gjensen

I have heard of this, but I have not tried it. If you try it, let us know how it goes.

Everything is worse when I get sick.

Good luck Stefanie. I hope this goes well, happens soon, and helps you get to where you want to go.

I will let the women comment on the pregnancy stuff. I have never been pregnant. I did want to say to keep your head up, and to encourage you.

That is great to hear. Sleep matters so much to our overall well being.

That was great. Thank you.

I like my own. Saves me a lot of grief.

There could be a few ways to look at it. One the HR is compensatory, so it may be that the rate and strength is adequate. There also seams to be other compensatory mechanisms. My condition is more stable than earlier into this. I have been sick for about two years. Earlier, I could get big drops in pressure or it would rise. I had no baseline. I had a lot of trouble managing something that was different from hour to hour, and day to day. Now I seam to have more of a base line, where I can predict my results. I still am up and down, but I have more of a norm. What I am seeing now is my systolic drop 10 points, and my diastolic raise 10 points. My resting PP is 30, so my Orthostatic PP drops to 10. This is after an a quick initial drop. If I continue to stand in place, my BP stabilizes, and my PP may return to 20. I will feel like cr@*, but the numbers do not look worrisome. One of my most troubling symptoms is chest pain. I have been clinically diagnosed with coronary spasm, and micro vascular angina. And I agree that I have these problems, but I do not have micro vascular angina in a classic sense. I do not believe that I have any narrowing or hardening. I am convinced my chest pain is mild to moderate ischemia, resulting from alpha adrenergic over activity. My theory is that it is compensatory. Though it seams irrational, it at least has a rational explanation. I have peripheral autonomic neuropathy, and this malfunction there leads to apparent dysfunction elsewhere. Compensatory over activity. So the point is that there is more at work than the HR and BP. My BP can appear normal enough, and my HR may be under control, and still feel awful. Or they can be a little more out of wack, and feel better. These two are only indicators that we can measure. There is a lot we cannot see, or measure. It very well maybe that your HR is enough to compensate for you, at least as far as managing BP.

I am glad that you and your doctors were able to get to the bottom of this. Thank you for sharing.

First, it is nice to hear that you have had some improvement. I hope that you are able to maintain the improvement and continue to improve. I had a similar pattern when I became sick. I ran around and got the run around with the doctors etc. Eventually, I crashed and became bedbound. It was as if everything went berserk. The OI was intolerable. Even sitting up was hugely difficult. Terrible transition sleep apnea, and sleep apnea. I could go on and on. It was a rough period. Many of the symptoms have left and not returned. Meanwhile, my OI has gradually improved. I would and will have setbacks, but the better spells get more frequent, and last longer. Unless I am fooling myself, I have improved from my worst. I have a couple issues that I am struggling with that I did not have before. I hope that they get better as other things have. One is nerve pain, and I wonder if I am improving why that has gotten worse. It is hard to understand this. It isn't as if anyone can tell us what is happening confidently. Neuropathy can improve, though it would be a slow process. In fact, it will likely improve if the cause of the damage is removed or is in remission. The difficulty is knowing the cause, or being able to adequately deal with that cause. It is difficult to understand. Some do get better. Some go into remission, and then flare again. It is difficult to rationalize the irrational. I am cautiously optimistic. I am no where near normal, but I am not as bad as I was. I have never taken more than a single medication. I hope for continued improvement even if it is slow, but I will try to not get to down if I flare again.

I have a quick acting nitroglycerin subscription for coronary vasospasms that is related to my POTS. I could not imagine it being used for anything else in POTS. I could not imagine a worse drug for vasovagal syncope etc. That would be like giving someone cocaine to slow their heart rate. Is this something you have been prescribed? There must be something more specific in mind.

I have not been convinced of any benefits over typical table salt. The minerals it does contain is in such trace amounts that I cannot see realizing any benefit. I guess that you can say that I am skeptical. It is not that it tastes radically different, but that it does not dissolve as fast on our tongue. I do not see where it would hurt or help. For those that prefer it, they should certainly continue using it. For me, I would have to see some actual evidence before I spent the extra money.

