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Hyperadrenergic POTS Symptoms


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10 hours ago, Pistol said:

@PotSdealer - mine was done in the facility of my specialist. The tubes had to be sent out to California ( or was it Colorado 😕). I had to rest in a recliner in the lab for 30 minutes, have labs drawn and then walk through the hospital for 30 minutes ( couldn't - who with POTS can? ), then they drew another set of tubes. --- I know that some docs like to do them during a TTT but it does not have to be done that way. --- In another clinic I had autonomic testing done, essentially a TTT but I stood without being secured to a bed. They checked, breathing, HR, BP etc. 

Awesome thanks for the advice. I am guessing I can take the results of the ANSAR and any other leading tests to try to get an appointment at a major clinic. I live in the Philadelphia area - UPenn is a fantastic hospital for neurology but not sure how specific they are with dysautonomia

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My autonomic specialist says he doesn't like labels. My overall impression is that he believes POTS patients can fall under more than one category and each requires individualized treatment. I know he mumbled at least two categories of POTS for me when he first saw me, but I just can’t remember which ones. He doesn’t even talk labels with me anymore.

All I know right off the bat, he knew the exact meds, salt, water, compression that I needed and I’m ever so slowly improving. I can’t argue with that! I just wished I listened to him about compression garments sooner, stubborn me 😣

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On 3/26/2020 at 7:07 PM, cmreber said:

I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high. 

Oh d*** this sounds exactly like me:(

Who diagnosis this? 

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😨 Major Brain Fog Alert: 

I’m embarassed because my brain fog is so very evident on social media. 😨 Here I go again replying to people who aren't addressing me! I sometimes think things are in sequence, but not always the case 🤭 The shaded boxes confuse me too 😞 I put so much work in my reply, I’ll just leave it mostly as is. My hubby has been assigned as my social media assistant starting right now. 

Sorry, @TigerLily, panic attacks aren’t fun at all. I know. It is a complex thing for me that would take too long too explain.

I’m 100% thrilled with my specialist!!! I’m not much into wanting a label as just getting better. I’m sure if I compare my symptoms and meds to research papers, I could easily figure it out. I’m very happy with his care, and he’s super smart. He was just “thinking out loud” when he said the two subtypes of POTS, like scientists do. Here’s a link to Vanderbilt on subtypes: https://www.vumc.org/adc/42008

Nasal drips: I use to, but it was more allergy related. (I can’t wait to learn what other people experience)

Attacks: I don’t consider mine attacks. All/or many of my symptoms gradually increase and increase the longer I’m sitting or standing upright such as: sweating  (sometimes just my feet or hands or head or a combo), everything gets blurry, poor ability to communicate and think, chest and coat hanger pains, out of breath, trembling, feeling like I’m on the brink of blacking out, etc. + all the symptoms related to orthostatic headaches with sensory auras. Prior to meds my heart would also get very high very fast and I use to get more bouts of high blood pressure too.

I find a place to lie down before things get too uncomfortable. Anywhere is fine with me!

My understanding is all POTS patients can have trouble regulating blood pressure. I think the epinephrine and nor-epinephrine levels can be much more elevated in your subtype? Does that also lead to the higher blood pressure @Pistol ? (I’m still interested in knowing). 

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Here is an excerpt of my article "Hyperadrenergic POTS - an overview of a subtype":

"The third major characteristic is the elevated norepinephrine and epinephrine levels in a person with hyperPOTS. Adrenaline is a neurotransmitter, a substance communicating within the nervous system and it is active in the synapse, the junction between nerves. When present, it causes activation of the sympathetic nervous system, causing an increase in HR and/or BP, commonly known as the “fight-or-flight response” which causes excitement, tremors, etc.  The increase of norepinephrine can be activated by different mechanisms, the ANS produces too much adrenaline ( centrally mediated hyperadrenergic activation ), the excess adrenaline does not get cleaned out of the synapse once no longer needed ( Norepinephrine Transporter Deficiency ) or autoimmune antibodies against cholinesterase receptors.  (Vanderbilt)"

You can find more info on POTS on our Information page. 

9 hours ago, PotsieCrocheter said:

I find a place to lie down before things get too uncomfortable. Anywhere is fine with me!

Huh! Don't I know it 🥴! Unfortunately for me these episodes usually lead to fainting, and in my hay days I would faint or have seizures everywhere, mostly at work in a hospital. I became strangely familiar with all types of bathroom floors ( my go-to choice for peaceful fainting ) in all kind of places, restaurants, stores, offices, church, my garden ... thankfully today I don't faint unless I'm in a flare ( meds, IV fluids and operating strictly within my limitations helped me overcome them ), but since I am currently recovering from a bad flare I rested comfortably on my PCP's floor after fainting while talking to him. Thankfully he is in on my secret and has seen me pass out too many times, even caught me once or twice before hitting the floor!!!!

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fight or flight...yes, tremors...yes, heart rate up to 162 bpm...yes, close to black out: don't let myself get to that point any more, syncope: NO (lucky me) very poor you 😪

@Pistol You’re like an expert juggler of multiple swords on fire, and if just one gets out of sink...🤬

BTW: When you say seizure do you mean syncope? When I think of a seizure, I connect it to the misfiring of the synapses (I had childhood epilepsy with tonic clonic seizures). It may be just a semantics thing.

