gjensen

I cannot drive, so lying down is my answer also.

I am having a problem finding my "sweet spot". It seams to be different from day to day. I do not formally exercise, but try to do some work in the yard in the evenings. Some days are better than others. There has been a couple times where I felt as if I got myself in trouble. Tonight included. Tonight I did some raking, moving things around. I paid somebody to cut down some trees and decided to move some logs. They are large and green (heavy). I put one of the large ones in the truck, and soon I was like Fred Sanford. It was terrible, and took a long time to settle. It concluded with a series of very uncomfortable PVCs. I was watching my HR. I was straying out of my "safe zone", but nothing concerning (or unusual for us). Something about the additional exertion was too much. My theory right now is that I am getting over restriction in my chest (spasms). This can trigger arrhythmias.

Apparently it is the go to drug (CCBs) for coronary vasospasms. It does not surprise me that it can raise HR since it relaxes blood vessels. We know how that goes. I appreciate your input, and it was encouraging. I am going to call the EP tomorrow and make sure he knows about my low HRs. If he is comfortable with me trying it, I may. I am just not certain that I want to reduce cardiac output, with my HR getting so low. Thank you a lot. I hope all is well with you.

Good luck. I hope you end up feeling like the trip was well worth it. Don't have any tips for trips. I do well until I get on a bumpy road.

Thank you Katie. I have been prescribed it for misc. arrhythmias, SVTs, and "coronary vasospasms". That is what they are calling my chest pains. My main concern is how much it drops my resting HR. My Hr can drop as low as 45 at night. Usually in the 50s. In the mornings it is from 55-65. Later in the day it is 65-70. In flares it trends much higher. These low HRs are new to me. Can I ask you how much it dropped your resting HR? I have not been able to tolerate beta blockers either. They diagnosed me with COPD, from overnight oximetry and pulmonary testing. Ironically 7 months ago my pulmonary testing was called "super normal". I do not want to doubt their judgment, but I doubt that I developed COPD in seven months. Anyways, that is why it is said that I am unable to tolerate beta blockers. Apparently the Calcium Channel Blockers are better for coronary vasospasms anyways. The chest pains may be my largest concern of the three. They can be pretty severe, and have triggered SVTs. I am convinced the more severe "crushing" pains are vasospasms, but not certain all that I experience is.

Does anyone have any practical experience with Calcium Channel Blockers?

I wanted to comment originally and encourage you, but without knowing it all I could not be confident that it was good advice. It sounds like you are making some level headed decisions. You know your situation and limitations better than anyone. I hope tat you do not continue to feel discouraged, or be down on yourself. What I heard you say originally, that you were making great progress. You wanted (and bravely tried) to make the next step. A set back is certainly not giving up. Possibly the circumstances combined with the work environment was just too much at this time. Separation from a long term relationship is a lot to deal with under any circumstances. My point is that it is not that you could not make another step forward. It might just be that large of a step may be too large of a step for this moment. I find it encouraging that you have been improving and that you find yourself making decisions on how to move forward. I expect and look forward to getting to where you are. A friend of mine remarked recently that we spend a lot time teaching our young loved ones to aspire to this or that. Also that we do not spend enough time teaching them to simply live. I am not articulating this point well. I guess it is saying that sometimes going with the flow is making more progress than fighting against the current. Often when we find ourselves fighting against the current, we find ourselves going the wrong way. I wish you well.

The EP at Mayo called my chest pains coronary vasospasms, and prescribed a calcium channel blocker.

I agree that this is true for a lot of people, concerning the SSRIs. It is also not true for a lot of people. There is no way to know, going in, where you will fit in. They do not have the same affect on every individual. I will use the sexual side effects as an example. SSRIs are famous for them, but there are many examples of people that do not experience the same. I was interested in Welbutrin early on, but am concerned about "sympathetic over activity".

I imagine the wait is a challenge, but you are close. I am excited for you. I wish that I could comment more, but I have never experienced anything like it. All I can do is root for you. That is very thoughtful of you to think of your fiancé. It is helpful to remember that our partners and family members go through this to. I am sure that his concern is for you though. I do not think telling your doctor that you were not depressed through tears was especially effective. LOL. I am sure he understands though. I should not have said that I was stable. That is how it is for me though. I am so up and down. I am fortunate that I get breaks though. My breaks are not completely normal, but manageable. I am thankful because some do not get those breaks.

DeGenesis, I did not tolerate Mestinon at all. I have autonomic neuropathy, but can be pretty hyper. Unfortunately, I swing from one extreme to another. I have become convinced that I would "present" a different presentation from month to month. I suspect that others would also. Anyways, Mestinon put me into a "super hyper state". I tried it four times to be sure it was the drug, and all four times was a bad experience. I was disappointed because it helps some people. I was excited about trying it. I have had a hard time knowing what to try next. I have started wondering about an SSRI.

