Ok I went to The Doc

[ChadK]

The doc knew about POTS and I had my BP taken standing up and laying down and sitting and in all cases it was perfect even on the tilt tabel test thing it was good and he concluded I did not have POTS but yet all my symtoms are just like it . Now yes , the past 2 days my heart has not raced near as much and I have been able to get up and walk around and etc and have been gettiing better day by day. The only problems I am having now is that it feals like all the blood is rushing to my head and I have a minor headache. He said that all these symtoms are related to anxiety and some previous dehydration. He did a experiment with me and told me to lay down and he took my heart rate and it was normal then I stood up and it was about 105. Then he had me lay down again and sit up but this time when I stood up he had me throw a ball back and forth in my hands and to concentrate on it while I was throwing it . The time I threw the ball and stood up my heart rate was only about 10 beats faster than normal and then went to normal but as soon as I started thinking about it again when I stood up it was fast again. He concluded that this was severe anxiety disorder pretty much making my body think I had POTS . He said there are a few types of POTS and some people can get it temporarily after a band case of anxiety or something traumatixing anf will go away when others will have it off and on throughout life. I could have swore I had it but the doc and hospital here is one of the top heart docs in america. So if any of you have input I would like to hear it. Another thing .... He said that with POTS patients they ussually have a high heart rate when standing and there blood pressure drops ( not a whole lot all the time ) but that is what causes a lot of people to faint when they have POTS.

[Jenn202]

I think you experienced what many of us have with Dr's and tests....

There was a discussion on here a while back about the accuracy of the tilt and other ANS tests as well as many others here ( including myself) that have not been "symptomatic" at the time of evaluation concluding that there was nothing wrong.

As we all know POTS and dysautonomia can go in cycles...... We are not always extremely symptomatic...

The tests such as the tilt test and even just being in a Dr's office in a controlled evaluation can not come close to mimicing the daily activity we do ...all the bending, twisting, sitting/standing...situations such as environment and weather/temp changes etc etc...... We react to all of these.... A tilt will never be able to truly document this.

Bottom line is I think you should find a new Dr. Have you checked the list of MD's on this site?

Ijust wanted to give you some encouragment not to give up .... Take Care

[ChadK]

I understand where you are coming from but the past week almost I have monitored my BP standing , sitting , laying down , when my heart was beating real fate , when it was slow , and even in the hospital and it has not one time been above or below normal.

[ChadK]

And here is one more question, I have done this for 6 years now . It seems after ever episode of anxiety I Yawn all the time to get that refreshing breath and it feals like my lungs are tired and the doc said it is probally because I am concious of yawing or has becomg a habit and I think that is right but anyone else ever had that problem where it feal like it takes you 15 times to yawn to get the o2 to hit the back of your lungs. I have heard healthy people get this sometimes from nerves but not sure

[Jenn202]

Chad - Have you been tested for Mitral Valve prolapse? Just a thought. I'm not saying you definetly have dysautonomia...... MVP can cause pounding heart.....

Also My BP and Hear rate even at its highest is still in the semi normal range.... I knoe some here get extremely high heart rates... I think the highest mine has ever went was 120.......

[ChadK]

i have had test and test over the years , and I am only 21. They have done x rays ,ECG'S and you name. I had a question, what are some dangerous arrythmias and would the doc have found it?

[JaneEyre9]

I just wanted to add that with my POTS, i get the high heart rate, but my BP stays pretty normal till right before i'm ready to pass out. I've never had a doctor capture a particularly exceptional BP reading on me. In fact, sometimes my systolic BP will climb just a bit before crashing. Diastolic BP starts to fall off at this point.

As for arrhythmias, there's no real way for your doctor to monitor those unless you have some sort of event recorder. I just had one for the past month and was able to press the record button when i was having symptoms. I was usually so out of it that i wouldn't even think to press it, but a couple times i was able.

Hope you can get some answers.

Kristen

[michiganjan]

This is in response to the comment about POTS running in cycles or being worse at some times than at other times.

I have had POTS for at least 25 years. My POTS is completely predcitible. I stand up, and that heart rate is going to climb right up there. No matter if I feel wonderful, relaxed, tired, cranky, sick, or upset--none of this makes any difference. When I stand up, that heart rate will climb right up to 160 and hang around there until I sit down. I do take bea blockers and have for a long time. The beta blockers do control the heart rate whlie standing. I once weaned off a beta blocker after taking it for 12 years. As soon as it was out of my system the POTS heart rate on standing returned to what it did before going on the beta blocker. I started a different beta blocker and have been on it about 15 years and went off it for awhile a year ago. Sure enough, my heart rate on standing reverted to its former performance.

Michigan Jan

[morgan617]

Chad, my doctor called the breathing thing sighing hyperventilation. It just feels like you can't get quite enough air and then you finally do and a couple minutes later it starts over. He told me it was anxiety, but I have noticed it is so much worse on beta blockers for me that I can't take them, and it wakes me up a lot at night. I go through cycles of it, but recently when my potassium was pretty low, it was particularly bad. It seems better now the potassium level is up, which makes me wonder about whether it's anxiety or OI related. This doesn't help you stop I know, but did want to let you know, you are not the only person that does this. morgan

[Poohbear]

I hope you are able to get the help you need soon. Can you get a second opinion and meanwhile, while you are waiting and figuring all of that out document/ keep a chart of your symptoms and corresponding heart rate and blood pressure. Don't focus too much on it....maybe check everything when you first wake up, before bed and then in between only if you are feeling bad or having symptoms. This may help you see things that may be triggering symptoms (for example..large meals and feeling bad after) and it will give the Dr's something to go on as well.

It can be a difficult issue because there are some overlaps with anxiety and the hormones that flood our bodies with anxiety but what many Dr's don't understand is that there is something not working right with your body. That's true even with people who have panic attacks vs. an ANS disorder. Bottom line is regardless of what's going on with you, you need a Dr who is working to help you ---whether it's "anxiety" or not. So, look for another Dr if you feel you aren't getting the treatment you need.

I too have some odd breathing problems. I think I have a mild case of asthma and since my body is so sensitive to things it reacts to things in the environment without my easily being able to pinpoint what's going on. I know I'm highly sensitive to mold and I always have more trouble breathing when it's humid, after rain etc. I think it's enough to make me have problems but not enough for the "typical" medical field to see it as their "typical asthma" case.

Good luck. Keep us posted