yogini

We all need to monitor ourselves and question what doctors tell us. Many doctors assume that salt loading and florinef will help everyone, but that is certainly not the case - especially for those with normal or high BP. But I think many people with dysautonomia/POTS can benefit from salt loading and/or florinef. It might not be everyone, or even most people, but those who can benefit from it shouldn't hesitiate to try it out. That a decision that needs to be made between patient and dr. (There are a lot of incompetent docs out there, so it is important to have a good one and to educate yourself and make an informed decision) I also think studies of the effects of salt on the general population don't totally translate over to POTS patients - our bodies are just different. Personally, my BP is on the low side of "normal". There are days when I feel too weak to get out of bed but then when I put on compression hose and or have a cup of broth I am much better right away. In terms of salt and compression I use less than what is "recommended" for POTS patients and even less than what my doc told me to use. I feel comfortable with this - I would be open to more salt and compression if my body needed it. I also pushed my docs to go off florinef after a year b/c it didn't feel right for me. Paxil is the right drug for me right now, which is also controversial on this forum and among POTS doctors...lol. What can you do? We are in a no-win situation. Whatever we do for our medical condition might have unwanted short or long term side effects.

Julie, I'm so glad that you found something to help - and especially that it involves yoga. Yay for yoga! Julie/issie, do you think that the heart faliure is caused by the increase blood pressure or other side effects of salt? Do you think processed foods play a part? I agree with mkoven. I drink 1-2 cups of organic chicken broth per day. It helps me function, and as a result I am off medication which probably would have other long-term damage. We each have to do what works for us. Incidentally I started the broth after I saw a nutritionist. She said that I wasn't getting as much salt as the normal person - since I don't eat too many processed foods.

My cardio had me try this when I first got POTS and was extremely dizzy upon standing. He said there were studies on it. At the time it helped me a little with standing, but other than that didn't do much for my symptoms. If you're able to be on your feet a bit (which I think you are?), I'm not sure how much it'll help. But you should definitely try it...not much to lose!

Hi. I wouldn't worry about this too much. Beta blockers are out of your system within 24 hrs. It is not llike florinef, birth control or SSRIs where it takes weeks or months for your body to adjust. So if it doesn't work after a couple of days, you can go back to your old BB and it shouldn't mess with your system too much.

When I first started exercising, I walked in the hallway for a couple of minutes. Also stretching or any kind of exercise you can do lying or sitting works well.

I think if you have POTS and any other condition, there is more than good chance that they are related. Especially if they occurred around the same time or if there are any overlapping symptoms. It is hard to know whether POTS causes other conditions or other conditions cause POTS. Just not enough research at this point, but I happen to think it's the other things which either cause or trigger POTS - viruses, EDS, Lyme, mast cell, thyroid issues, pregnancy. Fortunately, I think most people do not deteriorate in the long run "just" from dysautonomia, but only time will tell.

Hi Dianne. Thanks for the info. I think managing blood sugar, carbs is linked to POTS for many of us and tht drs haven't made the full connetion. I'm definitely curious to see how your dr's appt goes.

Usually, but not always, I find that either my heart is beating to fast or my BP is too low.

Natalie, I've been doing yoga for 3 1/2 years, and take CoQ10 and Garden of Life Perfect Food vitamins. All these things help a lot. The peanut butter is the only thing I've added recently, so I'm pretty sure that's what's giving me that extra boost. It sounds like you have the right kind of cinnamon. Good luck!

Sue, thanks, I'm pinching myself, but so far so good. Reen, I've had it with toast, steel cut oatmeal and celery. But usually I mix it in a little bowl and just eat it w/ a spoon. Either 1 or 2 tablespoons of almond/peanut butter mixed with a little pinch of cinnamon - maybe 1/8 teaspoon or less. In the morning and then sometimes again at night. Let me know if it helps you!

I'm always trying new diets I see on The View. So one of them I saw a couple of weeks ago talked about using almond butter at night to manage your blood sugar in the morning so you don't wake up tired and hungry. I usually get tired and hungry until mid-day, so I decided to play around with this and eat almond butter in the morning. This actually helped me feel a lot more energetic. THEN I decided to add some cinnamon to the almond butter (I had this from a prior "cinnamon tea" diet also to manage blood sugar. I couldn't handle the tea). So the cinnamon/almond butter combo has been even better. I've barely felt any dips in my energy. To give an example, a coupel of weeks I had to take a day trip for work 1 hr away. Well, by 3 oclock that day I felt so tired I couldn't concentrate. I had to sleep for the next 2 full days to recover. Mon and Tues of this week I made the same trip 2 days in a row and today I feel "normal". In my 7 years of having POTS, I have never made it through anything like that without being wiped out. I am amazed I used to come of my yoga class feeling so hungry I couldn't see straight. That isn't happenign anymore. (I'm not a diabetic,by the way. My blood sugar test always come back normal. I always wonder if I have a blood sugar issue that isn't showing up on the tests.) I am craving sugar and caffeine less. And I have lost a couple of lbs to boot. And it's only been a couple of weeks! Don't get me wrong - I still have rapid heartbeats and POTS symptoms, but I am feeling more energetic. I am almost scared to post it for fear of "jinxing" the way things are going. Just wanted to share in case any of you wanted to try. The best part is that this is really easy, tastes good, natural, etc. You can use peanut butter instead of almond butter and it works the same. I've been swtiching between the two so I don't get bored. Make sure you use real (Ceylon) cinnamon, which you can order online or get at an indian grocery store. Most cinnamon is Cassia cinnamon which doesn't work as well, taste as good and may also cause cancer. I hope this works for some of you the way it has for me!

