gjensen

MakeMeErised, first I hope that you feel better soon. I hope that this horrible flare subsides soon. You have to keep thinking that way and keep looking forward to the positives. You know how stress gets, and what it does to us, and how it makes things worse. I have never been to Vanderbilt, so I cannot comment on that. I would guess that you would get a pretty thorough work up, and get some answers, even if not the answer. I really do not have anything good to say, I just hate to see anyone feel this way. I am rooting for you.

Yes, you can get an oxygen meter. I have one. But . . . .this is definitely something to work through with your doctor.

Thus far, my wife has been great. A year into this, and she is as patient and giving as ever. I am very thankful to have a partner through all of this. It probably helps that she knew me for 20 years prior to becoming ill. She has seen me on both sides of the hill. I have seen a variety of reactions from more extended family. I can see that some would not handle it well. I have been "one of those men" that would have wanted to "fix everything". This illness has been a lesson in humility. No amount of will power or control has dug me out of this one.

Good news!

Thank you for the positive story.

It is not general chest pain that I speak of here. I get a variety of chest pains like most of us. The specific pain that I speak of here is positively specific to the heart, and a reliable set of triggers. Unfortunately it hurts most of the time, but grows more intense under certain stressors. I have some other ones, some that I believe that I understand and some that I do not. I get one in spells that can be very difficult to tolerate that I do not understand. I suspect that some of them is vascular. There is so many different chest type discomfort that I get, it is hard fro me to communicate them clearly. Especially that I am not a good communicator. Regardless, I will get this specific one investigated.

I asked the doctors why I felt that pain, and they looked at me like I was crazy.

I think that it is MVP. I am thinking that is why I cannot lay on my side, and I wake up gasping for air. I also think this is why my heart hurts when I am up or exert any real effort. All of these sensations are the same but vary in intensity. My only concern would be it's progression. It is much worse than it used to be. I could be full of it and it would not have been the first time, but I have a pretty good track record going. LOL. I wonder if I could convince my cardiologist to fully investigate it. Even if it amounted to nothing, I would have this symptom behind me and explained. I can hear the characteristic whooshing sound with a stethoscope, but only in and after certain situations. Has anyone else had this investigated?

Rachel, it is a strange symptom. LOL. I felt silly writing the title. Katy, I am short of breath with this to. I am having one of my morning spells, and not thinking clearly, but a pulmonary test and the vagal test did the same thing. It hurt a lot then. CMReber, it is connected to the shortness of breath. It is as if I do not breathe as I should. I am not saying that I do not, but it feels that way. I bring it up because it is getting worse. It has been going on for 6 months?, but it is all of the time now and much more uncomfortable. I do not think I would even try blowing up a balloon now. I know it would be very painful. I do not have any answers yet. I want an answer on this one, because I think it would help me understand some of what is going on.

I read with my sons in the evenings. For some time now, when I am reading to them, my heart hurts. It is not the talking, it is the lengths of time between breaths. Does anyone else experience anything like it? Any number of breathing variations makes it hurt more than it already does. I am seeing a cardiologist, and he has no answer for me yet.

Gemma, mine is May 5th. My new cardiologist referred me there, but I chose where to be referred. Mayo in Jacksonville is less than a days drive for me. 7 hrs? From what I understand is that there used to be two subspecialist there, but now there is only one. This is what they told me. The reason that I asked the question, is if there is reason to think I will not get a complete work up, then I would be skeptical that I made the right decision. That is why I wanted to know. I do not want to spend all of this money and not get a good work up. I want some things to be more clear. I am not too concerned about particular doctors, but actual results. If I can get a complete work up, the results will speak for themselves. My cardiologist referred me under the label dysautonomia and POTS. After reviewing my records, they took me. I hope that I made the right decision. Has anyone went to Florida and got a complete work up? Gemma, I will be glad to share my experience when it has been done.

I have a referral to the one in Florida. Is there reason to think that would not be ideal? I understand that they had two subspecialists there, but only have one now.

16 is getting to where I would start wondering. BUT, what are you using to check it? The wrist monitors can give you readings that are off. When I wonder about what I see, I check mine manually. Often I find that it is not as bad as I thought it was. This is something that you should discuss with your doctor though. I hope that you hear from him soon, and that he settles any concerns that you might have. I am sorry that you are on this run of symptoms. I am there to, and I am not having fun either. Try to stay relaxed. I suspect that it becomes a cycle that is hard to get out of.

I am not especially pale, but I do not look well. To someone that did not know me, maybe not. To those that do know me, know that I am not well by looking at me. I have seen some recent pictures of myself and was disappointed to see what I saw. It was a bit of a reality check.

Just recently, I have been seeing this in spells. It is brand new to me and I have wondered what the change is.

A lot of us have overlapping presentations. Not all of us fit so neatly in a box prepared for us. Most of us do see an increase of NE levels. Higher than what is considered normal, but it is a certain level (line that we cross) that determines whether or not we are considered hyper. I do not remember what level that is. Someone else here will know. It would be easy to look up and find.

That may prove helpful for me to. I would have been thrown off the hyper trail because I have Orthostatic Hypotension on a TTT. I really think that I would test differently on different days.

