gjensen

Stacie, I do not have any answers. You need a doctor on board, it would seam. Even the little things add up. If you have migraines . . . that is something they look at. Some research, and some legal assistance may be helpful.

To the OP, I wanted to comment because I can relate. I really struggled with giving my work up. I did not have a choice, so it was a matter of accepting it. I felt as if I was saying goodbye. I was fortunate to have some savings, and the company kept me on the payroll for almost a year. Then short term, and long term disability. It bought me just enough time to get approved by SSI, which was another grieving stage. LOL. A frustrating thing is this company would work with me, and put me in a different role. I cannot get there though. I cannot responsibly drive much of the time. I am currently scheming what I could possibly do from home. I was the "bread winner", so I need to do something to help. Kids coming into the college age etc. There is so much that we need to do. I wish you well on the process.

Can you get the results of your test? Not just the summarized report? Maybe you can share the results and share with someone on here. I understand the frustration with being dismissed. Unfortunately some things are difficult to identify. My first TTT was interpreted as negative though it was very positive. They know better now. Keep you head up. You will get answers.

Bigsky, this was a good ER doc that had some common sense. He had a practical approach. I liked him. The main reason I went was the nitro was not cutting it, and I had hoped to get "it caught". It did not work though. It was relieved by the time I was seen. Katy, I will be wishing your mother well. You can tell her that a stranger asked how she was doing.

Psalm, mine did show mild mitral valve regurgitation, and another, but I do not remember which. This was almost two years ago, and I have had no other. I will look back at the results. I am going to have to look up left axis deviation abnormality. I think I know what it is. Yes, the Norvasc experiment was short lived. I did well initially, and I wonder if it did not help some. I think that I will react to almost anything right now. I reacted to Ritz crackers tonight, LOL.

Welcome.

That is right Katy. So far mine is partial, and I am not that far along. It may go no farther, but it did catch my attention. It is just new. I was looking at causes and there are many. Structural problems can read similarly etc. I dare not say much, because I know little about it. How is your mother now?

Thanks Sarah, and Bigsky. I have not had this discussion with my doctor. It was recommended for me to discuss the changes with the doc by an ER doc, but I am not clear on a couple of these changes. This ER doc recommended that I keep a copy with me. He gave me a couple old ones to go with a couple new ones and pointed out some of the changes. These changes are from no meds to no meds. I started reacting to the Norvasc, so it is on hold. No meds again. Bigsky, that is interesting concerning your echo. What motivated them to check it again, or did they note dilation the first time? Keep us posted on that. I would be interested to know. The partial right bundle branch block is not a big deal, it is just new. I am curious more because of the unmanaged spasms, and the sensation of new arrhythmias. They are different than the SVTs, PVCs, PACs, and pauses that I have become familiar with. I am sure that no one will be able to say why. Can't help but be curious though.

Has anyone else here experienced EKG changes? I do not have any particularly concerning changes, but there are changes. I was comparing some old verses new, and there are changes, but I am still trying to learn how to read them. To illustrate one is that I have recently developed a partial right bundle branch block.

Fall-Di, I agree with the advice to get an accurate diagnoses, and complete testing by knowledgeable physicians. I believe your cardiologist revealed the extent of his knowledge and his attitude on the topic. You will not get good treatment there. I hope that things fall in place for you now. If I had to do over again, I would have went somewhere that did a complete autonomic work up by a sub specialist.

Beta blockers, generally speaking, are not a good idea for those with Mast Cell problems. It would seam that it would not be a good idea to combine with Ivabradine, since both lower the heart rate. Alpha blockers do help some with anxiety, and PTSD. Some beta blockers are more help with anxiety than others. Particularly those that are non selective. Both Alpha and Beta blockers can make OI worse. You do not want to take nitro while on some alpha blockers, unless directed by a doctor. Trazadone has actions against a1 and a2 receptors. It does help with anxiety, and is sometimes used off label as a sleep aid. I do not know how it interacts with other drugs etc. Of course this should be discussed with a doctor. I only wanted to share the conclusions I came to.

Fall-Di, it sounds like you are in the right place. I am sorry that you have these challenges. I think that you will find a group of thoughtful and helpful people here. I do not have any particular advice. It is important that we see physicians that are qualified to treat our condition(s). I wanted to ask you if your heart stop after any increase in HR or certainly no increase in HR?

