Jessica_

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!

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.

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?

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.

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.

In a previous post someone mentioned they were using Methyldopa that helped with their surges/attacks. Methyldopa is also coming up the more posts I read here. I am contemplating asking my doc to switch me from Propanolol to Methyldopa but I’m curious other people’s experiences with it? Does it help calm anxiety too? That’s my biggest symptom right now. The Propanolol helps control heart rate but for whatever reason I’m still in fear 90% of the time. Any input would be appreciated

I have hyper pots too and was searching for answers to your question and stumbled on this post, hope it’s helpful to you too!

WOW! Your story is almost exactly like mine! You are the first person I have found in all my googling to have Dysautonomia induced by SVT. Like you I had runs of SVT since my early 20’s (I’m 30 now) and they would be fairly short and not cause symptoms and life would go on as normal when they were over. Until last January, I went into SVT but this time it was totally different, I almost fainted and was very sweaty and went into panic as well. Called 911 and by the time they got there SVT had run its course but my heart was still going 170 sinus tachycardia. They put me on beta blockers and sent me on my way. Since that day it’s like I’m in a whole different body! My HR is usually 120-130 in the morning and stairs make it go 150 ish. I also have attacks all the time of 170-180 (sinus) and nothing stops those except the beta blocker. My hands are always sweaty and my head pressure is constant and even causes my ears to pop. My anxiety is also thru the roof, but if anyone felt like this they would have anxiety too. Everyday is a struggle. I have been to doctor after doctor and still haven’t found the cause of my PoTs. I had a heart ablation too so at least hopefully the SVT is gone for good. Google has been my biggest help with this and drinking 2 liters a day and my beta blocker have helped a ton. I also had skipped beats that would stop me in my tracks and make me feel faint but after I started taking magnesium those are pretty much gone. I was also put on midodrine by my cardiologist and that helped tremendously with my morning light headedness. Now if my heart goes fast I don’t feel like a bag of bricks is being dropped on my head since starting the midodrine. All my tests have been normal except my iron, magnesium, potassium and vitamin D. I highly recommend you get all of those checked. Get into a neurologist ASAP or a doctor that knows about Dysautonomia! It took me almost a year to finally get into one and have a TTT and I’m still struggling for answers. I hope you are able to find some soon. Just know your not alone!

ANA was negative. Catecholamine test showed my norepinephrine went from 220 laying to 729 standing which she did note was a little high. Cortisol, ACTH, Aldosterone normal. I don’t think I’ve ever had my renin or sodium checked. I’ve had my electrolytes checked and my potassium and magnesium have been low a couple of times and other times they are normal (ER visits from attacks). My thyroid doc has said my Iron is low at 8 and my Vitamin D is low so I am taking supplements. I have Hashimotos but not being treated because my thyroid levels are normal currently.

Right?! Pretty incredible this “pots specialist” wouldn’t treat me. Here I sit asking others to help me figure out what her notes mean.

I’m happy that you were able to figure out your cause! I’m hoping I will eventually. My new neurologist is ordering me another ANA and he’s also checking my Vitamin levels and ruling out celiac. All my symptoms came overnight after a SVT attack so I can’t imagine that I have an illness that appeared overnight but maybe it was just going under the radar or something. I desperately want to know WHY my body is doing what it’s doing.

I wasn’t on the beta blocker til after the test, just midodrine which I had stopped the day before in preparation for the TTT. My HR went up to 156 on the test but because it resolved on minute 8 or something the neurologist didn’t consider me PoTs. It’s crazy to me because on a daily my HR spikes 30+ beats everytime I stand up, even with the beta blocker.

The norepinephrine went from 220 laying down to 729. Not as high as most with hyper-pots. It’s weird because a lot of my worst symptoms aren’t when I’m standing up it’s when I’m sitting or laying down!! I mentioned this in a previous post but I will note again that my “pots” or whatever this is was induced my a SVT attack that I had a year ago. Before that day I was in pretty good health.

I am working with an EP but he doesn’t have any answers and referred me to the neurologist *SIGH* any ideas what causes hyper-pots? I’ve googled and googled and I can’t find any answers that fit what my body is doing. All my tests for “underlying causes” such as RA and adrenal issues come back normal. Could this all be my heart? So many questions!

Wow thank you! I am grateful to be at a 1, hopefully it stays that way and doesn’t progress.