I would ask your doctor to clarify his/her concerns, and follow the advice. PEG is a concern for some, and not for others. The internet is full of concerns. Some valid, and some over played. Everyone has theories, and is an expert on the internet. It is difficult to know what is helpful and is not. I would not consider anecdotal evidence unless you have a rational faith in the source. Have you found any authentic studies on it's use, and it's effects? Even many studies are only suggestive, and more is known later. So much that would be bad for us, is not in trace amounts. Is there any manufacturer guidelines concerning long term use? I do not know, I have only heard of the product. If you have a concern, is it worth the benefits? Can your receive a similar benefit with something that does not have PEG? Consider that no medication that we take is good for us and without risk all together. It could be argued that the extra salt is not good for us, and an argument could be made that it is not harmful at all. I have no position of my own. All I can communicate is how I might approach the subject.

Magnesium supplements might work best if taken in the evening. Magnesium can drop blood pressure. It probably will not for most people. Higher than normal cortisol is common with POTS, but try not to be afraid and stressed. Stress, fear, and anxiety makes this worse.

I meant to add that when I first became sick, my standing HR could be 160-200 bpm. Many times just walking across the house would get me to 170. Try not to get stressed. Stress makes this worse. It is difficult to avoid, particularly when it is new.

I think the buffered salt tablets are easiest on the stomach. I salt the food in my meals. I try to eat a serving of potato chips mid day. I drink 32-48oz of Gatorade per day and at least as much water. I add a gram of salt to water 3-4 times per day. It is a lot of salt, but it does help. The Mayo Clinic recommends up to 10 grams per day. Some Americans consume half that much anyways. I have read that others recommend adding 3 - 5 grams per day to our diet. I do not know if it is true, but I seam to get more effect when drinking a large quantity on an empty stomach. I have speculated that we process and digest the fluids differently, perhaps more slowly, when we are digesting food. I, and some others, like to consume a qty. of fluids at once, sipping in between. I do not get as much benefit if I do not drink a lot fast. I drink 24 oz (12oz of Gatorade/12oz water) to start the day before I even get out of bed. It requires qty. and consistency to do any real good. The worst thing we can do is allow ourselves to get dehydrated. If you are disciplined about this, you may see some improvement. It is a pain to do, but it is worth it. Everyone finds what works best for them.

Your standing BP and HR is typical of POTS. The last numbers you recorded is my typical (of late). I can be a little better or worse. My systolic will drop, and often my diastolic will be the same or raise, narrowing my pulse pressure. When I am well hydrated (super hydrated with Gatorade and salt and water), my PP is not as narrow, and I feel a little better.

Nature's Bounty, Advanced Probiotic 10. I could not comment on how it compares. I imagine most major brands would be acceptable.

Lynnie22, I have credited the improvement to the probiotics, but I do not want to be misleading. I have had a lot of things get better. Some to come back, some to stay gone. I could not honestly say that for some odd reason, it did not get better on it's own. I can say that I started taking probiotics, and I did get better. Before it did, I really struggled. I was constantly taking a stool softener or laxative. I do believe in the benefits of probiotics. It would not hurt to take them for some time. I hope that you get some relief soon. If you do not, ask for the study.

It is a shame that everyone has to go through this.

What is BJHS?

I would feel it doing something to. LOL. Whether or not I liked what I felt would be my question. LOL. I haven't tried it, but it sounds like a fun exercise if it is tolerated well.

I had this problem earlier into my illness. Hopefully you will get some relief like I did. I did take probiotics daily for some time, then periodically for maintenance. I do not know whether or not to credit my improvement to the probiotics. Autonomic dysfunction can certainly cause intestinal problems.

Yes, that is a low blood pressure. When I have gotten that low, I have felt bad.

Yes, I have the house to myself during the day. I didn't call a doctor, but I am ok. I have just been dizzy and breathless. I need a pill box Katy, even that I am only taking one drug. Obviously, I am not especially bright. LOL. I woke up twice is what happened. I woke up and took it. Then I fell asleep. Waking up the second time, I took it out of habit. This is a lesson.