Jessica_

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!!

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!!! ???

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!

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!

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 ?

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

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?

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?

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.

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

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?

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.

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.

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!

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 🤞🏻

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 🤞🏻

@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!

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

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!

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!

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!

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!

@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.

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.

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.