yogini

it is complicated. I was on atenolol every day and weaned off and now I take BBs only as needed. It also depends which beta you are on, but generally you're not supposed to yoyo on and off. You have to make a choice - either take it every day or only once in a while. It can also be dangerous to stop abruptly. Your doctor can help you figure out what's best for you. I feel much much better now that I am taking Paxil every day instead of atenolol. BBs were very helpful for me at my worst, but really made me tired. They still work well as needed to help me out of a flare.

Many of us tend to have slower digestive systems. Some even gave gastroparesis. Bulkier and harder to digest foods like fiber draw too much blood to the stomach area for me and make my reflux worse. Carbs help my reflux but are also bulky and cause pooling. I think the best food for me is protein.

So sorry to hear this. Is there any chance this will make your POTS go away? Maybe there is a bright side to all of this. I know surgery is scary/risky, but there might be a silver lining. I also agree *** MomtoGiuliana to just take it one day at a time. You never know what the specialist will say. If you have doubts, you can also get a second opinion to confirm the surgery is necessary. Good luck!

Talk to your dr, but he same thing that you do to increase your BP might help with your HR. Your BP may actually be higher because your HR is faster When I have rapid HR and normal BP, I often wear compression hose and that helps lower my HR. This is the same reason that many BP meds help with POTS - if the body is able to maintain BP on its own, it can ease the burden on the heart. I've also used beta blockers on those days where the HR just doesn't calm down on its own.

If you feel fine without limitation I would enjoy it. I think there are few if any here that have that, especially without meds. It doesn't sound like you need to worry about something hidden going on.

Even though the word syncope is in the title, NCS does not necessarily mean that you faint. Another name for it is NMH. OH just means you BP drops when standing, which is a form of dysautonomia. Im not a dr but in literature, the docs seem to agree these and POTS are all part of the same family. Kelly is right - question is whether your overall symptoms have changed/improved since your original diagnosis. If you are feeling better, that is great. I do agree that we DEFINITELY need better and more consistent trmt/diagnosis. We will get there. In the meanwhile, I think there are effective treatments out there which can work independent of classification.

OH and POTS are different variations of dysautonomia. There are some people that have been diagnosed with both forms, other drs you can't have both forms. A lot of confusion/inconsistency out there on diagnosis and classification. Regardless, treatment and symptoms are generally similar. Also, on any given day, your symptoms could be better or worse for lots of reasons. So the TTT could mean that you have improved, or not. Though if your HR came back down even once, that is always a good thing!

I do think others here have gotten in right away after applying. It depends on whether Mayo thinks you are "serious"/declining. They told me I was on the "waiting list" too. I would have never gotten an actual appointment except a co-worker's dad worked there and got me in. Dr. Low told me (several years ago, when I went there), that they are only able to ever see 20% of applicants. They are overwhelmed. I had a good experience at Mayo. If you read through old posts, though, you'll see that many others didn't. It definitely isn't the end all and be all of POTS treatment. I found my proper treatment (SSRIs) from a plain old cardiologist who knows a little about POTS 2-3 years after going to Mayo. Good luck.

I think it's hard for us to know which drug would be good for you without knowing all of your symptoms. It really is a decision that needs to be made between you and your dr. I know that's not so helpful when drs are clueless about POTS. If it were me though, all other things being equal, I would go with an SSRI over an SNRI. SSRIs are commonly used (and have been proven in studies) to treat POTS, so if you take one for anxiety, the added benefit could be that it helps your POTS. I would recommend going slowly with any new med you try - that helps ease in the side effects. I know it is scary to try a medicine, but just think it may help you. Try not to read the stuff on the internet because everyone's experience is mixed. Rememeber, even if some meds have side effects, all of these medicines help some of us and you'll never know until you try. Unfortunately, it is just a long road with POTS. I hope you feel better soon!

Wow, that sounds rough. I would ask the dr if it's common to have such a rapid decline in vision so quickly. If you passed a vision test just a month ago, that is really strange. Floaters, blurriness and loss of vision aren't unusual with POTS, but mine come and go. I haven't heard too much about blindness in POTS and not sure about the red rings. Hope you find some help/answers soon.