They sound more and more similar to my own. When I hit the shaking stage, I know that I am coming out of it. I have been having bad chest pains constantly for some time, and I have had some severe spells set it off. Sometimes just sitting up, putting on clothes etc. will get me. It does not take much. I can be laughing one minute, and feeling like I will die the next. LOL. In the mornings when I feel unstable, I tend to take it easy, because it does not take much to set one off. Clonidine did seam to help me. I may need to up my dose. I have a Mayo referral, so I was hoping to hold out until then. I do not know what they will end up recommending.

Mine narrows, and on a beta blocker I saw it widen. It consistently narrows when I am upright, and in spells while I am supine.

Ice Lizard, I gave credit to Clonidine for settling these spells for me. Now they have come on stronger than ever while on Clonidine. I am still convinced that Clonidine was helping, but I may need a larger dose.

Freaked, do you have shaking spells afterwards? Other than the shaking you might have during? I always conclude with shaking spells that are as dramatic as the spell was. Also when I have settled, my orthostatic tachycardia is much lower than my usual. This can last for an hour or so, before I go back to my typical. I have tried to identify a trigger, but there is no consistency. It comes out of no where, or I can be symptomatic for something else prior. Mine are most often in the morning. Almost exclusively. I have grown to be weary in the morning. My BP gets very high, very fast. The highest HR was 220. The highest BP was in the 190/140- 180/140 range. The former by my monitor, and the later one in the ER. My logic with no proof says that it is a neurologically instigated chemical surge. A severe panic attack that I have no control over, no matter how rational my thinking, and instigated by a variety of triggers.

Freaked, I think that Katy made an interesting observation. If that is not what it is, I would be interested in seeing what you come up with. I suspect anxiety/panic as part of my spells. My wife and some friends say no. They know me, and some have seen me go from good spirits to on the floor. And it is no fun. I know there is some anxiety that comes with it, who wouldn't? What I keep thinking to is am I getting a chemical flood in response to the symptoms? Mine are irrespective of mood, that I am sure of. Rarely are my spells preceded by any thought process. I tend to stay rational through the episodes. I just want to make that separation. I tend to get these spells in the morning. They have almost always been early. I wake up feeling shaky sometimes and tend to know when I am most likely to get them. Not always. I am not trying to connect what you experience to what I experience. I see some similarities, so I am sharing some thoughts that I have had. I do not have any answers, or even know how to get answers. I would like to learn how to manage these, because they have become a game changer. I do not want to go the Benzo route if it is not necessary. Regardless, it is something that has to be discussed with a doctor. I really hope that you get some relief soon.

A greater since of gratitude for my immediate family that has been very supportive. My wife has been wonderful. I am very very thankful that we stuck it out through the years. An expanded view of, and sense of humility. A head strong man that has been put down, that maybe could have used a reality check. Curiously, I was on the subject of appreciating the little things when this was coming on. That has helped. A better appreciation for what others go through. I am more sensitive to people that are alone, dealing with a chronic illness, suffered a loss, etc. Where before, I took the tough guy approach, now I have a better understanding. I have read a quote "that none are as sensitive as those that have been skinned alive.". That is probably a paraphrase, but if you picture the sensitivity to being touched it is pretty clear. A better sense of gratitude for the 40 healthy years that I did have. I have been very fortunate to have what I have, and what I had. I wish that I could go back min time with this experience under my belt. I would have been more appreciative, and took less for granted. Before I understood, and through some scary spells, I have pondered my mortality. I think it has been healthy and put things in perspective. The fact is that we are not here forever, but we tend to dodge the subject. What was important is less important now. What should have been more important is now. My youngest son, needed me. He has me now. I am not too busy. I have three boys at home (young men), that have to do some of what I would have. It has made me more of a teacher, and they will be better men for this. I think this has toughened us all up. I have learned that I am not above a debilitating illness. Who would I be to think that I deserve this any less than any other? I am not better than any other. If a ten year old can die of cancer, or if anyone can suffer an illness alone, why should I complain? Really, I have had it and still have a lot to be grateful for. I have met some friends here that I would not have met otherwise. I find myself rooting for people I do not even know, which includes everyone here. I have learned who my real friends are and the family that would be there. I have even been surprised (in both directions) by what I found. I have found family that really is not, and friends that are really family. I know who is who now, and I have to wonder where I would have been myself. I cannot say confidently that I would have been as devoted. I am sure that I would have cared, but I wonder if I would have done as well being there. I could go on and on. This, (whatever it is) has been tough, but in more ways than one - it has been good for me. I look at it has being pruned. A lot of useless, strength draining leaf is being cut away. Maybe, just maybe, I will be more productive where it really matters. With things that count. Not all of the things tat we as people get caught up in that are nice, but in the end does not add up to much.

I think it is too broad of a subject to pin down. I would stay looking at the bright side, and figure on improvement.

BigSky, I get you. It is always fun trying to sort out what to be concerned about or not. MamawithPots, it is scary and it is not scary. It is just not knowing that gives me the most trouble. I want to try doing something about it.