publicity for dysautonomia. We are eagerly waiting to see the article!

I have decided to take a stab at going gluten free and dairy free. I will be getting my flu shot next week and will ask my dr for a celiac blood test. Regardless of whether I test positive, I'm going to try gluten free because I have constant bloating and gas. And I am hoping it helps my POTS symptoms. It is really hard because I LOVE to eat and cook. I've read through old posts, but had a few additional questions. Are there a lot of foods with hidden gluten and lactose? Do you constantly have to be reading labels? Does it ruin everything if you accidentlaly eat something with gluten? Because I had sushi tonite and noticed that the soy sauce has wheat in it! Good thing I haven't started the diet yet. I'm planning to live off of sushi, but hopefully I can find a wheat free soy sauce. Also, are there any good websites with info? The ones that I've found seem to be places to buy gluten free foods. I'm planning to eat rice, corn and potatoes. I don't really want to invest in any specifi gluten free foods at this stage (and if I do it will be from my nearby Whole Foods). I just want an informative, non-commercial website. And how long should I try this for? Thanks!

I think you guys are right. It does depend on the circumstances and the person. I think sometimes people are trying to compete for attention, other times they forget I am sick or are trying (though not succeeding) to be helpful or show that they understand how I feel. It's just like the "You look good" comments that we all get from time to time. Some people do it to be mean and others have good intentions but say the wrong thing. It's still frustrating b/c I've tried to explain my situation...and I think I sometimes make it worse by not responding or pretending to agree with their comparisons.

What is your daughter's HR and BP? My HR and BP are often "normal" especially with medicine. My cardiologist kept telling me that I could not be having POTS symptoms while my vitals are normal. I know after having this for a few years that you CAN have symptoms even when your vitals are normal. If you read through old posts on this forum, you will see that others have experienced this too. This is especially the case if your daughter is taking meds - the medication could be helping to bring the BP and HR in the normal range. I do think it is worth going through the ear testing, though I went through this and was tentatively diagnosed with an ear disorder on top of my POTS...only to eventually find out that all of my symptoms were POTS. It sometimes takes a while to find black and white answers with this stuff, but you will find the forum to be very helpful.

Do any of you have people in your lives who call you whenever they have a cold or another everyday bug and go on and on about how sick and horrible they feel? I noticed I have a couple friends and family members who started doing this after I got POTS. When I was first sick and my mom was staying with me, my sister used to come over all the time and lie on the couch and say how sick and tired she felt - coincidentally these complaints stopped once my mom left. A couple of other friends also do this to me on a regular basis - one once compared my POTS to her husband having his wisdom teeth removed. I am really not one to complain, either, so it's not like I mention my POTS unless I am really ill or when I can't do something due to POTS. I'm not saying that other people don't have the right to be miserable when they have health issues. I just hate that they aren't sensitive to the fact that I am dealing with a chronic condition and try to compare their situation with mine. It really hurts and upsets me. Do any of you deal with this too? Any advice?

Eating healthy is not all that expensive. If you're eating fast food you can probably eat health at home for the same cost (or even less). The only thing is that veggies don't last too long, so I tend to have to throw things out a lot if I don't eat them quickly enough. You might find it easier to ease into things than to go haywire on the health train.

Maxine, have you tried compression stockings?

I have only POTS and have had only POTS for 4 years with a good amount of improvement, I think most people on this forum seem to have something else too, though! I would think cardiomyopathy (though I don't know what it is) is a separate condition from POTS.

I never eat fast foods and only eat certain packaged foods. I eat bread, cookies, etc. but try to get the fresh baked ones as opposed to Chips Ahoy. I became even more conscious about my diet since getting POTS. I also try to buy organic, hormone free, etc. when available. I don't eat "health food" per se, but more whole foods like baked chicken or fish and steamed veggies. I'm not sure any of this helps my POTS. I just feel it's important to eat this way because I think the chemicals, additives contribute to (if not cause) obesity and health problems in general.

I have to agree with ajw. It seems like since I've been on the board every few months a celebrity or political figure faints, and the cause is usually not POTS. There are many other conditions that can make someone faint. I think POTS comes to mind for us since we have it. But if she does have dysautonomia (not that I wish it on her), it'd be good publicity for us!

What dosage of B1 are you taking? Is it enough to get extra B1 in an oral multivite? I take a high potency multivite which has 50 mg, which I think is a pretty hefty dose.

Rachel, I didn't know about the distinction between alpha and delta sleep until I read your post. But I have been using a great sleep CD called Delta Sleep System for the past year or two. From the title, I guess it's supposed to help with delta sleep! It helps me fall asleep at least sometimes (which is great as I prefer a CD to taking sleep meds). It was only $10, so you may want to check it out. -Rita

I take OrthoTriCyclen Lo. My Gyn thought it would help with acne (which it does) and also with PCOS...although many of the PCOS symptoms overlap with POTS and so I'm not sure I have PCOS in the first place. My symptoms are more aligned with POTS. I would personally try to avoid Yasmin due to the diuretic side effects. You could always try topical treatments for the acne.

Come to think of it, when I first went to my PCP the very day after getting POTS, he told me that I was dehydrated and my issue was BP/heart related. This was based upon my complaint of severe dizziness. He referred me to a cardiologist and it took me a few weeks to get the appointments and testing. But my PCP was pretty much right from day one, which probably gives me one of the fastest diagnoses on the forum. And my PCP is no Einstein, just average. And getting a fast diagnosis doesn't matter much when the docs have no idea how to treat you!

I don't think eating meat affects POTS symptoms for most people here - if they don't eat meat it's a personal choice. Usually it's things like carbs or sugar that affect POTS. I must admit that I've never heard of a doctor suggesting increasing meat, although I have heard that it helps to eat protein. I don't think you even have to increase protein all that much, just make sure your meals are mostly protein and less carbs. I don't think your doc would want you to increase saturated fat. There are many of ways of increasing protein in a healthy way: chicken, fish, tofu, nuts, egg whites are all good examples. You can find some more if you do some web searches.

That's very cool. If he is running for office, it sounds like he deserves your vote! By the way, most doctors from/in India are NOT alternative or ayuervedic docs. They probably just rely on more basic ways of diagnosing things since they don't have as much access to high tech machinery.

I tend to get angry or irritable when my POTS is acting up - not always, but often. It's crazy because my mood improves right away sometimes when I take midodrine or put on compression hose. So there is definitely a link for me!

Do your vits have iron in them? I think a lot of people have trouble tolerating iron. I've had good luck with Freeda vitamins. They're free of a lot of ingredients that people are sensitive to (like gluten, yeast, lactose, etc.) and were recommended to me by someone here (Emily, I think). You can also search old posts as this topic has come up before. Good luck - let us know what you choose.

I get these types of episodes when I'm run down or sometimes completely out of the blue. I could just be walking down the street and my HR jumps and I get dizzy, etc. I call them POTS attacks. For me, they are definitely not panic attacks. I'm not positive, but I've always thought of panic attacks as freaking out about a particular thing (like heights or riding on a plane or something simpler), and then getting very emotional, hyperventliating, etc. That doesn't sound like what you describe. Hope you can relax and get some rest over the weekend.

It is possible to have both anxiety and POTS as separate conditions - it seems there are several people on the forum with both. I think some anxiety is common with any chronic illnes, moreso with POTS. However if you're having it as a primary symptom then it's probably a separate condition which requires individual treatment. In that case, counseling and/or medication WILL change your anxiety. If you're not sure about this therapist, it might make sense to consult with another.