yogini

I haven't tried drinking that much salt water, don't think I could stomach it, ut I do drink organic chicken broth followed by lots of water. It is quite effective.

I could swing, but get motion sick/car sick very easily. I can't read in the car or eat before going in the car. I loved amusement park rides, but could never go on any ride that goes round and round. Actually, I get sick just fom looking at those rides. But I have friends worse than me who don't have POTS.

Yes, there is lots of hope. I have gotten a lot better through the right meds, followed by exercise. I started to feel better after about a year, but it was 4 years into it (when I was tired of side effects from BB) that I decided to try Paxil, which made me functional. So I think if what you are doing isn't working, it makes sense to keep trying. I were in your situation, I think I'd feel exactly the same way you do. It is frustrating to be trying so hard, not feeling better and not getting much help from your drs. I hope you are able to find a better dr and get on the right treatment plan.

The ones I used were AM/PM Stretch for health, Pilates Complete for Everyone and Yoga Shakti. The stretching one is the best if you are just starting back into exercise.

My situation is the same as MomtoGiuliana I got better over time, with meds, exercise and learning my limits. If I don't do cardio, don't have more than an occasional drink and get my rest, I can pretty much stay in the zone these days. I did have some good days/periods as I was improving, as jangle describes.

I work and have worked almost throughout having POTS. I did make a choice to take a different kind of job that would be easier on my POTS. I think most of the people who work are probably too busy to post. There are a lot of different factors that play into whether someone works - some people here were already stay at home moms (which of course is work too, but different), others have a spouse or parents to support themk and some have to push themselves because they would literally have no roof over their head. I am not sure that the type of POTS (hyper or non hyper) makes much of a difference in the ablity to work.

Autonomic dysfunction means that our autonomic nervous system oes what it feels like. Our BPs and HRs can be all over the place. It can take a little getting used o, but usually is not dangerous. Beta blockers are one of the most effective meds out there for POTS, though they don't work for everyone. seems like a good thing to try given that you have high BP and high hr. you should ask your dr or pharmacist whether you should hold off staring te meds or just stop it around the tme of testing

What type of treatments did you receive? Was it just biofeedback or something else?

There are lots of people here with severe nausea and even a separate forum for that, I think. Maybe some of them will chime in. You can also try searching thru old posts.

I definitely felt bad before i felt better. There are a lot of ups and downs. I think that is what all the people saying "push though it" mean

Yes, if you are bedridden, sitting up could be helpful. It sounds like you are moving in the right direction. I would not read so much about things as that may just be more discouraging. Amd let go of your past decsions/mistakes. The important thing is to move orward. If you have been to cleveland recently, can you call them and ask for a treatment plan? As for meds, that is a very personal decision. But there is a chance that one of these meds could help you get on your feet right away. So that you could walk, exercise, etc. also, there are nonmedical treatments. have you tried things like compression stockings?

I have been exercising for years and not cured of POTS, though improved my functionality. I dont think it has changed my resting HR at all. I'd say that I felt slight improvement starting a couple of weeks after exercise. If you gave up running only for a month, though, you may not have lost the benefits of your prior exercise. And 70 is quite normal for a resting HR.

If it stabilizes back down to 80 bpm in a few minutes, in my opinion (I am not a Dr) it doesn't sound like POTS. For me my HR stays up (and keeps going up the longerI am on my feet). I have never heard the rule of 120. for POTS it is a 30bpm increase, but it needs to be sustained.

While everyone can have an opinion, it's a fact that muscle tone helps POTS...curing is unclear, but docs and patients agree it can help. Is this person even an MD? Maybe he/she was trying to say that biofeedback can cure you anyway, no matter your physical condition. I have a "minor" case of POTS. I've done a little biofeedback and years of other things that balance the nervous system - like yoga and breathing exercises. They've all helped, but I still have POTS and am dependent on meds.

Yes. I think healthy people have to remind themselves how to breathe in stressful situations. POTS can put our bodies in a state of stress (fight or flight). I do yoga and breathing exercises to help with this.

