yogini

It didn't even dawn on me, but it is a great idea to report him.

I am curious. Biofeedback helps but would be surprised it is a cure. In general, most POTS specialists would know better than to say they have a cure, because we are all so different. I am not sure how biofeedback could help those of us with conditions like EDS and MCAD. Also, I wonder why this particular center is a "POTS Treatment Center" rather than just going to a regular biofeedback practitioner? Not to say this doesn't work, but it raises a lot of questions!

So sorry you experienced that, it sounds awful. One of the worst parts of our condition is the numerous doctors that don't understand and brush us off. Emergency rooms are often the worst places because they don't take anyone seriously unless they are literally dying. I remember being in the ER with my mom after she fell and we literally waited all night for an Xray while the drs stood around gossiping. Urgent care may not be the right place for some of these tests, but that is no excuse for this dr's terrible bedside manner. The best thing to do when encountering a doctor like this is to move on and find someone else who IS willing and interested to help (and capable of helping, haha). With something like MCAD, you may need a specialist in the area to handle things. Though few and far between, there are some good docs out there!

I would agree with Sue that it is more likely to be the effects of the gluten free and not the aspartame. It takes a while for it to take effect.

I went through the whole inner ear thing - went to 3 months of vestibular rehab and then discovered mine was POTS only. But There are several people here with both POTS and inner ear. Usually POTS would not make dizziness worse with head movement - more with positional movement (standing up). Now that you are confirm with POTS you can see if treating the POTS helps with the dizziness - that will be the best indicator.

I'm all for "alternative" things this that help - i think muscle relaxation improves blood low a nd calms body/mind, both of which are great for POTS.

It sound like a big leap between hypo perfusion and brain damage. In my several years here I have never heard of brain damage, plus the top doc told you not to worry. I don't think this is a big concern for dysautonomia.

I have thought about it and would do it for ethical and health reasons if I could. When you learn about how some of these animals are raised it is quite disturbing. I have tried other restrictive diets (gluten/dairy free) and found it too be too stressful. For me just trying to exist with POTS is hard enough without having to worry about diet. I need a high salt diet, which is easier to do with meat. And part of me wants to just be like everyone else - hard enough explaining why i limit my alcohol intake. I cant go hanggliding or stay out til 3am, so at least l can enjoy a burger once in a while. I do like the taste. Plus I have reflux, and too many vegetables/soy really upset my stomach. So I have decided not to push myself in this direction. I do admire anyone who can manage it. Not sure about us, but I do think it is better for the avg person. Friends from yoga and other and friends with other illnesses who are vegan swear by it.

btw, i think this is why treatments that increase BP - florinef, midodrine, stockings - sometimes help people with POTS even if they have normal BP. Boosting your BP another way takes the burden off our poor hearts.

I am no scientist, but I think if you have OH or low BP for any reason, not just due to pooling the heart can beat fast to maintain blood flow to the brain. That it is the "normal" response. Although Dysautonomia is positional, Many of us have high HR and/or low BP even when lying down. I think this is because of general autonomic dysfunction. The dysfunction just intensifies when in an upright position. Also there can be an excessive increase in HR due to activity which is not positional. For example when i wear a heart rate monitor i noticed my HR can increase 30 just from rolling over lying down or sipping watter when sitting. Although betas are commonly understood to lower BP and HR, they are actually stabilizers. In most people this means lowering, but in some people it actually increases HR and/or BP. The mechanism is very complicated, but I think for those receptive to betas, the right beta in the right dose can calm some of the excessive response. If it can do so without lowering BP too much, it helps.

I believe in POTS the heart tries to compensate by beating fast in an upright position to maintain BP. This compensation is imperfect - for me - I have POTS with slight OH. OH/NCS patients don't have this compensation mechanism at all, which is why they are more prone to fainting. In normal people, HR increases a little and veins constrict to maintain BP. Now that would be a dream!

Yes, thanks to Michelle our founder and to all the people who keep our forum such a great place. You have given your time despite your POTS and on top of all of your family, school and professional obligations. I was watching CNN heroes the other day and thinking you should be nominated because you are heroes to all of us. Thank you!

