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Possible PoTs? Please help...

Posted , 4 users are following.

alex1996
alex1996

Hi all.

I am coming to this discussion group hoping for some clarity. I am a 22 year old female who has had her life turned upside down for almost 2 years. I’ve spent every day since my first attack sobbing and begging for answers and for someone to believe me. 

Here is my story.

December of 2016 I woke up believing I was having a heart attack. My heart rate spiked and I couldn’t breathe right. I started throwing up and got extremely dizzy. I went to the ER and they concluded it was anxiety.

Many episodes later, I have been into the ER seven times, seen a neurologist, cardiologist, and my GP numerous times.

The amount of tests I have had done is insane. I’ve tried wholistic medicine, had a spinal tap, tilt table test, multiple heart monitors, head MRI and CT, countless blood tests, and an ecocrdiogram of my heart. 

They didn’t find anything.

Basically every doctor has yelled at me saying it is anxiety and to accept it. But how to do accept an answer that you honestly feel is wrong? I know my body, and I know that this isn’t anxiety...

Here is a list of my symptoms:

1. Fast heart rate suddenly (but not always when I am standing, sometimes sitting) 

2. GI problems 

3. Nausea 

4. Diharrea 

5. Lightheaded 

6. Dizzy 

7. Brain fog 

8. Headache/head pressure 

9. Joint/muscle pain 

10. Extreme fatigue (especially when my heart rate goes very low...I will explain that in a second) 

11. Random bruises 

 

And the list goes on.

It all started with a fast heart rate that woke me in the middle of the night, and those were the episodes that happened for a long time. However, recently it isn’t a fast heart rate, but rather a slow one. Even when I’m awake it drops to like 48...

The lowest it has dropped to was 44 when I was sleeping. I went to see my cardiologist who didn’t seem concerned at all, but another doctor was. This is when I first heard about the condition know was PoTs. When reading into it, I was SO SUPRISED with how similar not only my symptoms were but the stories I have read about those who have it. The only thing that doesn’t line up is my now slow heart rate. However, I have read a couple of places that this can happen with PoTs, but I am not sure if it is true.

This is the interesting part though. I read that a lot of women notice that their symptoms worsen on their period. And I noticed that every time I have been to the ER, I was on my period. 

I talked to a doctor about my pervious tilt table to double check to see if there was anything noted, and there was but it was very small. 

Now I am wondering if this could be the answer I have been searching for. The light in all the darkness. I am wondering if anyone has had something similar, or has any input! The only thing that doesn’t make sense is my low heart rate now rather than high which causes me to be extremely tired and disconnected. My legs and feet feel so heavy all of the time and all I want to do is lay in bed because I feel like my heart can’t take it anymore. 

I am begging for an answer, some hope, and soon a diagnosis so I can stop living in fear of dying at the age of 22. I have tried to be as positive and hopeful but when going through something this awful with no help or answers, how do you have hope...

My life changed in a matter of a single night and has taken away some of the best things from me. I’ve lost some friends, family, part of my schooling, work, and hope. 

Can someone enlighten me on this? 

0 likes, 13 replies

13 Replies

  • alex1996
    alex1996

    Posted

    I also get chest pain and sharpness often along with mood swings 
  • alex1996
    alex1996

    Posted

    Also sensitivity to light and getting hot all of the sudden 
  • alex1996
    alex1996

    Posted

    And another note, my blood pressure does drop randomly sometimes very low..
  • Innersmile
    Innersmile alex1996

    Posted

    I just want to firstly say I'm so sorry you are having to go through this & not being listened to by the medical community.

    I have autonomic dysfunction aka dysautonomia and it sounds very similar. It also does sound similar to pots.

    Have you had a sleep study or an EEG? The reason I ask is because for 2 years I've not had answers and just recently had a sleep study. I was very surprised to find out that I was having seizure activity during sleep. I had no idea! After I found this out it made sense comparing it to all the strange episodes I'd had that I couldn't explain.

    I'm not saying this is what you have but it's another avenue to go down. In the mean time try and treat pots at home and see if it benefits you. For example drink lots of water to keep your blood volume up, preferably with added salt (add lemon or lime to taste better) or increase salt intake in general. Use celtic or himalayan salt instead of table salt.

    There are many conditions/illnesses with similar symptoms that make getting a diagnosis very difficult. Have a look up dysautonomia, pots, ehlers Danlos hypermobility and focal partial seizures

    Is anyone else in your family ill? Or suffer similar issues?

    Don't give up the fight. I know it's hard, frustrating & scary to not have answers. If you ever need some support feel free to message me.

