Pistol

@Scout - my specialist usually recommends to only increase or add one med at a time - otherwise we would not know which one was helping or making things worse. That potentially could be what your doc is thinking.

@Derek1987 - you stated in another article that you have been referred to Vanderbilt. They will be able to do the testing properly and will also be able to give you diagnosis and treatment suggestions. They also will be able to explain everything that is going on so you will understand it. Personally - if for financial reasons I had to choose between the adrenal guy and Vanderbilt I would pick Vanderbilt b/c they can determine if you have adrenal issues.

@Jojomar - I have found in the past through research that Sinus node ablation is NOT recommended for either IST nor POTS. Here is an article about it: http://electrophysiology.onlinejacc.org/content/early/2016/12/12/j.jacep.2016.09.014 In this article ( which is very long and in medical terms ) it describes a study that was done on this subject and the conclusion of the study states: Conclusions Procedural intervention is reserved for severe refractory cases of IST. The results of the present study indicate that IST ablation/modification achieves acute success in the vast majority of patients. However, on long-term follow-up, successful symptomatic relief drops substantially with a corresponding high recurrence rate. Complications are fairly common and diverse.

@RichGotsPots here is a list of normal neurotransmitter levels as per Mayo clinic: In @Outaker's case his NE was normal supine but elevated upright - that is typical for hyperPOTS. Mine were almost 700 supine and abobe 800 upright and I have hyperPOTS. The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines: norepinephrine lying down: 70–750 pg/mL standing: 200–1,700 pg/mL epinephrine lying down: undetectable up to 110 pg/mL standing: undetectable up to 140 pg/mL dopamine less than 30 pg/mL with no change in posture

Hmmmm - norepinephrine drip, huh! Who would have thunk!

@KiminOrlando - I know several people that have skin rashes caused by autoimmune disease. Could it be a new symptoms of your AI? -- MCAS gets tested by blood work and urine samples, I was tested by my ENT/ allergist. Maybe you could get tested for that? They can also do simple allergy testing - you could be allergic to something you are not even aware of. My daughter has multiple allergies, including an allergy to a fungus that exists on our skin!!!! We can develop allergies at any age and suddenly. My husband developed a sudden allergy to shell fish in his 40's. Never had it before. So there are many explanations for the rash - I would look into all of them! --- When my husband is exposed to shellfish he gets hives over his entire body - he essentially IS a giant hive! And it is itchy. I used to run him a warm bath and dumped half a container of oatmeal in the water and he soaked in that. It always relieved the itch - maybe an oatmeal bath could soothe your rash a bit? I hope they get to the bottom of this soon - it is a long time to suffer from a rash!!!!!

I used to get several PVC's in a row, it happened when my ANS was very unstable and I had frequent tachycardia events at that time. It felt exactly as you describe - powerful contractions that knocked the wind out of me. Very scary! They caught a bunch of those on monitors. I was told not to worry unless they go above 6 in a row. Today I hardly get any PVC's at all since I am well controlled on medications . When I do get them I increase my BB and that takes care of them.

@Scout - I believe you are correct with your theory about sympathetic overcompensation in response to water exposure. I have come to despise water since I get the exact same response as you. I think it most likely is caused by the sudden temperature change and the sensation of water on our skin that sets off the adrenaline. I have avoided swimming for years now b/c it is definitely not pleasant to me! And showers are like actual hard work to me!

@Derek1987 - often in dysautonomia our bodies react opposite of what they should. Normally caffeine elevates the BP by constricting the blood vessels. There is also a theory that caffeine increases your adrenaline levels. But when you have dysautonomia the ANS acts - or reacts - in different ways, so I guess anything is possible! Many people here have reported feeling better after caffeine. Did you mind the drop in BP? Regarding the dizziness - it is one of the commonly reported symptoms of POTS and affects many people here. Sometimes you can have vertigo - here is a link describing vertigo. https://www.webmd.com/brain/types-of-vertigo#1 In my case lightheadedness and dizziness usually occur when my BP is low - or when it rapidly changes from high to normal or low. Sometimes the dizziness is transient and sometimes it can last for days. They have checked me from head to toe, MRI's, neurological exams - you name it. All perfectly fine anatomically. So I have resigned my self to the fact that it is "just POTS". However - if it continues you probably should seek help from your doctor since it can have other causes. My PCP prescribed Antivert for the dizziness and I take it as needed and it helps.

@HangingByAThread - I think it warrants a second opinion. A HR below 30 BPM - no matter whether you are asleep or not - should be taken seriously if it continuously happens.

@potsiebarbie - yes, I do. I even pass out if I eat a big meal, so I avoid them. I was told the palpitations and BP changes after eating is caused by sympathetic stimulation. Normally the parasympathetic nervous system kicks in for digestion but since all of the blood goes to the abdomen after eating to aide in digestion sometimes the sympathetic NS reacts to that to make up for the "blood loss" and we get tachycardia, palpitations, BP changes etc. In my case beta blockers took care of the palpitations and I eat 6 small meals a day, that helped me.

@jklass44, @toomanyproblems - in the beginning of my illness I was on Metoprolol which dropped my resting HR into the 40's but did not much for the tachycardia or the PVC's. I definitely had symptoms like chest pain, shortness of breath and dizziness with the slow HR ( which felt different than the symptoms from tachycardia ) but I minded the tachycardia more.

@p8d - Yep. In my case it is due to photosensitivity ( bright sunlight ) and heal intolerance, both caused by my POTS. I cannot go outside in the summer unless it is early morning or after sunset..Even with sun glasses on.