Dizziness is my worst symptom. How did they conclude you have neuropathy? It heped me to monitor my HR and BP and usually my dizziness was tied to low BP or high HR. My dizziness has improved over time once my HR and BP were stabilized. Meds have been a great help for me with my symptoms.

In reading the piece on fayette, I am not sure the author is attacking POTS. She is just saying that being a couch potato shouldn't be a medical condition. Seems she is misreading/misquoting the medical article.The quote says that conditions like CFS have low exercise capacity just like POTS. If anything, I would be more upset reading this if I had CFS, as it implies POTS is the only one of these conditions really medical. She is also equating bring a couch potato with lOw exercise capacity, which shows her ignorance. Couch potato means you don't want to exercise; low capacity means you can't exercise. As Firewatcher says, I don't think the Dr who is being quoted is saying anything bad about POTS. It also looks like an opinion blog, which is just a random spewing of someone's thinking. It shouldnt carry any medical weight.

I am impressed that any of you can squat with weights. I am proud of myself for being able to do it without weights. Even then I have to come up slowly to avoid getting lightheaded!

Awesome! I think it's great you "made it through". It is all relative. It is a big moment for a POTS patient to be able to survive a day like that and do something that feels "normal". So happy for you!

I think there is a great chance you can improve from being bedbound, especially since it sounds like you arent on any treatments. Odds are something will work. There is really no way to know until you try. Your situation seems pretty complicated and it sounds like you would benefit from peronalized medical advice - can you get to a POTS specialist or a center like Mayo? They can best assess your situation and figure out next steps. we can only tell you what has worked for each of us, but since we are all so different that is only so helpful.

Did you test positive for celiac or did the doc just make this as a suggestion? I dont have celiac but went lactose and gluten free for a month once. I felt better - had more energy, but could not keep up. You can experience withdrawal or a few weeks, so it's hard to tell whether going gluten free helps unless you really stck with it.

Lemons, you are right. There is a certain amount of pain you have to go through with exercise. I had headaches/migraines and nausea. I would have to come home and sleep for hrs. But I slowly started noticing that I could exercise for longer with fewer of these symptoms. Some never see these benefits, but some might if they stuck with it. It is the same thing with medication. Sometimes you tolerate horrible side effects for a few days or weeks before your body gets used to a med. or try a few different kinds of beta blockers or SSRIS until you find one that works. It is brutal and easy to give up, but in retrospect really worth it.

It is hard to know what portion of your symptoms is caused by being in bed and what part from POTS. Can you stand from 30 secs to 45 secs and keep increasing it that way. Can you crawl to the bathroom? Sit in a recliner for 1 min or 5 min as opposed to 30 mins and increase 1 min each day? Take tiny baby steps. Try not to worry, that will just aggravate your symptoms.I would be surprised if standing for a few extra seconds would cause a full flare. I agree with the other post that workng with a dr and getting on some meds might also give you the boost you need.

We all know that exercise helps many and deconiditioning makes people worse. I am not sure how many of us are really deconditioned - the way you would be if you were bedridden. Because it doesn't seem like most are bedridden or wheelchair bound. Also, many push and don't get better. those who are trying and not getting better feel like they arent trying hard enough, which is not the case. I am in the middle because I have improved a lot through exercise (mostly yoga) but i have trouble with cardio. I can work ful time, but could not do dr levines protocol if my life depended on it. And despite all the years of exercise I still need meds. So I understand where others have "pushed" but not improved are coming from.

I am much, much better thru exercise, but it is different for everyone. Like you i had to push through some discomfort/inertia to force myself to exercise. I tried a lot of different forms and to,erated some better than others some made me downright sick. To this day I can't exercise in an upright position. I am almost totally funtional, but still dependent on meds and have symptoms sometimes. I dont think everyone can exercise their way out of POTS. A lot of people here "push" themselves to exercise, but it doesnt help them at all. Also, I don't think most people with POTS are on bedrest. So it is very complicated.