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About Jessica_

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  1. 🙌🏻 I am right there with you! You are completely right that tachycardia is just ONE of the symptoms, and honestly not my worst one! I’m sorry to hear it took you 2 whole years of misery before you finally got the help you desperately needed. This is a complicated illness but we shouldn’t get punished for that. I still have a bad taste in my mouth from that neurologist. Who in my mind was going to be the one doctor that would understand what I am going thru and instead she treated me as if I didn’t matter. Because I didn’t meet her criteria. She wouldn’t even speak to me. She just did the TTT and then told her assistant to send me back to my EP. It was devastating. Since battling this illness I have lost my faith in our medical system. Granted, there are great doctors out there who will treat you like a human being and have compassion. But there seems to be more insensitive doctors who are after money and don’t have time to DO THEIR JOB and get to the bottom of things. Seems they have forgotten who they work for. Sure I might be steering off topic here but I’m frustrated and venting too! Lol thank god we have this forum, we are not alone!
  2. Great question! The first neurologist I saw who is the “pots specialist” in my area said I don’t meet the requirements for Pots because my heart relsolved itself on minute 7 or something like that. Even tho I went from 80 to 156. However every other doctor I have seen and my current neurologist says I have pots so I guess it’s a matter of opinion.
  3. Jessica_

    Adrenaline Rush

    I had this too! When my Pots first started I used to get this “surge” within 1-3 hours after falling asleep at night. My body would feel tingly and then my heart would just go rapid. Then I would get the shakes when it was all over. It does cause extreme anxiety and doom and my thought is that it’s from the epinephrine. Luckily my attacks started slowing down and I haven’t had one for almost 4 months *knock on wood*. My advice is to talk to your doctor about a beta blocker or clonazepam. Clonazepam has been a game changer for me with this illness. I know we don’t have true anxiety but I think our bodies are in a constant fight or flight mode and clonazepam just calms my body right down. Hang in there! I hope this gets better for you! You are not alone!
  4. Jessica_


    Thank you for the info @Pistol I will try a different diet first to see if I feel any changes. Milk has always gave me stomach aches but I usually ignore and drink anyway since I love it so much *sigh* more life altering for this illness. I have tried Zofran before and it aways gives me a headache! Phenegran knocks me out. WOW @WinterSown ! Thank you for the warning that sounds awful! Luckily I am SUPER cautious when trying a new medication and usually won’t take anything unless I do my research and it feels right. This didn’t feel right since my doctor is blindly giving it to me as a “maybe this will work”. Im glad you finally found relief with some medication @KiminOrlando I have looked into gastroparesis and I don’t think I have it but who knows. This illness likes to throw curve balls so maybe it’s just starting, either way I agree that I need testing! These doctors drive me crazy when they aren’t willing to dig deeper in our illnesses to figure out what the actual problem is. We sure have to advocate for ourselves!
  5. Jessica_


    Thanks everyone! I messaged my neurologist about it and he suggested Reglan? To help with stomach emptying. I’m reluctant to try it until I know if that is even the cause. I will try and get in with a GI doc to get some testing. My guess is it is GERD since I have had heart burn problems in the past
  6. I have hyper pots too and yes I shake/shiver uncontrollably with my surges. My shaking usually starts when the surge is almost over tho and then I shake for about 15-20 mins after my heart finally calms down. I HATE SURGES. Just know you are not alone!!
  7. Jessica_


    This is a new symptom for me. It started about a month or so ago with a episode of intense nausea that lasted all night. I woke up the next day and it was gone so I brushed it off as something I ate. Then a week or so later it happened again. This past week it’s happened 3 times. The nausea is intense and only happening at night, nothing seems to help. I haven’t thrown up with it but it makes me burp a lot (sorry TMI) Help!!! ???
  8. Jessica_


    I’m sorry you have had a bad week these surges plague me and are definitely my worst symptom in all of this. They cause me such anxiety because I never know when one will come on so it makes me terrified to go anywhere. Just that feeling of doom and feeling like you are literally going to die is terrifying. I pray they stay away and also that yours go away and stay away too!
  9. Jessica_


    Thank you @Bluebonnet08 my iron levels tend to be low as well. I’m keeping my fingers crossed that my surges are gone for good, I hope yours are too!
  10. Jessica_


    So i crashed Jan 2017. My “surges” started a few months later and got so bad I had one almost every single night for almost 6 months. Then after staring my propranolol they weren’t as bad. Now I’m off the propranolol and I haven’t had a surge in almost 4 months *knock on wood* My question is have your surges gotten better with time or disappeared? Or do they linger on and just go away from time to time ?
  11. Jessica_

    Warm back sensation

    Dang! I was hoping I would find somebody who had the same thing since a lot of us share similar symptoms! I’ve had multiple chest X-rays this past year before diagnosed with Dysautonomia with all my ER visits not knowing *** was going on with my body. So yes, this isn’t a new symptom it just seems more prominent since my OI exploded. It’s dedinitely a deeper sensation but I wouldn’t call it pain, just a hot feeling in my middle back. I’ve often wondered if my adrenals are literally on fire Lol
  12. Jessica_

    Warm back sensation

    Anybody else? Sometimes my upper/middle back gets this very warm sensation. Before I crashed a year ago with all of this I had this symptom but only when I took a deep breath. Now it’s there most days especially if I’m stressed. Sometimes it feels like it’s on fire Thoughts?
  13. Jessica_

    Palpitations lying down?

    My heart used to feel like this constantly. Even if it was 70 it was just pounding out of my chest and I hated it. It seems when I started drinking more and taking my iron and magnesium the pounding sensation has gone away for the most part. Have you had your iron and electrolytes checked?
  14. Jessica_

    OI vs POTS

    I wish she would have elaborated but she would not treat me since I didn’t meet her criteria for what POTS is. @whoami my HR did jump up to 140 or something like that on my TTT but because it recovered back to 100 on minute 8 she said I didn’t have POTS. My Chatecholomine test came back high so she did say in my notes I have a hyperadrenergic response to standing. She also stuck the orthostatic intolerance diagnosis on my chart notes. Which is why I asked my question. Luckily I found a new neurologist who says I have idiopathic Dysautonomia. I suppose I will ask him the difference at my next appt as well.
  15. Jessica_

    OI vs POTS

    My TTT neurologist said I “didnt meet criteria for POTS” then diagnosed me with orthostatic intolerance. What’s the difference? BtW I’ve posted before but this is the neurologist that refused to actually talk to me or I would have asked her