Jessica_

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About Jessica_

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  1. 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.
  2. 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
  3. Jessica_

    Panic anxiety

    I have heard it works amazing for most people! I seriously just need to try it despite my fears of medication. Crazy to have anxiety over taking anxiety medication it’s madness! Have you found it helps with your attacks?
  4. Jessica_

    Panic anxiety

    I feel the exact same way!! The week before my period is usually the worst of all. Like you, I have about 1 normal week a month where I’m calm and can actually handle the freeway and other situations. The only thing helping me right now is pharma-gaba and even with that I still have anxiety it just takes the edge off. I have been given Klonopin which I hear is amazing but I still haven’t dared try it.
  5. Jessica_

    SVT with POTS

    My SVT induced my POTS. I definitely think there’s a link with the two as I have found multiple people who have POTS also have SVT. I had an ablation done a year ago to fix the SVT and haven’t had runs of SVT since. I do still have daily sinus tachycardia because of the POTS but the highest it goes is 170.
  6. Jessica_

    Lets talk...Tachycardia!

    I can relate to this SOO much! This is definitely my worst symptom. I read somewhere that touching something ice cold helps calm the attack down, I tried it with my last attack and it helped but I’ve only tried this once so who knows. The only thing that helps me to get an attack to stop is my beta blocker (Propanolol). I have found that anxiety plays a huge part so if I know I’m going to be in a place where I’m prone to have anxiety or an attack I will take a Propanolol as a precaution and also Pharma-GABA. GABA helps to keep me calm and it’s over the counter. If anyone else finds a cure for these attacks spill the beans because these are terrifying and life altering! Just know you aren’t alone!
  7. Jessica_

    New here!

    I’m sorry you suffer with them too! I just woke up and had one and it’s awul. its Like my body just freaks out and I’m just there for the ride with no control. Deep breathing doesn’t help, trying to “relax” doesn’t help. I hate it! Each time this happens I feel like I’m going to die. Hoping we both start feeling better soon 🤞🏻
  8. Jessica_

    Klonopin

    Thank you! I also respond weird to meds. I still haven’t dared try it but I’m going to take one today and see how it goes 🤞🏻
  9. Jessica_

    Hyper Pots & exercise

    @Lily thank you that is helpful! Keeping a log is actually a very good idea. @toomanyproblems I haven’t actually tried exercising since my illness started so I’m not sure how high it will go but my HR is usually 120-130 walking around and sometimes will go to 170 if I do stairs. So I’m not sure what it will be when I start this exercise regimen. Starting today so we will see!
  10. Jessica_

    Hyper Pots & exercise

    @TCP Wow how scary! Do they think your tumor was the cause of your autonomic issues? Did you have it removed?
  11. Jessica_

    Klonopin

    So I just got home from my appointment with my new neurologist and he said all my labs are normal (is it weird to not want a normal lab? Lol) so I don’t have celiac or MCAS or autoimmune dz which I am actually grateful for. He says I have Idiopathic Dysautonomia so they basically don’t know my cause. He recommended I try Klonopin to help with my anxiety and adrenaline attacks. The way he put it is my nerves are just firing off norepinephrine in my body so my body is over responding to little stimulation (like when I drive or am in a crowd) now to my question; anyone else with hyper pots tried Klonopin and what was your response to it? Anybody on a beta blocker with their klonopin? Crazy to have anxiety about taking an anxiety medicine!
  12. Jessica_

    Hyper Pots & exercise

    Thanks guys! I will try not to pay attention to the number as hard as it will be. I’m so used to being obsessed with my HR and I think it’s time to let it go and start fresh. I will keep you posted for sure and hopefully this will get me living again! 💪🏼🤞🏻 As for PT I’m not sure if my doc would do that for me. I think I will start with the bike and some relaxing yoga and I’ve also read tai chi is good for hyper pots so we will see how it goes!
  13. Jessica_

    What is with all the palpatations????

    I used to get these super bad and some of them would make me feel light headed. I read something that taking magnesium is a treatment for these and so I started taking 250mg of magnesium everyday and now I hardly ever have pvcs or pacs. And if I do I can’t feel them so it’s great!
  14. So I’m going to start exercising per my cardiologist and the advice of my fellow Potsies. I have my recumbent bike and all so here’s my question to those who have a exercise regimen; Do you pay attention to your HR when your exercising? Do you have a target HR or stop when it gets to a certain number? Also what exercise has helped you the most? It seems the bike wouldn’t give too much of a work out but maybe I am wrong. My fear with this is I don’t want to drop dead from exercising (irrational right? 🙄) but it’s a legit fear of mine which is why I haven’t started yet. My cardiologist says don’t go off a number go off how you feel but I’m too scared! I seriously think I have PTSD from all my attacks and SVT, any advice appreciated!
  15. Jessica_

    Midodrine

    @Debbie Rose it’s so true that the treatment plans are very individual. Which is crazy because we all have so many similarities! I hope someday this “syndrome” is figured out. It’s AWFUL.