Kat Posted June 11, 2012 Report Share Posted June 11, 2012 Hi,This is my first post and I am thinking that this may be a forum that will be helpful to me. I have been sick for over 6 years now. I have been to over 10 neurologist and finally got a diagnosis of Orthostatic Myoclonus. Basically, if I stand very long my legs get very shaky and I have to lay down. As time has gone on the tremor has spread. Now I have problems being upright, period. If I am upright very long, even sitting, I get a heavy head, dizzy, clumsy, tremulous and my eyesight gets blurry. When I am laying down, life is good. Sometimes I feel like I will pass out. My neuro sent me to the cardiologist. The cardiologist says that when I stand my heart rate increases by at least 30 beats and I have high blood pressure. He mentioned that this could be a problem with the autonomic nervous system. He suggested a beta blocker but wanted me to have a couple of tests done and to follow up with my neuro. I have done the tests, spoke with my neuro about what exactly is an autonomic problem. I can't say he had much to tell me. Through some research I came across this page.I am confused. Can you have an autonomic condition with you BP rising upon standing instead of falling? Can your heart rate rise instead of fall? Do these symptoms sound familiar to anyone? I am wondering if the tremor could all be part of this problem as I was in good health before all this craziness began.I don't know if any of this makes sense. I would love to hear any ones thoughts.Kat Quote Link to comment Share on other sites More sharing options...
Chaos Posted June 11, 2012 Report Share Posted June 11, 2012 Hi! Welcome! You found a good place to check in.Yes, there are definitely people on here with dysautonomia who have their BP rise when they stand. Most of us with POTS have the 30 BPM increase when we stand. There are some docs who call the version of POTS where you have the HR increase, along with a BP increase, HYPERADRENERGIC POTS. Traditionally POTS has been defined as having no significant change in BP along with the increase in HR. Hyper-POTS then is the version where the BP increases along with the HR increasing. If you do a search on this forum and check out the info on the DINET web site it will explain more about the different "flavors" of POTS. However, since this is all relatively new, there really isn't a consistent nomenclature that defines the different sub-types that is agreed upon by all the various specialists. Your average Neuro is probably not going to know much about this. Personally I had no luck with anyone locally as far as neurologists who were even willing to learn along with me so I had to go to a couple of the "big" places (like Mayo and Cleveland Clinic) to get a diagnosis and proper treatment. If you try other neuros in your area, you might want to call them first and ask if they have any experience working with this type of diagnosis so you save yourself time, money and heartache.Good luck in your search for answers! Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 11, 2012 Report Share Posted June 11, 2012 My son's bp and hr both increase and he has tremors in both hands(worse when idle). He has POTS with many numerous other symptoms(especially nausea). So what you describe, bp rising and tremors, can be an autonomic issue. I think seeing a specialist who deals with autonomic issues would be the way to go. We continue to take my son to a neurologist who specializes in autonomic issues and a hematologist who specializes in mast cell issues since that is also an issue.Christy Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 11, 2012 Report Share Posted June 11, 2012 Kat:I agree with the other responses. You should find a doctor who specializes in autonomic issues. It may require some research (and some traveling) but it is well worth it. Most of the doctors that my daughter saw before we went to a specialist had no idea what POTS was. Quote Link to comment Share on other sites More sharing options...
Kat Posted June 11, 2012 Author Report Share Posted June 11, 2012 Thank you for your responses. I was so confused because it seems everything I had seen referred to a BP drop when standing and I knew I was the opposite. I have traveled to different neurologist that specialize in movement disorders because I thought that was all it was. (not that that was not enough) They all said there was more going on then just the orthostatic myoclonus/tremor. I did go to Mayo but the concentration was on the tremor. I keep seeing things that I am experiencing on this forum. I am spending the majority of my time laying down. I am really thinking this may be my core problem. I am wondering if it is smart to go ahead and try the beta blocker in the meantime while I am looking for a specialist or just to hold out? The medications I have tried have not been helpful.Again thank you. After all these years, this may really be it. Quote Link to comment Share on other sites More sharing options...
corina Posted June 12, 2012 Report Share Posted June 12, 2012 Hi Kat, welcome to the forum! We can't really advize you on whether you should start a med or not. That's something you need to discuss with your doctor(s). I think though that a new specialist would like to do his/her own tests which means that you need to come off your meds to get accurate results. Sorry you're having such a difficult time, I hope you'll find a good specialist soon! Quote Link to comment Share on other sites More sharing options...
Kat Posted June 12, 2012 Author Report Share Posted June 12, 2012 Thanks. I kinda wondered if going on a medication like that would effect results of testing a new doctor would want to do. I think I will hold off until I see someone new. I will start my search! Quote Link to comment Share on other sites More sharing options...
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