I felt an increase in the day or two leading up to the storm. I felt better as the storm got closer. Today I feel normal. I think it's easier to breathe after a storm in general - cleaner air and negative ions. I hope everyone escaped with not too much damage. I was most worried about POTS acting up and it didn't. Sounds like I will be out of power at home for a few days, which means no running water and will have to take the stairs 10 flights up. Stairs are the only part I am worried about. Honestly, compared to my worst days of POTS, a few days of discomfort/inconvenience doesn't seem like a big deal.

Talk to your dr or pharmacist as soon as you can.

Do you live near any of the doctors on the DINET list? I definitely wouldn't assume that going off of your birth control is a last resort. There are just so many medications and treatments out there and mroe being developed all the time. If one beta blocker doesn't work, it could be worth trying another or a lower dose. Also, sometimes you need combinations of things or a baby lower dose, or trying it in combination with a medicne that increases your BP. The list of combinations just goes on and on. I also think you are lucky that your drs at least believe you have POTS and are willing to consider your input. There are a lot of people that aren't even believed. I was able to get treatment by suggesting things to my dr. It takes a little work to read through the literature, but it is worth keeping trying.

I'd talk to your dr. As Alex said, usually POTS related PVCs are not considered dangerous and definitely not worth putting your life on hold for. You can note when you are getting these and see if there are any triggers you can avoid. Feel better soon

Have you tried going gluten free? I'd say try it. It can't harm any other than being inconvenient. If you start to feel better you know you're heading in the right direction. Might be easier than trying to get an uncooperative dr to interpret the test. I think more than a few people here have found they felt better gluten free even if they aren't celiac.

You may want to PM some of the people on the forum who have tried this therapy. It seems like people get it when they are very sick and/or rapidly declining, likely with other conditions in addition to POTS. It seems to have helped some, and given others severe reactions. Would be interested to see what your dr recommends.

Wow, you were a yoga teacher? That is really amazing! I didn't start yoga til after POTS and don't think my body could handle the teacher training. I know it is brutal even on healthy people. I'd do a heartbeat if I could. I hope you feel better enough to teach again soon.

I would ask the dr whether to change your meds. Each med works if fervently and for some of them you might ave to be off or a few weeks to be sure they are out of your system. If you are having symptoms with the meds the. It shouldn't matter you are on them. I would not wear compression while on the test. By the way I am not sure there is a mast cell connection with all forms of POTS. I don't have any mast cell/allergy type issues

I can tolerate the flu shot with the same side effects as a "normal" person may have, You may have immunity for this season after already getting the flu, so ask your dr whether you still need the shot.

If you filled the precscriptions in the same pharmacy, they should be checking the interaction for you. And usually your PCP should asl for all the meds you are on before prescribing something. It's not a bad idea to ask one of your drs just to be safe.

I have this sometimes in my right eye - though never got any treatment for it.

Alex, thanks for the info. I had never heard of the atlas or that it could be adjusted. BTW, Ashelton, I am also skewed to the right, but my yoga teachers say that everyone is uneven. The spine is part of the central nervous system. It'd be interesting to know, though, how it impacts the autonomic nervous system. There must be some connection.

If your BP is low, though, at least you don't have the high BP headaches others were referring to.

I would talk to the dr or pharmacist before adjusting your dose. I think florinef takes a little while to kick in, so it's hard to know whether you could be having issues adjusting that will go away in the long run or whether it doesn't work for you. Florinef is one of the POTS meds that is tougher on your system, though.

Ah, NM, I do know that breath when you roll your tongue, and I can see how it could make POTS worse. I totally agree with all of you that having a good teacher makes all the difference. I've tried a bunch of studios/teachers to find my way around that. I like yoga studios better than gyms, as they are quieter and more focused on the student. All good teachers tell you to modify any time you need to and and help you adjust your practice. There are lots of people with all kinds of injuries in class, so it doesn't even feel weird to do your own thing. Chaos that is amazing that you have found a teacher that can work with you with EDS! As for the head rush, even if i cant squeeze any other yoga in, I try to do a handstand and headstand every morning! Trying to hold myself up away from the wall. I don't have autoimmune issues, so am not sure I have any inflammation in my body. Didn't know yoga could reduce inflammation so that is interesting.