    • alex1996
      alex1996 Innersmile

      Posted

      Thank you for your reply! 

      No one else in my family has ever had anything like this. A lot of women do have heart issues, however. Like tachycardia and AFIB. 

      I had not had a sleep study done so maybe that is something to look into! 

      I am going to see a new cardiologist, so I am hoping that goes better! 

      But is it still possible to have PoTs, or anform of it, when your heart rate is low??

    • Innersmile
      Innersmile alex1996

      Posted

      Hopefully this new cardiologist will be able to help!

      I think pots can effect people differently. For instance typically people with pots have sudden drops in blood pressure when standing but it's not the case for everyone, some people get high blood pressure. To diagnose pots you will need a tilt table test which your cardiologist should perform.

    • alex1996
      alex1996 Innersmile

      Posted

      I have had a tilt table test! It came back normal for the most part. Like I said there was something slight on there but nothing that caused concern or a light bulb to turn on. 

      I’ve read some things on Dysautonomia and the only thing that worries me is going into like sudden cardiac arrest because of my heart...

  • KelKel01
    KelKel01 alex1996

    Posted

    I want to start by saying I feel for you. I recently was diagnosed with Pots. I’ve never been so fortunate in my life that I found a doctor within two weeks that diagnosed me. However, those were the longest 2 weeks of my life. I had never even heard of POTS, and I work in the medical field! What I have learned is that there aren’t many in the medical community that know what POTS is, or the treatment for it. I actually was not diagnosed by a cardiologist, they said I was normal with a slight rapid resting pulse. Well there’s got to be a reason for that I said! An internal medicine doctor is who diagnosed me. Start by researching your area to see if their are any POTS specialists, research places, or a hospital that has an Autonomic Dysfunction center. Vanderbilt has one, though that’s local to me and I have no idea if that’s relevant to you. Get another opinion, look for an internal medicine doctor, a new cardiologist, etc. As for your low pulse rate, are you on any medications at all currently? Some meds that you would think have nothing to do with heart will affect your rate. Now I will tell you what jolted my doctors mind into POTS. I told him “It’s like something in my brain has turned on, and WILL NOT turn off. It’s causing irrational, crippling anxiety. And I’ve had anxiety, I know this is something more!” He started me on a beta blocker, and I’ve had much improvement in just a weeks time. Some other things I can suggest that are not med related: wear compression socks, increase salt (drink Gatorade, use Himalayan salt), and increase your fluid intake. DO NOT let yourself get dehydrated. That is a big trigger for a POTS flare. With your tilt table test, in my opinion ANY abnormality at all whether it be big or small is significant. My doctor didn’t even do a tilt table, he said there wasn’t any point in putting me through that with my textbook symptoms. A test you could try, get a pulse oximeter for your finger. Lay flat in bed for 15 minutes or so. See what your pulse is then. Then abruptly stand up and see how high or low it goes. An increase of 30 BPM or more is a good indicator. Also note if you feel faint, dizzy, disoriented when standing abruptly. I’ve rambled on a bit here, but if you have any further questions I would be happy to give you my opinion, or tell you more of what my symptoms were. 
  • KelKel01
    KelKel01 alex1996

    Posted

    Also, my doctor recommended a gluten free diet for GI upset. It’s hard at my age, I’m also 22. But he swears it will help. 
    • alex1996
      alex1996 KelKel01

      Posted

      I am not on ny medications! That is the weird thing! It started off with having these spikes in heart rate, even when just sitting. Now it gets lower, especially around the time of my period. I’ve read stories of pots and a lot sounded similar expect for the constant spike in heart rate while standing. Mine could even be when I’m sitting and like I said now it’s lower. I’m just losing hope and I don’t have a bunch of money to spend on testing! I’ve already done so much and every doctor says anxiety, even though I know it isn’t. I know my body...I just can’t get anyone to listen.. 
    • KelKel01
      KelKel01 alex1996

      Posted

      I know there are some Dysautonomias that include low heart rate. I want to say it’s even possible with POTS. Especially if you had high before. I also had spikes while sitting. Could not get my heart rate to go below 100 most of the time. My first diagnosis was anxiety. I just  had the feeling that no this isn’t it, something isn’t right. After many antidepressants and anti anxiety meds, plus various tests in a two week time period I decided to find another doctor. Plus I felt like I was going even crazier because everything was coming back normal. So I finally got a diagnosis, now just playing with the meds to see what works. I’m also about broke, I haven’t been able to work through all this and don’t know when I will. I’m not even sure if I will ever be able to go back to my normal job due to constant standing. It is SO frustrating.  Just don’t give up. Keep searching and pushing. 
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