Jump to content

Anamaria

Members
  • Posts

    39
  • Joined

  • Last visited

Everything posted by Anamaria

  1. Don that’s really great! I’ve been contemplating getting an Iwatch but I have fear that it’ll make me more anxious. I have a pulse ox and a blood pressure cuff too but I feel the iwatch will just have me ALWAYS checking, ya know?
  2. If it makes you feel any better I had a holter on during an episode my heart rate went to 43 then shot up to 160 my rthymn was ok though. My cardio EP told me this wasn’t dangerous at all. I have an appt with EP tomorrow and I’ll mention that it happened two days in a row. I get exactly what you described....I hate the feeling because it leaves me feeling anxious for hours afterwards because I think something bad is going to happen. Please keep us updated with what they find if they find anything pacemaker has been thrown around for me as well but I’m trying my best to avoid it.
  3. Oddly enough, my symptoms actually kind of leveled out for a few weeks. I was naive enough to think it was controlled or just disappeared all together. So these two episodes were even scarier because they literally came out of no where!
  4. I’m so sorry! The feeling itself is so scary and I literally have to talk myself out of rushing to the ER. I have had an extensive Cardio work up and they told me my heart was fine. The PA that I see at my EPs office is incredible and she recommended that I see a genetist because she feels like I have secondary POTS. I saw a genetist a few weeks ago and I’m going through the genetict testing process now. Hopefully they can figure this out soon. I’ll keep you updated if they find the cause of my heart doing that and if you find anything out on your end please let me know.
  5. First I’d like to point out that we have the same diagnosis! You’ve had your diagnosis longer than mine so I’d love to get to know some of your symptoms to see if any are similar and what you have found to help. I have eye issues as well and recently started seeing a neuro opthamologist. Have you seen one?
  6. I guess I forgot to mention that I use a pulse ox I didn’t check my blood pressure though a few months ago I felt something similar and I had my pulse ox with me it logged my HR at 43 but then it literally within seconds went up to 160 it recorded it on the holster monitor I was wearing at the time. It’s super scary in the moment and considering that I’m 32yo it’s even scarier! Hopefully my EP will have some insight on Monday. Thanks for answering!
  7. Yesterday at work I got an episode where I felt like I couldn’t catch my breath I literally felt my heart slowing down and then it went super high. I called 911 because I was so freaked out, I literally felt like I was going to die. The nice EMT did an EKG and told me it looked normal so I opted out of going to the ER (I feel like I live there and they always tell me to follow up with me EP). The same type of thing happened today when I was laying in bed propped up watching a movie I can feel it coming on I feel really weird and then I feel my heart slow down drastically and then go super high. Anyone have this with POTS? Is this a common symptom? I have an appt with the EP on Monday so I’m trying to avoid the ER and just wait it out until then.
  8. Recently I’ve been offered to have an EP study done along with a sinus node ablation if they can find the issue during the EP study. I have POTS but I also have inappropriate Sinus Tachycardia and Bradycardia as well. Has anyone else been given this option? Did it work for you if you went through with having the procedure done? Any side effects?
  9. I feel as though at this point I’m developing anxiety. I’m currently taking Propanolol for my high heart rates but I still have a few episodes of it getting into the 120s. The doctors seem to think that something else might be causing my POTS so my mind is always thinking of what it could be. My blood pressure fluctuates a lot from being a little high, to normal, to too low. I’ve learned this is a very difficult syndrome to manage.
  10. I will keep you in my thoughts and pray that you’re able to be sooner. I know the wait can be difficult. I’ll definitely write next week when I get the results.
  11. Steven, thank you fo much for your detailed reply! I’m hoping the bradycardia is just another annoying POTS symptom. I was most concerned about that because it happened while I was driving and not “resting.” I just had autonomic testing last week at Vanderbilt University. I should get my results some time next week. Their program is by referral only but if you aren’t set up with physicians that know a lot about Dysautonomia I would ask your current physician to refer you there. Please keep me updated on what your holster says and other testing, I realize that POTS is unique to each individual but just being educated about it gives me tremendous peace of mind.
  12. I have recently been diagnosed with POTS after failing a tilt table test and being seen by multiple physiscans. What keeps bothering me about the diagnosis is I had a more recent episode where I felt as though I was going to pass out while driving I pulled over and attached a pulse Oximeter to my finger and it read 48 then it shot up to 170. This was noticed on my event monitor reading as well. I was under the impression that with POTS syndrome you typically have an elevated heart rate (which I do most of the time). I’ve asked my physcians about the episode I had and no one can explain why it happened. They have since prescribed me medications to lower my heart rate but I haven’t started them because I am scared that it will mke my heart rate too low in the event that I had another Brady episode.... this morning I woke up feeling pressure in my chest I was still lying flat when I took my heart rate it was in the 100s. I’m so concerned about my heart rate that I feel it’s causing me anxiety. My blood pressure also fluctuates from being either slightly high, relatively normal, or even on the lower side. Is all of this things that I will have to learn to manage with this syndrome? Thanks so much for reading my post and hopefully you can provide me with a more detailed understanding of something that is so complex. Has anyone else had Bradycardia not while lying down and suffer from POTS? Is this all normal? I’m so confused and frustrated at this point.
  13. Good afternoon! I’m brand new to this site and I have recently been diagnosed with POTS, Joint hyermobility, and Ehlers Danlos. I am a 31yo mom of three and I work full time. I was wondering how to post a post asking a few questions? Can anyone point me in the right direction?
×
×
  • Create New...