All of these are good points, and this thread was a good idea Katy. I have to have a hobby. I have to have something. I have given up some things, and will have to give up more. That does not mean that I cannot try new things, or modify some things that I did before. I have things that I enjoy tinkering with, and I do not intend to quit tinkering all together. If it comes to pass that I do have to give it all up, I will find something else. One of my biggest regrets is not appreciating some of the little things while I could. I would gladly go back and enjoy the worst of days. Much that bothered me then, would not bother me now, and just to feel ok in spite of it all would be great. What I don't want to do is continue making this mistake. There is a lot that I can still enjoy, even that there is a lot that I cannot. If things were worse down the road, I could easily look back to this time, and have the same regrets that I do now. I do not want to say too much, but I do not want to neglect saying what has helped me the most. My faith. Not the faith itself, but what I have faith in. Where I was "too busy" before, I have no excuse to neglect it now. For me, being good to myself, has become less about me, and more about participating in something much larger and more beautiful than what I can bring about myself. It settles much of my anxiety, fears, and depression. It by no means eliminates all that I struggle with, but it does put it into perspective, and makes it all worth it. I want to add that all of you should be good to yourselves. It would be difficult to find a collection of more brave, persistent, strong, and sober people anywhere. I hope that all of you continue to find ways to be good to yourselves, and have much to enjoy. In spite of the circumstances.

An even seven hours has been the rule for my entire adult life. 10pm - 5am for example. In spells I would have to get up earlier, but I would not perform as well. I tended to wake up earlier when I did not have to go to work., ironically. Then came POTs. It has ruined my sleep schedule. The night time chest pain is the biggest issue, keeping my awake. I was sleeping in to avoid the morning chest pain. It got so bad that my sleep schedule had reversed. I eventually decided to reverse it again. It took staying up all day and night with no naps to do it. It took between 3-5 days to finally get it. Now I am wrestling with the same problem I had originally. I do well to get 5 good hours now. In my better spells, I might get my seven. The quality of sleep that I do get seams better than it was early into this illness. Earlier on it was a very shallow barely sleep. If I could get a grip on the every night and every morning chest pain, my sleep would largely be normal now. The transitions between wake to sleep, and sleep to wake gives me fits.

Thank you to all of you.

pooter18, I hope that you are able to see someone that specializes in these disorders. I also had a doc that wrote possible MSA in my records. That is not the case. These illnesses are difficult enough to not get good diagnoses and treatment. I do not know where you live, or what Mayo you went to. They are not all the same. Maybe you can go back, especially that you are in the system. It might not take as long to have a follow up. I do not know what is best, but I wish you the best. It would be good to here how it goes for you.

OI is not my most concerning symptom. Currently it is on the backburner.

It sounds as if you have already put it into perspective. You are examining both sides of the coin, and deciding for yourself whether or not it is worth investigating. You have been down these roads before, and you know what they are like. I pick that up from the post, and I can relate with that. It is a difficult place to be in. We can be skeptical, but we want to cooperate with a doctor that is trying to help. We need doctors that are willing to consider the possibilities. Sometimes knowing what it is not is helpful. I do not have any advice, and you are not asking for any. I would only point back to the skepticism that you have expressed. I would want to hold on to that, and cooperate with the doctor. I would be reluctant to get my hopes up. If you have convinced yourself that nothing will come of it, but at the same time cooperate with the doctor, you will have protected yourself from a let down. You would have also investigated another possibility, or ruled a possibility out. Sometimes knowing what it is not is helpful. Regardless of what you decide, I wish you luck.

Robin, yes it is frustrating. Now that I am off of it, I am seeing more and more how much it did help. You are right. Our families are the unsung heroes. I am very very fortunate for my boys and my wife. They have all been great to the old man. dkd, thank you very much for the well wishes. Katy, I did not learn anything. It was as I feared it would be. Another cardiologist. I did like him. He took a lot of time, and he was thoughtful. He was apologetic that he could not help more. He did write a new prescription for a new CCB, Norvasc. He took the time to discuss the ins and outs of vasospasms. He stressed taking them seriously, taking the nitro etc. He is referring me to an allergist and an autonomic neurologist there that he believe will be helpful. I do not know when these will be. It is a seven hour drive that I cannot make myself, so we will see how it works out. I have a back up plan in April. My GP has been cooperative, so maybe I can come up with something to get me by until, if the Norvasc does not do that for me. I cannot take nitro every morning and night.

Sarah, she must. She puts up with a lot, and never complains. I would certainly do the same for her. Unfortunately the benzo class gives me some of the worst reactions. I am afraid that the only thing that will let me sleep is to get a grip on these things.

