POTS OR ANXIETY?

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Basically I have convinced myself that I have Postural Orthostatic Tachycardia Syndrome. It feels like my heart is racing upon standing or when I do minimal exertion. I know that I have anxiety & also panic attacks. But why does my heart rate jump from sitting to standing. It can go from 67 to 110. I've had multiple test done & even had a tilt table test where I blacked out or at least it felt like I did. But my cardiologist said that it wasn't POTS or OI, but it was vasovagal syncope. I have never passed out before in my life so that was a SCARY feeling (I had these sane symptoms before the test so I don't think that caused it) he said that my heart rate slowed down too quickly and I fainted but I came right back. I'm scared to stand up now, especially for a long time. Thank God I have a desk job, but I'm also a makeup artist but when I have clients I sit down & do their makeup. I'm scared to exercise, or take long walks, I don't even go out. I'm scared I'm going to stand up & faint even though my cardiologist said if it's never happened before it most likely won't unless I'm tilted again. Can this be POTS? Or can your mind really trick you into thinking you actually have an illness. PLEASE SOMEONE HELP ME!

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  • Posted

    I am sorry you are having such problems. Don't give up but rather seek a second opinion if you can. We know our body and mind better than anyone else and we need to take control of our own health. I hope you find answers.

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  • Posted

    Hi there

    I've just been diagnosed with POTS myself literally just started my medication today. I feel your pain I've been suffering for a long time with lots of symptoms and doctors were useless always made me feel like I was going mad.

    Anyway a couple of things not sure if you are in the uk but the potsuk website is brilliant it lists out doctors all over the country that specialise in POTS and you could ask your GP to refer you to one of them hopefully they will as I had trouble with my GP if not you could maybe see them privately that's what I had to do.

    Do you also have low blood pressure? and do you get dizzy when you change position? Do you have gut problems and joint issues? My heart races when I change position whether I sit up stand up and my head spins I get so dizzy that I need help sometimes to walk outside I can't work at the moment it's so bad and been having difficult time with my work I'm on probation and they aren't happy with me. I also faint a lot too especially when I'm hot or on my menstrual period.

    I really understand your frustration and hope you get better soon please keep fighting until someone listens that's what I had to do. Any questions please just ask 😊 Sending you best wishes x

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    • Posted

      Hello! Thank youso much for your reply! smile

      I do not have low blood pressure. My blood pressure never gets lower than 105/55 and that's when lying down at bedtime. I have never been dizzy or fainted (besides the tilt table test) but I have a few questions.

      1. Does your heart race EVERY time you stand up? Mines does not but for the most part it does, especially when I'm thinking about it.

      2. Does it race and then start to slow down? Or does it jump up and stay there until you sit down or stand up. Like does the rapid heart rate have to be sustained?

      3. Do you feel an adrenaline rush everytime you stand up?

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    • Posted

      No problem 😄 It's nice to get replies and talk to other people about their experiences. Oh ok cool no problem my blood pressure is always very low around 80/56 and when the doctor did the test on me he said that my heart rate went up a lot when I went from lying to standing.

      In answer to your questions:

      1) I'd say nearly all the time my heart races fast when I change position

      2) it goes very fast I can feel it but doesn't stay fast constantly it does calm down not necessarily by sitting down just like naturally. I have to like stop still when I stand up to get my balance before I start moving as my head spins and I go all wobbly.

      3) sorry not sure what you mean by adrenaline rush but when I change from lying to sitting or standing my head like spins feels like my eyes are rolling in my head sometimes my vision goes all white my heart pounds in my chest sometimes my feet go funny colour.

      Also like when I'm in bed if I move my head or turn around I go dizzy too it seems to be for me any change of position triggers it.

      I hope that helps sorry I'm not great at explaining it lol if you have any more questions please just let me know x

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    • Posted

      Hi Laura, I can relate to your delima. I have numerous symptoms and many the same as you. My symptoms contiinue to change and get worse, I am affraid to be alone and do any kind of activity. I have been treated for HBP for many yrs and recently my BP has been a bit high even with medication but HT normal.just walking 150' or standing and walking to the kitchen my BP drops and my HT rises. I have vertigo, migraines, blurred vision, tremors, sweating, severe joint and muscle pain and come to the verge of blackout. So far my BP medication has been adjusted as well as colesteral mdication and a pacemaker implanted but symptoms are still becoming worse and moree frequent. I pray you will find help, I am still waitinf for Tilt Table Test after 3 years of requesting it.

