gjensen

They never bothered me before. I can tolerate them now, but I do not enjoy them as I did. I let my boys have their fun. Watch for a bit, and retire early.

I start the morning in one of two ways. Mostly, I start with chest pains and a feeling of being over stimulated. I can go the other way, and feel "depressed" (not emotionally). I would have a lot of trouble breathing etc. Occasionally my HR is higher, but usually it is the slowest HR of the day. Regardless, I do not feel especially well in the mornings. Mid day my HR is highest, and my orthostatic intolerance is at it's worse. It settles down, and I am at my best in the late afternoons and evenings. I will push it in the evenings, and it takes a bit to recover. Afterwards, it is my best part of the day. There are always exceptions etc. This is my typical pattern however. It has noting to do with meds. It has been like this on and off any meds.

I could not walk with the pony I would have to ride it. I also need a reclining saddle. LOL

I have an appointment with Mayo on Sept 9th to test for coronary vasospasms. My local cardiologist has jumped on the bandwagon and is calling it this now. I am not sure what the test(s) will involve, but I will post the results. I would not be surprised if this is another wild goose chase, but this symptom has gotten so bad, I feel like I have to.

I want to try an SSRI, and it has been offered to me. My hang up is serotonin is supposed to be a trigger for coronary vasospasms. I have a problem with coronary vasospasms. I do not have this confirmed but this is what I have found.

That is what I need. Stockings with little roses.

I have not been sick for years, so I do not have the perspective that some have. I have been struck by how up and down this illness has been. I have come to the conclusion that it is the nature of the illness. I have also noticed with myself and others, that stressors can be a trigger. Even though there is often no identifiable trigger. For me, it seams that "calming back down" is my best help. In fact it is the only help I have found. Concerning the fashion statements, you guys should have seen the looks I received from wearing my "panty hose" (with shorts) to the hardware store. I am too old and was too dizzy to care. I was a bit amused.

Thank you Raisin. The SVTs on their own, do not bother me much anymore. They certainly have. Especially when I first experienced them. I still do not like them, but I do not get too excited. Sometimes they are intense enough and last long enough to concern me. When I start getting dizzy and everything starts getting dark, I get concerned. What I especially do not like is the combination of issues that I have been having. I am not 100% certain what is happening, but I do know that it is not good. I am making the judgment based on what it does to me. Fortunately, I had a better afternoon than what I have been having. That is where I will most likely mess up seeing the doctor. It will not be bothering me as much then, and I will not push the issue as much.

Raisin, I am going to put some pressure on my local cardiologist Tuesday. I do not know why I have to drive that far for this. I realize that this is not common, but certainly someone in this State can get this done. What I want is for it to be officially diagnosed or ruled out. I do not want to speculate on this one. Then if it is diagnosed, I want to see if the "why" can be identified. I am going to make a big deal out of it. Apparently they can be especially problematic (fatal) if they go long enough and get bad enough. As bad as these have gotten for me, I want to know. I suspect all of us deal with this to some extent or another. I wonder why mine as gotten so bad. When everything goes black on me, and my heart reacts by doing odd things, I am going to take it seriously. The only good thing about this is that they have not always been this bad. It may be that I get another break, which I will look forward to.

Yes, Get a lawyer. They do not get paid, until you do. There is also a limit on how much they can charge. If you are denied, you need to get a lawyer. You have a good case.

Katy, I want to give it some more time. Unfortunately this is an especially bad flare of this. I keep hoping that this flare will subside. It would buy me some more time. There are more drugs in this class that are more specific to the vessels and/or heart rhythm. This drug has a dual action, and is used for arrhythmias and vasospasms. I hope that we can make this one work. It certainly has an effect on my HR. I also have ad no bad runs of SVTs. I normally do get them, when these get bad. I see a doctor on Sept. 5 that is supposed to be an "expert" in this stuff. As it is, I cannot wait that long for better. statesof, thank you for your input. That is what I am hoping. As it is, I cannot tolerate much more.

Thank you Raisin. I have had the entire area checked out. Unfortunately, it is vasospasms. It becomes more and more obvious every day. The CCB does help, but has not eliminated them. I need more than the starter dose. At this point I cannot. My resting HR is at it's limit, and even my standing HR can be too low for me. If not for the vasospasms, this drug might have been a good option for me. A very low dose. 15mg 3x per day would be helpful for the postural tachycardia. 30mg 3x per day is a little too much for the tachycardia, but not enough for the vasospasms. I am at a loss on what to do next. I may need some nitro as a rescue option. Nitro makes me nervous though. I do have other pains, but I am not certain what to attribute them to yet. I had considered an SSRI, but see that serotonin can be a trigger for vasospasms. I am wondering if addressing the cause of the vasospasms would be my best hope. Is it neurological? It seams that it is. The arteries are essentially doing the opposite of what they should do. When I lay down, instead of relaxing, they constrict. Immediately after waking up, they start constricting, and it is very painful. I read about avoiding triggers. Well . . my two biggest most reliable triggers is lying down, and waking up. That is not good for someone with POTS. I always have to lye down.