Thanks for explaining it all, and getting back to me so quickly, in house Nurse Pistol. I apologize for my ongoing brain glitches.

 

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@PotsieCrocheter - my seizures are called autonomic seizures. They look exactly like a grand mal seizures, but are not epileptic. They are caused by excessive vasoconstriction cutting off the blood supply to the brain ( this was caught in an epilepsy monitoring unit while hooked up to both EEG and heart monitor.  It's essentially a severe form of fight-or-flight ... I faint "normally" too, but that is caused from excessive vasodilation and sudden drop in BP ( neuro-cardiogenic syncope ). 

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3 hours ago, Pistol said:

@PotsieCrocheter - my seizures are called autonomic seizures. They look exactly like a grand mal seizures, but are not epileptic. They are caused by excessive vasoconstriction cutting off the blood supply to the brain ( this was caught in an epilepsy monitoring unit while hooked up to both EEG and heart monitor.  It's essentially a severe form of fight-or-flight ... I faint "normally" too, but that is caused from excessive vasodilation and sudden drop in BP ( neuro-cardiogenic syncope ). 

@Pistol Your explanations are always so easy to understand, you don’t know how much I appreciate that.  You can faint and/or have seizures, I really can’t imagine what you must go through everyday. Here’s my summary, correct me if I’m wrong:

Autonomic Seizures: excessive vasoconstriction cutting off blood supply to the brain

Neuro-Cardiogenic Syncope = faint: excessive vasodilation and sudden drop in BP

  • vasoconstriction: tightening of blood vessels = increasing BP
  • vasodilation: widening of blood vessels = drop in BP

This poster is very powerful from the American branch of *STARS organization: https://www.heartrhythmalliance.org/resources/view/452/pdf

*STARS: Syncope Trust and Reflex Anoxic Seizures Organization

 

 

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@PotsieCrocheter - Thanks for the poster - it really sums it up. They should have blood on her head to make it more real yet ( unfortunately I bumped my head quite often ... 🥴 ).

Here is an article you might find helpful: 

Best Wishes - stay strong!!! 

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On 7/20/2020 at 11:56 PM, TigerLily said:

Do you ever get clear nasal drip with your attacks? 

I do. When the HR and BP started, I started get clear nasal drips after meals if I’ve eaten something too large or something I guess I don’t agree with? Never had them before. Seem to be worse when an imbalance is worse or currently present 

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11 hours ago, PotSdealer said:

When the HR and BP started, I started get clear nasal drips after meals if I’ve eaten something too large or something I guess I don’t agree with? Never had them before. Seem to be worse when an imbalance is worse or currently present 

@TigerLily - yes, now that it is mentioned I do get a runny nose after eating, and often right after getting up in the morning. This is year-round and happens with every LARGE meal, so I don't contribute that to seasonal or food allergies. I wonder if it has to do with the ANS?

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2 hours ago, Pistol said:

@TigerLily - yes, now that it is mentioned I do get a runny nose after eating, and often right after getting up in the morning. This is year-round and happens with every LARGE meal, so I don't contribute that to seasonal or food allergies. I wonder if it has to do with the ANS?

this does a pretty good job summing you the array of sinus-type symptoms. Notice the commonly searched keywords in the abstract

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6028164/

Before pots symptoms I maybe had a “sinus headache” once or twice in the last decade? Now I  noticed as well when I start to overdue other mentally or physically i get a pressure between my eyes on the bridge of my nose 


 

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  • 6 months later...

Hyper pots and sleep issues - Is anyone else waking up every couple of hours during the night? And is anyone getting episodes of tachycardia (heart rate 100bpms or more) early in the morning? I'll go to sleep at 9pm, wake up around 11pm-12am with a elevated heart rate (75-85bpm), go back to sleep and wake up again at 3am-5am and my heart rate will jump from 54bpms to over a 100 within seconds. Feels like I am dying. It's been happening almost every night for a week since I started a low dose of Atenolol (25mg a day split into three doses). I'll take xanax for the tachycardia but now I don't even want to sleep half the time. I dread going to bed now. 

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Hello @graphiteartist21 - this happens to me when I am in hyperadrenergic flare. It happens b/c the adrenaline level does not drop after 3 hours of sleep, like it is supposed to ( to allow deep REM sleep ). If it started after the Atenolol was started you may have to switch to a different beat blocker. I was on Bisoprolol and Metoprolol without success and had to switch to Carvelidol, which helps a lot. Check with your doc. 

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  • 4 weeks later...

TigerLily, sorry it's been a bit since I've been back on here. I was originally diagnosed by a cardiologist at Stanford, and then did further testing at Mayo Clinic in Arizona with neurologist Dr. Goodman. 

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On 3/26/2020 at 7:07 PM, cmreber said:

I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high. 

I have Hyper Pots (high standing NE), IST and what is called delayed Orthostatic Hypotension. So my TTT looks like this, Laying 102 heart rate, laying 118/78 blood pressure, Head up tilt after 2 minutes 150 heart rate, 155/110 blood pressure, Head up tilt after 10 minutes heart rate 162, 88/57 blood pressure. The rise in BP is because I have an immediate rise in Norepinephrine head up or standing, then eventually I guess the NE runs out and my veins start to dilate and my blood pressure crashes. It's like tug-o-war. When my laying heart is really high during a flare my laying blood pressure is usually high especially if I load up on salt. Which meds do you use. I really could not tolerate any

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