gjensen

Diltiazem helped me a lot, in a lot of ways. Unfortunately on my ever growing list of reactions, I am unable to take it now. My reactions to it were getting too severe. Now that I am not taking it, I realize how helpful that it was. I do not have much of a choice, but to look into the MCAS stuff. I am reacting to all of the over the counter anti histamines, and now some foods. Funny how all of the things I had been tolerating, I can no longer tolerate. My coronary spasms are getting worse, and more frequent. The nerve pain is getting worse. Ironically, my orthostatic intolerance continues to trend better.

Thank you for sharing this. I had never heard of this connection.

Yes. I could not say how many times I have heard that "something is wrong, but I do not know what is wrong". I understand your frustration, and it is legitimate. Can you get a copy of your actual test results? I do not know how it works there.

I have learned a lot. I needed and received a dose of humility. This experience has been humbling. Where before I strived to have it all under control, I realize that I have very little under control. The autonomic nervous system has a unique way of teaching that lesson. It is a big pill for me to swallow, but I am taking my medicine. Patience. I had no patience, believing that everything had to be done now. I am more sympathetic to other's health challenges. I cared before, but I can relate now. Small is just as good as big. My projects tended to take on a life of their own. They were never simple or small. I always complicated them, and was a bit ambitious. Now I look for ways to do some of the same things on a much smaller and simpler scale. Bigger does not mean better. The preciousness of time. I was too busy. I wish that I could go back, and had more time while I was able to do more. There is a lot of little things that I would have like to have done more of. There is some regret in this, but regret is a good teacher. Though not a kind teacher. Satisfaction does not come with what we do or can do. It is like trying to fill a bucket full of holes. It can't be filled, and we cannot be satisfied in that. In all of our inconsistencies, and the ever changing nature of this illness, the sun comes every day. The sun goes down every day. The birds sing every morning. For me, there is a simple reassuring calm in that.

Thank you guys. Rachel, sorry to have side tracked the thread. Issie, I am looking into it. I do not have the diagnoses. I have not found a doctor for it. I am eager to see a doctor for this. My cardiologist says that I have pericarditis (I am not convinced). Can't take the meds. I made the mistake of taking an aspirin tonight. Big, big mistake. I am still paying for it. I even react to Claritin, and Benadryl of all things. Two vitamins etc. Lately, it has been everything I have tried. Everything. Sarah, I have Neurontin now in a liquid form so I can start very slow. I wanted to get a grip on this apparent mast cell thing so I had a better shot at being successful, but may not have that option soon. I might chance it anyways.

I need to figure something out. I am miserable. My OI is better than earlier on, but my pain is off the charts now. I am apparently allergic to everything, so I am not sure where to go next.

Statins can cause neuropathy to. I never did take the Statins I was prescribed. I did not agree with the reason it was prescribed. I appreciate you sharing your experiences.

That is interesting.

I do not know what would help. Hopefully someone here would know.

So can we what we treat it with.

I believe that anything that stimulates the immune system, can make POTS worse.

When I first became sick, bumpy roads sent me on a roller coaster. That has sense settled. For me anything that is stimulating or stressful complicates my POTS. I have not been driving, but I intend to try again. I was getting too dizzy to drive responsibly. The position that it required me to sit in, gives me some trouble.

With all of the symptoms that give us grief, I like to focus on the most concerning. One thing at a time. What troubles you the most?

I wish that I had noticed this when it was posted originally.

I should have been more clear. Some time had passed before I laid back down, but the nitro could still of had some effect. What troubled me was it was the laying down that brought the arrhythmia and fainting feeling on. It continued through the sitting up when I began to sweat. That is what I thought was odd. That it would happen upon laying down. Then the sweating which would be new to me. Libby, I thought about calling the cardiologist today. I did not do it though. You are right to suggest caution. My gut tells me that it was not good. angelloz, it is interesting to hear that you have chest pain that follows an evening/morning cycle. Mine does religiously. Every night, and every morning upon waking. Mayo called it coronary vasospasms. They do tend to follow a pattern. They can be problematic. They are hard to catch though. I have not had this caught, so I am reluctant to assume that is what this is. I can say that the pain is severe, much of the time. I do get spells where the pain is not as intense. dkd, it very well have been the nitro. It is hard to say. It has not done this to me before, but that does not mean it did not do it to me this time. Katybug, nitro will do that to me to if I do the whole tablet at once. If I am supine, and take it in pieces it does not hit me that hard. There is very little change in blood pressure which surprised me. I have even seen my BP go up. The only sweating abnormality that I have is reduced sweating. This chest pain is giving me a lot of grief. My sleep schedule has reversed. This stuff will not let me sleep. Thank you all for the input.

I do not have a lot of experience with fainting, though I have. I am just not a fainter. Anyways, I have been catching the devil with evening and morning chest pain. Not discomfort, or moderate pain. This is pain high on the pain scale. Centered directly over my heart. It has been thought that I am getting coronary vasospasms. I get them as I relax to sleep, but then I cannot get to sleep. Obviously. Then I get them if I wake abruptly. Particularly, if I wake up too soon. I am in a bad flare of symptoms, but I am not sure that this is getting progressively worse. This morning it was bad. I am on a low dose CCB. I took some nitro. I have to take it little by little. It subsided some, and I laid back down from a sitting position. When I did, I felt an intense fluttering in my chest and suddenly began to sweat rather profusely. Not as if I had run a marathon, but for me, a lot. I sat up, a bit startled. It felt as if it required some holding on to retain conciseness. I am trying to decide if this was an arrhythmia of sorts, or pre syncope. I have never sweated like this before. However, I do not have a lot of experience with fainting. I want to note that afterwards, I walked around, and had no problems with maintaining blood pressure. I am not looking for medical advice. I am looing for any like experiences or insights from practical experience.

I am sorry that you have this on your mind.

My experience with benzos, is that I started having allergic reactions to it. I had been taking low doses for a few months(?). I had to stop abruptly. I did not realize how tough that would be after only taking them a short time. That was no fun. There are others that can help with anxiety. There are quite a few that can help with anxiety/sympathetic over activity. Unfortunately many have an effect on blood pressure. Some beta blockers are supposed to be helpful. Clonidine helped me for a time with very low doses. I just started experimenting with Trazodone for other reasons, but it can help with anxiety. Benzos helped me the most. If I had not started reacting to them, I would of continued for better or worse.

I have considered an SSRI. Benzos could be helpful, though I am not a fan of their regular use. What kind of anxiety is this? Chronic? All of the time? In certain situations?

Dyspatient, welcome. I would say that if you are not comfortable with your autonomic work up, then you should find a neurologist that specializes in autonomic dysfunction. Are you familiar with the Mayo panel concerning neurological auto immunity? I do not know what all your work ups include, or not. I can relate with your frustrations. I like your picture to.

I have been sick once since I have had POTS. My resting HR rose to an average of 100. A little higher or lower. The standing HR rose to.

I think that some of us would need more sleep than the average person. I would not worry about that, but I also feel that we should get what exercise that we can. We certainly need to be as active as we can be.

Interesting.

Thank you Rachel.

11 more days for the next step. I hope that it goes fast for you. This illness is giving me a lesson in patience. Something I was short on before. Your lab results are interesting, and I hope they lead to answers, and solutions.