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I don’t often sleep flat on my back, mostly prop myself up so I am more half sitting, sleeping. But during my worse time last May, it was difficult to find a position that didn’t make me feel ill. I did have a time where I would feel like I couldn’t move and my throat was closing up, I couldn’t talk, tried whispering to my husband and that was difficult. I slept with a container with straw and would sip water, and throat would open up a little. But I would feel like I had to stay completley still and as if my I was choking. I wasn’t sure if it was the health problem or side effect of new meds. Very scary.
Recently I had the tilt table test, and when they put the table back down, I felt much worse. I thought my heart was going to burst. The technicians thought maybe I got a last burst of medicine, but I think it was the position, along with the heart racing, the back of my head felt full of pressure. When I sat up it was better. Maybe I will try lying flat and seeing what happens again. But I was told not to lie flat, because it makes it more difficult to get up in the morning.I do so agree. I want to stay at Dr. Diana’s house! Lol. Really to have someone understand what you are going thru and want to do testing to help! That would be so great. The physical problem is awful, but the lack of understanding, support and belief make it almost unbearable. I looked up one list for autonomic experts and for my state there was one. And the one listed works with regular pots and feels exercise is the key, so I don’t think he will help with this type. I have a huge university hospital not too far away, and they do not have an automonic clinic/dept! I am going today to my gynecologist. It was supposed to be for a check up, nature has decided that will not happen today (its always somethin lol) but I am still going to insist they run my hormones. Last time I asked I wasn’t as ill and they insisted I didn’t need them, but today I am going to be firm. I need them run, the electrophysicist suggested they run them. Maybe that will hold more with them. I do wish Dr. Diana or her clone lived near by!
Just a quick update: Saw the doc above and he suggested I go to Cleveland Clinic or some clinic in Texas, I think he said the Anderson clinic. He also said I had WAD, a Weird A** Disease! He is a riot, but said the doctors are not going to know what to do with me, I am too “weird” and need to go to Cleveland. So I will try there! On a positive note, I drove myself to appt. and did not have an episode.That is what I am going to start doing. But I am in the process of getting all of my medical records from all the different doctors and hospitals I have seen. AND that is not easy. They do not want to give them to you, I have had offices say they will fax to what doctors I want, or that I have to pay for them, I must come in for them, I don’t need them, etc. So I am slowly getting them and I am creating a binder with everything. I tried calling MAYO, but I have to fax all the records to them before they will talk to me. So, I have to wait. I am thinking of calling Cleveland Clinic, or Dr. G. in Toledo. Both of them aren’t too far away for me. Please let me know how your appointments go.
I just don’t understand why they will not just do all the tests. I mean ok, so they are pretty sure i have hyper pots. So why not check to see what could be causing it, is is a net thing, a mast cell, a volume, etc. I hear their are many reasons and depending on what it it can vary what will work.
The latest doctor told me that as long as my blood work came back without any abnormal levels, she wants me to change the cardura to cholondine. Then the next month she would like me to change beta blockers and then if that helps stabalize it she wants me to start her exercise rountine. I admit I am terrified to change medications, I don’t want to get worse, and when I am just a little late taking one, I feel awful. I know I should look at it as it may make everthing so much better, but that hasn’t really been my experience lately. So, I have to decide when to make this new change, and hope for the best. I will watch the video you suggested also. Thanks and good luck to you too.Thank for the response. I know you can understand this when I say, I so wanted it to be a pheo. It has been the worse year. If it was cancer, a tumor or something that people understand, I would know what to do and get some support from doctors and family and friends. I can’t understand how they can say this won’t kill you. In May, my blood pressure kept going up when I even lifted my head off the ground. I was in hypertensive crisis, although the hospital would tell me I was fine, because once I was lying down it would get lower. So they would discharge me, and I would have to stand up to leave and it would start all over. I am currently on carduera and metorprol. They seem to help some with the bp and heart rate, most of the times. But I am so limited on what I can do and it does seem to also be on a monthly schedule also! I live in a bungalow and cannot go in a large portion of the house because of the stairs. Sometimes as soon as I go up stairs (which I haven’t in a while) I will get the pressure in chest, the pain/throbbing in left side of face, neck, arm even side. But sometimes I will be able to do stairs and bp and heart rate aren’t too bad, but later, I know this sounds weird, but the next day I will have the beginning of days where everything sets it off. Is this possible could the stairs cause symptoms way later? It seems like it and I am totally afraid to do them. I do not pass out, or get light headed like some many of POTS patient talk about. I still worry this is angina or something they are missing. I have found a doctor who is in electrophysiology and cardiovascular medicine and she said the tilt test confirms POTs. But she seems to only be concerned with BP and heart rate. Thinks I need to see someone else for other sympotoms. Do you have any suggestions as to who to see. I have seen a endorcrinologoist, neurologist, primary, cardio (several!), very disappionted with gastrologist. Where can I go to discuss POTS as a whole. I know I am better than I was back in May, thanks to the one cardio. who thought it was a possible pheo. BUT I am not well, I am afraid to the present and future. So whiny but I was in the BEST shape prior to this and did everything to and for my daughter, and now I can barely do anything with her. Plus, people think I am faking this! I don’t think my husband even believes a lot of this. Sorry but any suggestions would be so helpful. I live in MI and I tried the big university hospital, the hypertension expert there did no testing, said you have a mild case of pots and I don’t need to see you unless needed. When I asked what I was suppose to do, exercise, fruits and vegetables, and take bp meds. Thats it!