I would want to make the doctor aware also. Many will not get worked up at that rate, but it is worth noting. I would want to know what it dropped to while I slept. Mine can drop to the mid 40s at night. I do not want to see it any lower.

It is. Now if I can just get a grip on these chest pains.

Too early to make a judgment, but Diltiazem has substantially decreased my postural tachycardia.

I am not a fainter. I have, but I am not. If that makes any sense. Pre syncope is common. I am unable to drive now. Concerning dizziness etc., sitting is as bad (or worse) than standing. I could go short distances during my better spells, but it is best that I do not push it.

I am glad that you found a drug that is helpful and that you tolerate. I am on Diltiazem 30mg 3x per day, but have been splitting the doses up. I am tolerating it ok, and that is getting better. I have been working myself into it. I have become cautious about meds. I did wake up with a huge amount of chest pain this morning. Frustratingly enough, waking up is one of my triggers, but no SVTs. It may be that I will need a slow release form. I am going to try to get taking it as I should before I comment. 30mg 3x per day is a light dose, but is a lot for me right now. A plus is that my standing HR has been tempered. It seams so anyways. It will take some time to know. I fluctuate. I go from mild to severe, and everywhere in between.

I hope that you get some help for this. There is no reason to feel that way if it can be helped. It does seam to come along with this for a lot of us. "It is not in your head".

MakeMeErised, I am glad that what you are experiencing is being documented. I hope this leads to answers and solutions. Insurance companies have their policies, but they have appeals processes for cases like this. We do not always fit into a box. If you do not get what you need, go to the next level. You may have to push the issue along the way.

Raisin, you and I are in a similar place. I see a hematologist July 15th. From what I understand, it is not out of the question to get unspecified spikes in the results. If nothing specific is revealed, they may want to check it again in the future. I am sorry that you do not feel like you have gotten anywhere. There is noting wrong with taking a step back and evaluating the situation.

I do not tolerate the beta blockers at all, though I wish that I did. I am not enjoying the calcium cannel blocker, but so far I have been able to tolerate it. I see no measurable effect on my HR yet.

Has anyone been diagnosed with this? Mayo is calling my severe chest pains this. What I experience does match the description. They gave me a CCB. I just started it, but so far, no relief. When they get bad, they are triggering SVTs. What I am experiencing now is not general chest discomfort. This is not the "POTS" chest pains that at one point I had grown accustomed to. This is no fun. I was hoping to find someone that experienced this, and had some tips.

I cannot speak for you, but I can share my experiences. A lot of us have episodes of shortness of breath. Some more than others. I have episodes that I would describe as other than typical. It can be when I am relaxing to sleep, or soon after waking up. It can be when I am especially relaxed during the day. Most frequently it is in the morning, soon after I wake up. I seam to have a reduced drive to breathe. The description would be similar to what some might experience having had too much of a narcotic. I know that there is something to it, because I have watched my O2 go from 98 to 90. Even to 88, 89 before. I can fail to breathe in the sleep transition. What has been frustrating is that the spells are episodic. I have failed to prove this problem. I have ad it dismissed at Mayo, and other places. Only the local pulmonologist that knows me is working with me on this. I need to prove it though. Everything is based on test results. I have never seen any evidence of anxiety dropping O2 levels. Maybe I am wrong, but I never feel anxious when I am that tired. Overnight oximetry showed my 02 at 90%. A sleep study sowed my O2 @ 90%. When I am especially relaxed, I have a reduced drive to breathe. More than normal. When I am tired, and I often am, it feels like a switch is flipped. I go into a different breathing pattern, and it is difficult to tolerate. If I was at my worst every day, I could get help. The good and bad of it is that this problem comes and goes. I have had no qualified insight into this problem. Another point that I thought was interesting was that I was diagnosed with COPD at Mayo. The irony was that the same testing showed my lung capacity to be "super normal" a year ago. I am doubting that I developed COPD in that time frame. I do not think you go from super normal to bad in that time frame. So to sum it up, I am not surprised to hear someone say that a stimulant has improved their O2 levels. For me, I do not have the problem when I am stimulated.

I am working on getting a wheel chair. I feel a little guilty about it, because I do not need it all of the time. I have fainted, but not a fainter. I am like Goschi though that sitting upright can be as bad as standing up. A reason I cannot drive. Even if my BP is not bad, I get very dizzy and feel awful. Can't see, can't think, etc. What I want the wheel chair for is to be able to go shopping etc. with the family. That and water my plants etc. on bad days. It may get me closer to being able to work. I am looking at reclining motorized wheel chairs.

Keep the sun off of your skin. I am in the hot humid southeast. I can handle 85-90 ok when the sun is setting. 85 is a lot when I am getting direct sun. You know how radiant heat works. You might be better off with a thin and loose fitting shirt than not. With a cooling vest of course. Stay off of the roller coasters, LOL. Even though I have wondered what one would do to me. My wife said that she would not let me. I am afraid they might be just a little too much. Take a lot of breaks.