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    • Posted

      I am so sorry you are going through this. I was told for over ten years I had POTS and my cardiologist just changed it to Innapropriate Sinus Tachycardia. I think she really doesn't even know what's wrong with me. I feel like I am annoying when I complain about how horrible I feel. I just want to feel better.

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    • Posted

      We know our bodies better than any doctor. They track symptoms when we visit them but we live with them 24/7. I am so sorry you are stuck in this cycle of confusion. Can you see a new Cardiologist? When I had civilian doctor I got spoiled, now that I am trapped in the VA system it is a nightmare.

      Praying for better care for you.

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    • Posted

      Thank you for the response. I just need to talk to people who have the same symptoms as me. I tried to find a group on Facebook and couldn't. Like a support group. I was in the hospital last night because my heart was beating so fast. I was give metroplol through an IV and I was told I have to learn to live with this. How does someone do that?

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    • Posted

      Kenaz his did the tilt table test go? I am doing that test again too. How do you get from day to day? Aslo have you had your Vitamin D checked? Mine was really low and it is supposed to help with overall health. It is not common for doctors to check it. I hope today is a good day for you!
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    • Posted

      Thanks you so much for the well wishes. I have the test on 10-07 and hope it gives some direction to the doctors. My BP is now running high with chest pain and pressure. I spent Tues in the ER but they don't want to up my BP medication till after the test. I take Nitro and Aspirin and then I usually need to take Valium to calm down again. It is hard to get to church and my wife does the shoping. It is impossible to do any kind of physical activity, even walking drives HRT RT throughh the roof. I can't believe the doctor told you that you had to live with your conditions, we are dancing in stroke territory. Valium/Diasapam helps calm down but we can't live our lives in a cloud. I started having nose bleeds and n 2008 I had brain surgery for Hemangioma/ brain bleeds. We had never heard of POTS or Autonomic Nervous dysfunction till 3 1//2 years ago when Mayo Clinic in AZ was treating my Migraines. VA is still uneducaated on it and that is why it is so hard to get any help.

      I wish you well my friend, I love your handle because Life truly is a blessing. I am seeing that more every day.

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    • Posted

      It is really bad if you can't even go to church. Last Sunday I had to walk out during the second song because I just couldn't stand anymore. Went to my car to take my metatroplol and medicine I take to calm me down. It was horrible. I just waited for the service to end so I could go to the daycare to grab my kids. I am sorry you are going through so many health problems! But it helps me. I don't know anyone who is going through a lot of the same health issues as me. I pray you get better!

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    • Posted

      I am so sorry to hear of your pain and anxiety. My heart rate goes nuts and I have to take Nitro for chest pain then Valium/Diasapam to calm me down again. Please don't hesitate to contact me, I have found so much help through our COPD forum. It is comfoorting to talk to someone that understands.

      Blessings to you, Ken

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    • Posted

      Thank you so much! You are very sweet. I am going to see a cardiologist specialist in Seattle. I really feel like my cardiogist is just guessing. I am a mother and wife. I value my life and want to be here for my family. Thank you for talking to me. God bless you smile

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    • Posted

      We know our body better than any doctor. A second opinion is always a good idea and in civilian life I got spoiled. With the VA we have to fight and wait for everything we need. I pray your doctor can give you answers and get your life back on track

      Blessings to you and your family, Ken

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    • Posted

      Like we are fighting to stay alive and be healthy at the same time. I wanted to see if you had your Vitamin D checked. Apparently if you are low on Vitamin D and Magnesium it can cause a ton of horrible symptoms. I haven't felt any better yet with taking 50,000 once a week of Vitamin D3 but I read that it takes months to feel better. Just thought I would share. My levels were 14 and I am not sure what they are now. There are a ton of low Vitamin D articles you can look up and read.

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    • Posted

      Thanks for the tip on Vitimun D. I have been taking 4,000 units a day for yrs, they check it every 6 months and it is OK. My PC sent me by ambulance to a civilian ER last Tue and they had a civilian Cardiac consultant come and check on me. The first thing the doctor ask after looking at my symptoms, "have you ever heard of POTS?" Since I have the test tomorrow they didn't want to do anything about my BP so it doesn't drop to low. We shall see what the test shows. I hope you get answers so you can get back to what you like.

      Blessings, Ken

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