Personally I would have one and see how it goes. I think there is a risk of getting worse, but my POTS is mild. In general the research shows that women with POTS do well with having kids and almost all of the people here who have been pregnant have given good reports. I think Dr. grubb wrote a paper on this recently. I do think a support network is important, but on the other hand I also think you (and hopefully your partner) have to prepared to do most of it physically and financially on your own. Again, a person does what they are able. I know my parents gave everything to raise us, and I see them doing more than thy should have for my healthy sister's kids. I know Iit is hard on them at this age and I wouldn't want to put them through that. If you know before going in that you probably cant, then maybe you shouldn't. Most of us i think would be OK. I would make sure to have good health insurance and also look into genetic issues to make sure you are not passing POTS on genetically. But ultimately none of this would stop me from trying to have at least one. I think you have a lot of time to decide if you are 24! You may even recover from POTS even if it doesnt seem like it right now. There are also other options, adoption, foster kids, step kids, who knows what life will bring! I am psyching myself up by writing this!

I agree with Naomi, everyone's BP goes down at night. I don't think it's a marker for low BV. It's interesting because many of us with normal BV and even normal BP benefit from fluid and salt loading and meds like florinef, which essentially increase BV. so I think it's hard to know if you have low BV unless tested.

Some shortness of breath is normal for POTS, but beyond that i am not sure it is a ANS problem. A lot of people here have breathing problems because they have other conditions like allergies and asthma. If this seems like more than a little SOB I would press the dr or get a 2nd opinion.

Illness puts a stress on relationships like few other things. But then again, life is hard and if it weren't the illness, there would eventually be something else. We all deserve friends and significant others that stand by us through thick and thin. I have parted with two long time friends, "best friends", in part because of my POTS. One when I first got sick and one more recently when I had somewhat of a relapse. In looking back at both of these friendships, both people were always very selfish. I was ill, yet helping THEM with their problems while getting little consideration for mine. The issues were brewing for a while and came to surface due to my illness. I tried to focus on th epeople in my life that WERE there for me, though it was tough losing people that were such a big part of my life. It is a lot harder to build relationships when you are ill, but I was eventually able to do so. While it was hard at first, it can actually be a relief once you move on - not saying any of this will be the case for you, but this was my experience. I like Lieze's advice of just focusing on taking care of yourself and your kids. Counseling is a good idea too.

When you say you can't tolerate SSRIs, have you tried several different ones and started at a fractional dose? There is a bit of trial and error with POTS meds - you may tolerate one Med in a class better than another. SSRIs in particular can take a few months of getting used to, and it can help to go slow and work your way up.

Though it is a bummer being admitted, you are in great hands. I am sure they will find a way to get you autonomic testing/treAtment. I would stay there and don't leave til you get the tests you need! Good luck, let us know how it goes!

That is awesome you are so close to Mayo - if you are fainting, in a wheelchair, DEFINITELY go there, regardless of whether this dr is good.

Although your case might be strange for your dr, your symptoms sound similar to many on the forum. There are tons of people here with EDS and such low BP. There is no such thing as "typical" POTS anyway. I think doctors who don't spend all day treating POTS patients think tht it goes away with beta blockers and improves in a year or 2 and are surprised how severe it can get. I have been told by some docs that I'm the worst case they've seen and I am very functional - i just need a bit more rest than avg person. I was just giving info to one of my friends this week and the Dinet site says 25% of patients are disabled. Doctors dont agree on definitions and Even if you don't have "POTS" you could well have NCS or another form of dysautonomia, which basically have the same treatment as POTS. It is great that you found a dr to work with you. Most doctors wont even call back, seriously!There are lots of treatments to help keep up BP. You may be getting worse because you arent on right treatment. I hope you and your dr find something that helps you feel better soon!

I agree -salt load the night before and again in the am. Eat light/low carb.

This can sometimes happen with an inner ear disorder - have you been tested?

Tanita makes body fat scales and some of their models measure body water. They probably use the same technology. I got mine for less than $50, I think. I do tend to feel better when my body water % is higher.

It's normal for BP to drop at night, but if your BP is aleady too low to start off with, that may be the prob lem.A sleep study sounds like a great idea. Have you tried Paxil or SSRIs? They have been the best med to stabilize BP for me. Another thing that has worked is to drink a big cup of broth an hr or 2 before bed, followed by a couple of glasses of water. Feel better soon.

Mack's Mom, which brand of magnesium do you use?