Psalms 23, your thoughts are always helpful and concise. It would be nice if dealing with one, would manage the other. That would be nice. If this was not so frequent of an occurrence, I would probably just have dealt with it. Unfortunately it is every night and morning. Guaranteed. It only varies by degree. Recently, I went through a spell where I could not lay down at all during the day (for three weeks). The local doctor wanted to treat me for pericarditis. Maybe it was, but I wasn't convinced. I was not evaluated for it . . . . Thank you Corina. You always share kind thoughts. Sarah, I tied Trazodone recently. It is supposed to help with nerve pain. I tried it as a sleep aid. One of it's effects is actions on a1and a2 receptors. It did make my OI worse. I began to tolerate it better concerning the OI, but I could not give it enough time to see how helpful it was or not. I started reacting to it. I wanted the sleep aid because my sleep schedule had completely reversed. Wanting to sleep in, in the morning to avoid the spells. Waking up early is the worst. Then the pain keeping me up at night. Eventually, I just suffered it and stayed up all day, after being up all night. I did this for a few days, and was able to flip my schedule. It is normal now, but it is trying to trend back the wrong way. It was miserable, but I pulled it off. The nerve pain and chest pain was off of the charts for that few days. I will head out soon. It is a long drive. I am hopeful. My wife needs a break. She has to put up with me.

Thank you Raisin. I will look into her. I need to write this name down. I am not struggling too bad. I am in good spirits. I was able to prune my grape vines today, on a nice day. That was nice. My Apple trees earlier in the week, though the up and down on the ladder set me back a day (or two LOL). I wish that I had another day to do my blueberries. I hope all is well with you.

Katy, I am starting to wonder the same. I do wonder if treating the one, will help the other. I intend to pursue it. You are right. Dr. Afrin was in my backyard. I was not pursuing Mast Cell then unfortunately. Ironically, when I first became sick I was building a project not far from where his office was. I do have an appointment with a Allergist/Immunologist at MUSC in April. I was not getting anywhere in hematology. I kept getting pointed to this doctor. Maybe if she cannot help me, she can point me to someone. She is my back up plan now. I got the Vanderbilt appointment in a couple weeks. I figured a lot longer. That was my back up. Right now, if I can get the two managed, I will be managed. Until something new. LOL. I do need to get it managed or I will have a bigger problem. I cannot take nitro every night and morning. I appreciate your thoughts Katy. They are helpful. ETA: What has convinced me of the MCA component . . . I took an aspirin the other evening. I used to be fine with them. It felt like the end of the world for over an hour. Everything went crazy. I almost went to the emergency room. It was bad, and I do not get worked over much these days.

Beta Blockers might put me under LOL. I reacted horribly to beta blockers. Three of them. Bronchio Spasms (sp?). I have never heard of Multaq, but I have wondered about Ivabradine. My reactions are allergic type reactions. As far as I know, for some at least, it isn't the drug itself. I do think alpha blockade is what I need as much as anything for the spasms. I am skeptical that it is purely endothelial dysfunction. I am nervous about any beta blockade considering my prior reactions. I might react to Clonidine now to. I didn't before, but that seams to mean little. I am skeptical about the Vanderbilt visit. I haven't had good luck. I keep getting docs that ask me what do I want to try. It is nice to be listened to, but I am not a doing very good job. LOL. All I know about Vanderbilt is it starts with a consult with a Cardiologist. I have had my fill with Cardiologists, but I am still hopeful. I only want help with two things. For now, the rest I will deal with.

BigSky, I wish that I could. I would rather it be that way. Thank you Katy. I don't like it, but I have no choice. At least it is not a difficult drug to come off of. That would not have been good. It isn't fun coming off of it completely that fast, but it is certainly tolerable. Sarah, the coronary spasms have been progressing, even on the Diltiazem. I wasn't able to get to a high enough dose to really help the. I would react at the higher doses. I do have some Clonidine around here somewhere, and hopefully I can still take it. It did help keep it all leveled out. You are right. They happen at night, or immediately upon waking up. I can have the problem at other times, but that is where the majority are had. Every night, every morning. I leave for Vanderbilt tomorrow. My only concern is that I am being worked in on the Cardiology side, and I hear they do not have a Mast Cell doc. I have no hope of getting the spasms under control, if I cannot take any medication for it. If I can get a grip on these two things, I will be partially functional, LOL. Maybe it will at least get me in the door, and good me going in a better direction.