At least we are not alone! Keeping my fingers crossed for us 😩

So I am looking over the Neurologists chart notes and I just do not know what any of it means. Since she refused to see me since I “don’t meet criteria for PoTS”. Anybody know what any of this means? Other Scores: COMPASS-31 Domain Scores: Orthostatic Intolerance: 9 Vasomotor: 0 Secretomotor: 4 Gastrointestinal: 13 Bladder 0 Pupillomotor: 5 Total COMPASS-31 Score: 57.85 (expected score in normal subjects 9.6 +/- SD 8.1; neurogenic autonomic failure 39.2 +/- SD 17, autonomic neuropathy 20.9 +/- SD 13) Composite Autonomic Severity Score (CASS): Sudomotor 1 Cardiovagal 0 Adrenergic 0 Total 1 Autonomic Reflex Study: Comments: 1. QSWEAT responses were normal by volume, though a relative reduction in distal (foot) was noted. 2. Heart rate responses to deep breathing was and the Valsalva maneuver were normal. 3. The blood pressure responses to the Valsalva maneuver were normal. 4. The blood pressure response to 10-minute head-up tilt was normal; heart rate response was excessive during mid-portion of HUT, though improved by minute 8. 5. Pupillary responses were intact. Autonomic Diagnosis Codes 101 Orthostatic intolerance (OI) Conclusion: Cardiovagal, cardiovascular adrenergic and post-ganglionic sympathetic sudomotor responses were intact. There is no evidence of neurogenic autonomic failure or autonomic neuropathy affecting sudomotor or cardiovascular adrenergic/vagal function. There was transient, non-sustained orthostatic tachycardia on head-up tilt, though this did not meet criteria for Postural Tachycardia Syndrome (PoTS) today due to resolution during course of Head-up tilt. The robust increase in norepinephrine noted on orthostatic catecholamine testing 7/19/17 suggests a tendency towards a mild hyperadrenergic response to standing. ****** Should be noted I am on a low dose beta blocker and i am still struggling DAILY. My biggest symptoms right now are nightly palpitations, even if my HR is 70 its POUNDING out of my chest and it feels awful. Anxiety is the next. HELP!

Wow thank you I will go look it up! I’ve actually never meditated so I don’t know very much about it. I hear so many amazing things that meditation can do so I’m anxious (ha) to start! At this point I would almost try anything.

Thank you so much for your response! I have been trying to find ways to naturally calm my anxiety. My problem is with my 2 and 4 year old I’m having a hard time finding the time to do the meditation and yoga that I would like to be doing. I am also in therapy for childhood trauma. I find it interesting that a lot of us potsies had traumatic childhoods or other anxiety issues before the pots came on. I wonder what the link with that is 🤔 I am hopeful that I can get a handle on this even if it takes some medication temporarily. *fingers crossed*

I don’t mind at all! I am currently taking one 10mg pill twice a day. The bottle says I can take 2 but I am trying to just stick with 1 so my body doesn’t become too dependent on them. I started these in September. My goal is to be med free someday (because I hate medication) but lately I am discouraged that it will ever happen. I stay away from caffeine too! I miss my frappechinos

Thank you all for your replies! Very helpful. I have yet to find my “underlying cause”. My neuro says I have some form of dysautonomia and she thinks something auto-immune is coming. I don’t think you just get POTS without a cause so I am hopeful the new neurologist I see soon can give me some answers. My BP tends to be on the high side, usually 112/90. If I am having an attack it goes up to 160/110. I have tried compression stockings but I didn’t see a benefit in them. It’s crazy how we are all so different. Thanks again for all of your input!

Just curious those of us lucky enough to have the hyperadrenergic type of POTS what treatments have worked for you? Does exercise help with the Hyper type? Thank you!

Thank you! The struggle is VERY real. Having Little’s makes it SO. MUCH. HARDER. Cheers to us for being mommy warriors with this terrible illness! 🍻

OMG the exact same thing happens to me! I will be asleep for 2-3 hours and wake up in a sweat and heart racing and eventuallh the tremors start which means it’s coming to an end. I am actually on Propanolol right now which has helped with the night attacks. It’s not helping with the anxiety tho and the sweating and sometimes my HR will still go up to 140 with these feelings which is a improvement from 170-180. I would just like to find a med that covers it all. If that’s even possible!

The only SSRI I have tried is Zoloft and within an hour of taking it I would have an attack every time. It also made my daily anxiety worse. Maybe a different SSRI would work? *sigh*