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About Jessica_

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  1. 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 🤞🏻
  2. 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!
  3. Hyper Pots & exercise

    @TCP Wow how scary! Do they think your tumor was the cause of your autonomic issues? Did you have it removed?
  4. 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!
  5. 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!
  6. 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!
  7. 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!
  8. 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.
  9. Midodrine

    Thanks everyone! It sounds like I need to start with exercising 💪🏼 I will go check out the Vanderbilt website for sure. @Pistol I did have my catocholomines checked my norepinephrine was elevated at 729. I was referred to the autonomic testing lab and the only POTS specialist in my area and based on my TTT she wouldn’t see me because I “didn’t meet criteria for POTs” because my HR went down after minute 8. Even tho it went from 80 to 156 and my BP went thru the roof. I felt totally defeated.
  10. Midodrine

    Thank you @Debbie Rose I am happy that anything on my post was helpful to you @Pistol you are right this is a chronic illness for sure. I have yet to accept it and maybe that’s some of my problem. My symptoms have constantly changed since this started a year ago. I was way worse off in the beginning than I am now and everyday was a constant battle to live thru. For the most part right now I am functioning which I am forever grateful for because I know there are people with this who are bed ridden. Still tho I have my moments of flare and symptoms and i regress a little. I just wonder with the change in symptoms if my body doesn’t need the midodrine now and that’s why it’s making me sick now? That was my question. @Jrd030 here’s the thing on that- I have yet to find a doctor to tell me what kind of POTs I have. I *think* I have the hyperadrenergic type based on my neurologist noting in my chart “hyperadrenergic response to standing” but then she wouldn’t see me or tell me what to do about it. So I AM drinking 1-2 liters of water a day and taking electrolytes, I haven’t dared start the excercise because my tachycardia gets so bad and I haven’t dared up the salt because my BP is already high. Your thoughts? The only thing that is helped me and got me to do the water and stuff is google and this site.
  11. Midodrine

    Thank you all for your responses. Crazy how all of us have similar experiences. I see my neuro on the 31st so I will definitely talk to him about it. I have kind of lost my faith in doctors sadly and haven’t found one who really cares to help me yet. I have been advocating for myself since this started and the only thing that has ever helped me is google and asking others in this site!
  12. Panic Disorder And Pots

    I totally think they are related and I also believe panic can induce pots. I am proof. I went into a panic attack during a SVT episode and have had full blown POTS since that day. Before that day I was very healthy and never had any of the POTS/dysautonomia symptoms. Now I have dysautonomia with severe anxiety and panic disorder. Can’t tell what is what anymore.
  13. Midodrine

    So I have been on Midodrine since last May and at the same time I stopped Atenolol. After that some of my symptoms improved like the bag of bricks on my head feeling that would come on suddenly and the head rushes that made me feel faint if I stood still too long or walked too far. It’s been about 9 months and I’m thinking about getting off the midodrine, lately I have only been taking 1/2 a 5 mg once or twice a day and when it kicks in it makes me nauseous and a little off feeling. It’s jist not feeling like it did before. Any thoughts on this? My symptoms have constantly evolved and changed since this started a year ago. Maybe I don’t need midodrine now? Anybody else come off of this and if so what was your experience?
  14. Wow how interesting! Thank you for sharing at this point im almost willing to try anything so I’m going to give this a shot. Might be a silly question but would being sensitivite to gluten be the same as celiac Dz? My neuro just did a blood test to r/o celiac but I haven’t got results yet.
  15. Methyldopa

    Thank you for your reply! This is why I love having this forum. Sounds like I better just stick to what I’m doing for now. My HR being controlled is my biggest issue. My BP is borderline high but the Propanolol seems to help.