I had no trouble getting my PCP to prescribe clonidine. It has many off-label uses such as migraine prevention, treatment of ADHD, PTSD, anxiety, insomnia, agitation, akathisia resulting from psychiatric drugs, etc. It is not addictive or habit-forming, although if you come off of it quickly, you can experience rebound hypertension. Make sure your doctor does not think you are saying clonazepam. I already have it. I have been taking it for 11 months. I only mentioned that the cardiologists that I have dealt with doubted it to be helpful, based on their limited perspective. I am not saying that they are all like that, but that it was my experience.

The EP @ Mayo just prescribed me a calcium channel blocker for the SVTs. He did not like the Clonidine. This is with the understanding that his mindset was the arrhythmias, and OI. That is what I was seeing him for. Nothing else. We never even discussed all that goes on with me. I have found the cardiologists often do not get the Clonidine(though my prescription came from a cardiologist). I have seen more acceptance from the neurologists that have a better view of the big picture and all that it involves.

Very good to hear.

I appreciate this exchange. I get runs of SVTs, and they are no fun. Fortunately, I get them in clusters with breaks in between. I will have a week of them, and a month without them. I do not seam to tolerate beta blockers very well.

Looks like a lot of people will be rooting for you tomorrow Katy. I will be one of them.

No worries Sarah. I am stable right now, so I have nothing to complain about. Thank you for wishing me well. It sounds like you are going to the right place. My family and I will say a prayer that this leads to answers and effective management. Also that all goes well between now and then. Looks like June is a big month for quite a few people on here.

Katie, I will think of you while on my trip to Mayo Tuesday. I will look forward to hearing how it went. I like to hear that you have the support that you do. Even from your fuzzy friends. I wish that you were not terrified. Wish that I could say something that would change that. At least wait until Tuesday. LOL.

Raisin, I take .025 twice per day like DeGenesis mentioned. I like twice per day because it is not long acting. It was suggested by a doctor that I up the amount and take a beta blocker, so it is done by some doctors. I would not feel bad about asking about it. I asked for my prescription. I wanted what you want it for. To manage the surges. I also suspected I was hyper at the time. I did present similarly for some time. I have realized since that time, that I present differently in different spells. Right now I would call myself neuropathic POTS. I have POTS and I have autonomic neuropathy, so makes sense to me. I have had my catecholamine levels checked and they were low normal at the time. Cortisol was normal. Dopamine was low normal. A 24 hour urine test and blood test. Not with a TTT, but like I said, I am convinced that I would get different results in different spells. Either this illness fluctuates and changes back and forth that much, or my condition is changing. Yes, let us know how your appointment with the rheumatologist goes.

She did the right thing. She will be in a good place while they check that stuff out. Symptoms of heart problems etc. can certainly come and go.

I credit clonidine with reducing the frequency of my surges. It has not eliminated them entirely. It has not lowered my blood pressure. I am on a very low dose, waiting to see what comes of the Mayo trip.

That sounds great. Maybe not great, but great that you feel understood. It seams that you are encouraged by this doctor. I would be to. It was encouraging for me to hear. I get syncope/pre syncope without low blood pressure. Sometimes it is low, but sometimes it is normal or high. I have been looked at like I was crazy when I have said that. I hope this leads to better management of your symptoms.

Yes, I have this issue. And many times others. Right now I am getting the chest pains and palpitations as I drift off to sleep. It keeps waking me up. I struggle with getting to sleep. That is why I am on here at this time. My HR gets low like that while I sleep. 42 and 45 was my lowest recorded HR wile I slept. 50-55 is more typical of late. There are a lot of physiological changes from wake to sleep and sleep to wake. I think a doctor knowledgeable with these things can help you manage it so that you can get better sleep. We need sleep as much as anyone. I know that I do. I am better when I am getting good sleep. Good luck. I hope that you can get this managed better. Worrying makes it worse. Listen to your doctors, but try not to worry about it.

Rachel, I do not have an underlying cause to share. I can share that Mayo is going to do some additional testing related to amyloidosis, MGUS, etc. One of my tests came back abnormal, so they will do a 24 hour urine test, and a fat aspirate (?). I see a hematologist when I go back. There are so many possible causes.

Some poultry breeders in the 1800s gave there confined breeding males semi dry horse feces. This is the pre antibiotic days. They did not know why, but what they saw was an improvement of health and vigor. The birds were under pressure from many possible micro organisms or parasites in the digestive system. The improvement in health was as a result of better gut health. They misunderstood it, but they were giving their birds probiotics a couple hundred years before it became fashionable. Sorry if this is too much information, but the point was the importance of gut health. It is it's own ecosystem.