Thanks for sharing your story. I am truly outraged. Many/most doctors have a hard time admitting that they don't understand something, so when they are presented with a compilicated case tht they can't figure out, they just label someone as crazy. I can't believe they would go so far as to hospitalize you...that is really over the top and sounds like malpractice. I am glad you took the issue to court. It must have been so traumatic and I can understand why it took you a while to post about it! Since getting POTS and hearing other people's horrible medical experiences, I've been more cautious around doctors and tried to give them only the info that they "need to know". I will be even more cautious from now on. I guess anything you say can be used "against" you....geez!

I think it's the getting back up that's the problem, not bending down. Blood rushes into the brain when we bend over, then rushes out when we stand back up too quickly. Even "regular" people can get dizzy from standing up too quickly. For us, it's harder because our blood vessels may not function properly and many of us are already lightheaded. In yoga, they teach you to stand up slowly to counter this. Also, you can squat instead of bending over, to avoid the head rush. Flop had a good (more medical) explanation of this in a prior post, which I can't seem to find now...sorry!

If you have a lot of gas, you might want to get tested for celiac disease. I think a lot of people with POTS have it. I tested negative.

I think reflux can make your heart beat faster, which is probably what your doc was meant. I wouldn't worry about the stomach pushing against the heart thing - that is pretty rare...although I do think that might be part of what is going on with me.

I think the same thing. I have tons of gas. If you do a search on google, you can find posts on different forums about people having gas at the same time they are experiencing arrythmias or tachycaria. I think someone once posted on the forum that they had an xray and their stomach pushed up against their heart. I wouldn't be surprised if something like that was going on with me...

I noticed another post where people were talking about having one leg longer than the other. I don't have that issue, but my stomach sticks out which I think causes pooling (not the other way around in my case). This is the way my body is built - other family members have it but not the POTS. Also, I tend to hunch over - this supposedly closes off your lungs and makes it harder to breathe. I used to have horrible posture until I started doing yoga a couple of years ago. Now I have a better idea of how to sit and stand, and correct myself whenever I remember. I've been standing up straighter and I feel better (which is not totally due to posture, but might be part). Not cured by any means, but much better. Wondering if anyone else has similar issues... and if this contributes to POTS? By the way, one of my legs is a little turned in (noticeable only to me), but I am not sure this is related to my POTS.

I think the best route to getting her back on her feet is to find some treatments that work. Try salt, fluids compression and different meds. I'm an adult. I've had POTS for 6 1/2 yrs. The first year was the hardest and I spent all the time I could in bed. As soon as I started to feel better I ventured out more, started walking, etc, etc. Also, two weeks actually isn't that long a time even though it feels that way. She may be just going thru a rough patch, which can last a couple of weeks. I hope she feels better soon.

I can stand and even walk for long periods of time too. I won't say that i feel "normal" - I am more wiped than the average person. But I can do it. What triggers my POTS is cardio exercise, stress or my menstrual cycle. We are all so different from one another. Have you measured your HR and BP to see what they do when you are walking? How long have you had POTS? I have learned to let go of the fear over time - I took a long time, though!

I love watching this kind of stuff - thanks for the info!

Thanks - forgot I had popsicles in the fridge. I have been freezing - using a heating pad to help me stay warm...which I probably shouldn't!

I haven't been feeling well since Sunday. I've been feeling constantly freezing and complaining that places are keeping the AC too high - of course I always feel that way, but looking back it was a little worse than normal. Monday I spent most of the day in bed. I thought it was my POTS acting up because there were thunderstorms here - I always feel weak and lightheaded. I started getting a runny nose and then a really bad sore throat. Tues night I kept waking up drenched in sweat. Again, I have had this with my POTS. Today, after sleeping hard for 2 hrs in the afternoon, I called my mom, and she asked if I had a fever. Well, I took my temp and it was 102.3! I feel stupid, because I assumed that the fatigue, insomnia, night sweat and chills were all part of my POTS. I can honestly say this is miserable - worse than a bad day of POTS. At least I am used to what the POTS feels like! I called my doc this afternoon and there are no appointments until Saturday, though I can try for a cancellation. He told me to take advil in the meanwhile. I don't think I have the flu, because no nausea/vomiting. It is probably something like strep throat. I wish I would have figured it out sooner so I could have gone to the doc and gotten meds. This is the first time in six years of having POTS, I've had colds and stuff bfore, but never like this. Does anyone have any advice on how to deal with a fever or a cold? If my doc prescibes antibiotics, are there any ones I should avoid?

Talk to your dr and make sure it doesn't interact with any meds you're on. If OK, you may want to try a little and see what happens. I probably have alcohol a couple of times a month now. My tolerance is improving to the point where I have a drink or 2 and just feel slightly sluggish the next day on some days. Other days I am wiped from it. Lots of fluids and salt before, during and after definitely help! Remember, you can also go out and not drink - or pretend to drink - and noone may even notice!

I think most of us here have normal echoes, so if yours is slightly different, it's worth looking into. Also, we often get ignored by our doctors. If yours thought enough of the situation to call you back and ask you to follow up with a specialist, I would definitely go to the specialist. Maybe there is a way of treating it that will help your POTS. If not, at least you tried.

Headaches are definitely a part of my POTS. I used to get them all the time when I first got sick. Now when I have a certain kind of headache I can also almost be positive that my HR is too fast and/or my BP is too low. Usually I can stop the headache with advil and atenolol. In general, even when I was young and didn't have POTS I was always prone to headaches and would get them upon stress, overexertion and during PMS. Luckily the headaches aren't as bad now as they were in my teens.