Dysautonomia (Autonomic Dysfunction) Community
Was diagnosed 6 years ago with pots and have some concerns
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Was diagnosed 6 years ago with pots and have some concerns

Hey everyone i am all new to this site and just wanted to introduce myself and ask all you guys for your opinion. My name is Sean i am 24 from Nj i was diagnosed about 6 years ago with POTs. My question to you guys is i was told by a few doctors they feel i might have some level of anxiety going on at times. 7 weeks ago i woke up and had dizziness / lightheadedness and some minimal head pressure. I figured it was due to the heat in my house or possibly getting sick so i didn't make a issue out of it. The symptoms are still going on but i now have a feeling like my body is shutting down where i feel like I'm running at a very slow speed. My arms and legs legs sometimes feel a little shaky inside and get like jello along with a empty feeling in my chest. Since the empty chest feeling has start i notice i don't feel my heart rate at all even when i put my hand over my chest. If i am doing like 90 plus beats a minute i can start to feel it but i can always feel it in my neck without issue. My blood pressure has also been normal during the day and evenings when it starts getting late at night around 430am my blood pressure sometimes drops to 86/ 65. I have been back to my cardiologist about this issue and he took me off my beta blocker figuring i didn't need it anymore due to my blood pressure has been normal along with my heart rate. He did some test to make sure everything was fine such as 24 hour holter which came back normal no issues a chest x-ray that was normal ct scan of brain that was normal a long with a blood work up that was normal. I also had a full echocardiogram and stress test 6 months ago that was normal no issues. He told me give it a week or so after being off the medication to see if the issue was still here and it is. He referred me to a neurologist which i say and sent me for a MRI of my brain and cervical spine to check for multiple sclerosis, chiari malformation and some type of myopathy i haven't received the results back yet. I was just wondering knowing all the test i had done and knowing they all came back normal if this could be anxiety or some sort of stress. I don't get that nervous or overwhelming feeling typical with anxiety nor does my heart rate or blood pressure go up. Its almost like a constant feeling of slowness in my body and sometimes my head will let up. I do think about it more since i went to the neurologist thinking this might be ms like he is testing for or maybe like md or something along those lines but i don't have a family history of that. Please leave me some advice and information on what you think could be causing this issue.
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3060676_tn?1371241540
I cannot give you an answer on what causes it, but I have POTS, dysautonomia and Chiari.  

First, if you are feeling crummy and getting worries about your health, it wouldn't be far fetched you will have some sort of anxiety, but I do not necessarily think that the anxiety is a trigger. (Which came first-chicken or egg). Probably weird/scary symptoms then anxiety. But that won't solve the problem.

Secondly, it is very common for the 24 halter, echo, stress tests to come back normal because that is not where the problem lies. I had a loop recorder heart monitor implanted. It was the size of a small jump drive. And my episodes were in the am and in a hot environment like a shower, and straining like climbing stairs or lifting my arms above my head.

Try this: get a wrist blood pressure monitor and take it laying down. Then stand up and take it again. Record all your results. (Have someone with you in case you pass out). These are the things your doctor should be doing in his office so he can see the difference in readings. Also try taking it during times you feel bad and what you were doing to identify triggers.

You need a cardiologist that is versed in POTS. Florinef worked well for to to raise my blood pressure.

If you need tips to help you feel better, let me know. I don't know how much information you are searching for.

Best of luck!
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2078882_tn?1333489661
Hi Sean, sorry about your diagnosis. Welcome to the medhelp group though! you can find lots of support and wonderful help on here!!
I have similar issues with feeling like I cannot feel my heartbeat... my bp gets very low and that seems to be when I have my intense issues. I wear support stockings(http://www.amazon.com/Relief-15-20-Closed-Support-Silicone/dp/B0012XRFKW/ref=sr_1_15?ie=UTF8&qid=1391789338&sr=8-15&keywords=15-20mmhg+compression+socks ) to keep my bp up. I have been wearing them for 4 years now. they help immensely! I also drink a lot of water, and a Gatorade every morning. When I was diagnosed 5 years ago a day of walking 10,000 steps would put me in bed for three days and I would have awful symptoms. I have been working on increasing my steps and now I am up to 15,000 :) with no symptoms. I cant completely get rid of the compression stockings yet but I can go without them for a day at a time... There are cheaper places to buy them too... I used a total gym to start exercising as much as possible without having to stand, because I couldn't at first. I also cut out gluten in my diet for the past year and a half and that seems to help tremendously. My fitness level is nowhere near what it was when I was younger but I am getting healthier and more active one day at a time... let me know if you want to find anything specific!
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