gjensen

Becia, did you get any Ensures? They and other brands helped me to keep my weight, and then gain back some weight. They are nutrient and calorie dense for the small quantities, which was helpful for me. I wish you well tomorrow.

Good news Rosey. That should get some weight off of your shoulders.

badhbt, was there a trigger that set it all back off again?

Khaarina, I agree with you 100%. It was one of my early clues that something was wrong. A lot was changing and fast. I can look back and see a cloudy view of progression. On the other hand, some of the symptoms I have are disturbing and they bother me. So I can speak for myself saying that dysautonomia has gotten in my head a bit. Only natural that it would, and then coupled with a heightened sense of alarm . . . I can honestly say that I have an anxiety issue. Never thought I would make that admission, but I am much more sympathetic to people that has had to deal with it. It is no fun. So for me, at this point, I feel it is safe to say that it is both. I am like you in that once it is started, it is hard for me to shake it. It takes some time. I find myself trying to avoid triggers.

I am just going to mention that my anxiety level is up today. I was not like this before POTS (or whatever it is), but I am now. Now is it because of the POTS or has POTS "gotten into my head"?

I am going to try Butchers Broom and Pseudoephedrine (Not together). Earlier on, I would have thought either would have made me more symptomatic. Now, I am guessing that it could do the opposite. I did mention this to the doctor, and he feels it would not harm me to try. I will start small and slow. If I do not like either, I will throw it away.

I had a TTT with a 85bpm increase, and one with a 32bpm increase. I have some mornings where I would not be or barely diagnosable, though infrequent. Then some mornings where the change would be 3x what would be diagnosable. Usually in between. Once it went from 75 - 220. A 145 BPM increase, and fortunately this one was documented, because at the time I was having a hard time getting anyone to take me seriously. What was the result of your test? I have had mine misinterpreted twice. A lot of doctors do not understand this adequately. What are your other symptoms?

I am expecting to hear good news, Rosey.

What I wonder is how much is to much.

There are a number of conditions that can interfere with your sweat response. Everything about any of this is certainly complicated. Wish you well on your visit, and let us know how it goes.

I was curious about midodrine for me. The concern was would it increase my bp too much? I have normal blood pressure, with episodes of high bp. I want to try the florinef instead. All I am trying to accomplish right now is manage the head symptoms. That is what is holding me back. I have been experimenting with licorice root, and I think it helped a little bit.

A number of conditions can cause wide pulse pressures. My first guess for a POTS patient would be vasodilation. Since it represents the change in pressure in between. When I tried a beta blocker, along with a big drop in pressure, I had a much wider pulse pressure. I came to the conclusion it was the vasodilation from the beta blocker. Did you get off of the midodrine, or do I have it wrong thinking that you tried it? There is a lot of things that can cause wide pule pressures.

Dave, good for you to be able to do what you are doing. That is a plus right there. I look forward to being able to do that much. You know how I am with the head symptoms, all of the time. Just lifting my head is an issue. Is your head symptoms while sitting new? Anyways. I was curious what your blood pressure was up right, and compared to what it was before. The same? 120-130/70 is still really good blood pressure. I would not sweat that one point. It seams that you are trending better, but you are not feeling that way? It really does seam to be a shift or change, but the numbers say positive. Higher blood pressure that is still good with a lower heart rate tends to mean stronger and more efficient. Since you have a good relationship with your doctor, I would say let him know about the changes. Just so he is on the same page. I hope that this is a positive direction for you. You have a good common sense approach to this.

It is an issue for me. Every day, all day. I do not get a panic startle, but it is exaggerated and uncomfortable. This is a symptom that came early, and has progressed a bit. Also a sound sensitivity. I knew there was something wrong before there was anything wrong. If that makes any sense.

Good for you! I like hearing the good news.

I have noticed no negative effects. I think they help me a little bit.

I imagine it is a challenge with your young ones. I am like you in that I am optimistic most days, but then I have days where it gets to me. I am also like you with the HR. That is the least of my concerns most of the time. For me it is my head symptoms that is the most debilitating. Someone will chime in with some nausea tips. Don't get feeling like a bad mom or getting down on yourself. As a father I can relate, and that is my largest emotional concern. I tend to get down when I consider how this affects my boys and my wife. It just makes matters worse though when we get down. I used to tell people to not worry about the things you cannot control, and it is good advice. Advice I have had trouble following lately. I really have nothing to offer, because I struggle with much of the same things. There is a lot of people on here that are pretty sharp and with experience. Good luck to you.

I hope so to.

No. I do not have anything, and I have everything. LOL. Really, I do not know where I fit in. I am like you, I live in a State and area where there is no one near by. Kind of manipulating my way through with what I have. I certainly would not be a good reference. I know that I get adrenalin surges. They can be rough. Have not had any bad ones in a while. I know that blood pools in my legs/feet and my stomach. I can see it. I know that I have tested positive for neuropathy. I know my most debilitating symptom is my postural head aches with the misc. Now supposedly, I have csf fluid leaks. I have tested positive for ANA antibodies, and I know my TTT results. I wonder why you could not find an endo that could not get that test right?

Can you get adrenalin surges without being hyper pots? I tend to get my spells in episodes, but I do not think that I present that way otherwise. The clonidine tends to keep them in check for me.

Thank you Rosey. I am not going to get my hopes up, or try not to. The most I could hope for is one lead leading to another. Swallowing trouble was my first symptom. That is how I lost so much weight. I was working hard and not getting enough food in me.

I had a down moment. You guys know the ups and downs that go along with this. I feel for everyone here. I can settle with most of it, and I do not want to get full of myself. I can get a bit touchy when I feel my family is at risk. I have been very fortunate in that respect. These guys deserve no harm. A very loyal, good natured, and respectful bunch. Sometimes it is good for us to get our bubble busted, but they are not in that category. When that guy did not do what he said he was, it was more that he did not do it for them that bothered me. The Duke neurologist said that he would gladly fill it out. He explained that he thought it would be better for the in State guys to do it, but did not realize they would not be willing. I sent the cardiologist a message and he called to apologize, but all he had was excuses. I did not mind telling him that. He is clear on my position. My concern now is the next patient. There is no sense in the silliness. Do what you say your going to do, or do not make a commitment you are not sure about. Anyways, I digress. The Duke neurologist called me this evening and he found some things that he wants to investigate. He is supposed to be putting together a team to investigate it. He is also supposed to be looking for a place to get an upright MRI. Apparently, I have an abnormal amount of CSF sacs along my spine. He thinks that I might be losing spinal fluid when I stand. Looking at the report they are all up and down my spine, on both sides and some with some size. I was skeptical when he first mentioned it. Looking into it, there is a connection to connective tissue disorders. So maybe I can get a Chiara (sp?) malformation investigated while I am at it? Maybe this why I am getting such horribly debilitating head symptoms associated with being upright. That is what he is thinking, and the reason he did this additional MRI. Guess I have more to learn. Thank you for the support.

I was on a selective blocker and it still gave me fits. It was still listed as a possible side effect.

I am sorry to.

I would try to get the levels checked then. You know how it needs to be checked, but the doctors might not. Since you are able to function otherwise, it might be simple enough to make that one point a bit more manageable. I get this, but my presentations seam to overlap. I do not seam to fit in any one place. I am not sure what to make of me. Clonidine seams to keep my adrenalin surges in check, but I do not know what to make of the rest of it.