Racer Posted February 22, 2013 Report Share Posted February 22, 2013 The short story... I was diagnosed with numerious nurological issues as a child, and as a adult I gradually started to develope symptoms of dizzyness, near syncope, constant headaches, etc. I largly ignored warning signs and symptoms all those years, and when I did see a doctor, I was told that it all was nothing to worry about. I am really fit, and was exercising 4+ days a week up until about a year ago when my symptoms took a sharp turn, and I ended up in and out of the hospital for a couple weeks. The hospital had found that I had some serious issues that needed looked at by a cardiologist. So I had went to the cardiologist, and he said everything was fine, just common syncope, that I needed to increase my salt and fluid intake. Fast forward a year, and despite the salt and fluid increase, and continued exercise, my symptoms have gradually got worse!So, the cardiologist recommended that I have a tilt table test done. The tilt table test was by far one of the worst experiences of my life! I fully blacked out, and my systolic bp fell from a baseline of 120 to below 60. My heart rate went from 60 to 130 before it fell with my bp. The nurse/tech who did the test seemed concerned with the results. After the test, I felt extremely sick the rest of the day, and had a bad headache for two days solid. I was sort of shocked by the whole experience, I guess because I was really still in denial that anything was wrong. Coming to the realization about everything has made me really depressed.I am currently waiting for the cardiologist appiontment to discuss the results. While the cardiologist might be able to help with blood pressure/heart side of things, I am not so confident I will be able to get a proper diagnoses, because I have a long complicated history invovling multiple disablities. It seems that no doctor is willing to look threw or consider the 80 pages of medical records or my past medical history!It has been really hard recently, because I feel like I am having trouble with everyday basic functioning, and have had to cut back on exercise and the many activities I enjoy.I guess I am just looking for any advice, or people who can relate, or someone to tell me I am not just crazy Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted February 22, 2013 Report Share Posted February 22, 2013 You're definitely not crazy. I think a lot of us are going through issues like this so many here will be able to relate with you. There's a few people I know of here who are active and also have had neurological issues since childhood. If you don't like the path you end up going down with your cardiologist, find a new one. My first was horrible and a many of us here have been through multiple doctors. I also learned (at least in my case) that unless you have a "POTS" doctor, you'll want to do a lot of the research yourself and have a game plan for what you want to accomplish. The most important thing to my mind is knowing exactly what the problem is (and isn't) so you know what you're up against. Let us know how your follow up goes! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 22, 2013 Report Share Posted February 22, 2013 Dropping BP like that occurs in neurally mediated hypotension or syncope. Some patients with this condition do well on Midodrine and the new medication LDOPS Quote Link to comment Share on other sites More sharing options...
AussieOI Posted February 22, 2013 Report Share Posted February 22, 2013 Hi Racer,You are not crazy! I sympathise, and I think many people in the forum have been through times of frustration and wondering when things will improve. I have NMH so when I stand my bp drops and heart rate increases. Where are you located? There is a list of doctors on the website who specialise in POTS/NMH. I am shortly going to start on midodrine and I am hoping that will help.It's great that you found the forum as I am new to it as well. It's so helpful knowing there are people going through a similiar thing.Aussie. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 22, 2013 Report Share Posted February 22, 2013 You are not crazy. I am going through the same thing with my son and its very frustrating. He has many symptoms and most of the doctors we have seen so far just say its in your head or he is too young to be having all those symptoms. So when you are not satisfied with a doctor, you go to someone else hoping they will take an interest in your case. If you live in a state that has POTS doctors you are fortunate. Take advantage of it. Keep your chin up and make the best of it. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted February 22, 2013 Report Share Posted February 22, 2013 Racer, Welcome to the forum. So glad you found us. I am pretty new here also, but have been so encouraged and helped by all the info here. Just realizing you are not alone is a tremendous help. I hope you find a good a good Dr.soon. This is a real problem for most if us, But don't give up. Look into Mayo, or someplace similar if needed. Also, have you tried compression stockings? And when was the last time you saw a neurologist? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 22, 2013 Report Share Posted February 22, 2013 Racer, welcome to the forum. sorry you had to find us under these circumstances, but know one thing, you are not crazy. Given the results of your tilt table test (similar to my first one) I'd say that your best bet would be a dysautonomia specialist (see dinet's main page, there is a list of physicians - maybe there is one in your area). Also, any dr may be actually able to help as long as they have an open mind and the willingness to learn and help you. There are a couple of things you can do for yourself that are again listed on dinet's main page - you might want to spend some time browsing through the resources or even reading older forum entries - this will help you further realize that you re not alone in this, and that people can and do get better with proper treatment and/or life style adjustments. Good luck with your cardiologist appointment and let us know how things go. Best, Alex Quote Link to comment Share on other sites More sharing options...
Racer Posted February 23, 2013 Author Report Share Posted February 23, 2013 Thanks everyone for the replies! Where are you located? Pennsylvania Also, have you tried compression stockings? And when was the last time you saw a neurologist? I have tried a few types of compression leg/socks that athletes use for recovery. They really didnt help with symptoms other then soreness from exercise. The last time I was seen by a neurologist I was a little kid! Basically at the age of 6 (when I entered the school system), I was diagnosed with memory problems, speech/language disorder, and learning disabilities. I was then seen again when I developed doubled vision. The records from then are long lost, so I am not even sure of any specific dx from then. I really should see a neurologist, but I need a general physician to refer me, since they wont see me without a referal. My current medical records only go back a couple years, so the problem I had was that my physician was unwilling to refer me to the neuologist because he didnt see any reason why I should even see one. Maybe I am over thinking things, but I think it makes sense for a doctor to consider that I have had issues since early childhood, and that I didnt just develope problems as a adult. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 23, 2013 Report Share Posted February 23, 2013 It's worth asking your cardiologist for a neuro referral - I got to see a neuro thanks to my internal medicine specialist Definitely worth mentioning all your childhood problems to your drs and let them decide what is relevant and what not. The headaches as well as the dizziness you're complaining about should be reason enough to get the referral you need. Just don't give up! Alex Quote Link to comment Share on other sites More sharing options...
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