@Scout - I used to be the same way. At Dr appointments the BP would be 90/50 and minutes later the doc would take it and it would be 148/98. Once I kept an hourly journal for 2 days and my doctor said that he could not even treat me because the BP would change so erratically and fast! Every hour it was a completely different reading. But my specialist started to treat me with BB and calcium channel blocker ( in addition to other meds ) and the BP switched to being more even. Today I am well controlled on weekly IV fluids in addition to meds.

I second what @MomtoGiuliana states. For me extra BB is the first choice - if that does not help IV fluids ALWAYS fix it.

@Outaker - thanks, that might be what is going on. Her BP normally runs 150/90 on a good day ( with meds ) but used to get as high as 240/120 and higher prior to meds. She used to be in hypertensive crisis often. @Stark - that might be what is going on. I took her BP this morning and it was 150/90 sitting but her pulse was 50. So when she gets up and her HR goes to 80 - I guess that would be still POTS. Man - we people act weird!

I currently have my sister visiting. She also has hyperadrenergic POTS like me and is going to see my autonomic specialist. As we are preparing for her appointment she told me that she NEVER has tachycardia, only bradycardia. But she has every single symptom that I have, including hypertension upon standing, orthostatic and exercise intolerance, brain fog, fatigue, palpitations … you name it. And she has POTS. I have never heard of someone who has POTS with bradycardia - only that sometimes we can get bradycardic but mostly have the tachycardia. Anyone else here have POTS without tachycardia?

@Derek1987 - my PCP and I have been wondering for years if there is a connection between the immune system and POTS. I used to hardly ever be sick, despite working in a hospital and having a school aged child ( you know - they bring home all the goodies ). Since onset of POTS not only do I get sick more often but also become more ill and often I need 2 rounds of antibiotics. And I am homebound - so I don't go anywhere to get germs. But I have not yet been able to find ant evidence or research that would explain that. Regarding the tonsils - it sounds like a tonsillectomy would definitely fix that for you. Frequent infections like that can wreak havoc even on healthy people - let alone a dysautonomiac! But I personally - through experience - would wait with that surgery until your POTS is more stabilized, simply because it is not an easy to recover from surgery. Do you see an ENT doctor?

@dancer65 - thank you for your response - that is powerful testimony and I am sure it is familiar territory to many of us! Again - thank you for your honesty and sharing your story!!!!

@Derek1987 - I have hyperPOTS and did not do well with Midodrine. In my case it definitely would make my symptoms worse if I took it in a hyperadrenergic flare. What symptoms did your doctor prescribe it for? I would clarify this with your doctor. It is difficult to say if your symptoms are from POTS or anxiety, they can mimick each other. Since you have a diagnosis of anxiety it is possible that you should check with your psychiatrist to see what else you could take. Also - if what you are prescribed to take is not working and the anxiety is uncontrollable you can go to the ER - they can give you something to ease the symptoms and since it is the weekend and you already took more than your daily dose of Xanax the ER is probably your best choice. Don't feel that you have to endure - anxiety ( whether from POTS or not ) is real and should be treated right away.

@Derek1987 - I get those looks too. Once I went to the ER b/c I could not walk without fainting. When I told them they said they wanted to see if I can walk b/c they thought I meant there was something wrong with my legs. I tried to explain but they insisted. So I got up, took a few steps and promptly fainted. I got hurt in that fall too - apparently they did not even catch me. Derek - I am really sorry about all that is going on. I think that maybe your wife might think that you can do more than you say but we here know that you cannot. It is the nature of the beast - that is why they call it the invisible illness. And she probably has been leaning on you a lot due to her illness that now it is hard to understand that she no longer can, at least not at the moment. And since you have been doing so much for your family that now it is frustrating and downright depressing that you cannot do the simplest things. I understand - I have been there. Both of you need to be patient and understanding of each other - I have learned that I cannot expect others to know what is going on inside me. She is always invited to ask questions here on the forum - we my be able to explain what it is like. In the beginning of my illness it was difficult for my family to "get it". But once I showed them a video about POTS and thy heard testimony from others it got better. I also had my husband read the dysautonomia project. It is one thing for your wife to know that you are ill ( as she knows from doctor's appointments ) and another to know what it is like or to accept the reality of you not being able to function. Hang in there - it is a strain on any relationship - you are not alone.

@bombsh3ll - although you lost me with a lot of the medical lingo ( most here are not in the medical field ) I do believe your theory has a point. Once we get symptomatic we become inactive due to our symptoms, which then lands us in bed or at least stationary. So by the time we go to see a physician we already are deconditioned - but the reason for this is our symptoms. In other words: the symptoms cause us to decondition - not the other way around. The same with anxiety: our symptoms are scary - so we become anxious when we get them, not the other way around. Unfortunately the medical community still thinks that the mind controls the body - many docs have not yet discovered that with the discovery of ANS dysfunction we now have proof that it is not always that way.

Have you considered changing your eating habits or diet? Are you allowing yourself to retreat when overexcited?

Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date: how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too!

@outofadream - I saw a nutritionist since I hardly could eat anything without setting off the reflux. I too get it bad from water - I only drink gingerale, that helps me and I tolerate it better. The nutritionist told me that it is OK to steam or simmer veggies - I always thought they would loose their nutrition but she said as long as we consume the water they were heated in we still get most of the nutrients. It has made a huge difference! On days when I do not get enough veggies in I take a high quality liquid nutritional supplement. Have you tried elevating the head of your bed to avoid reflux at night? --- The GI cocktail and Carafate slurry really helped me with the reflux into the throat since they are both liquid and coat the esophagus, not only the stomach.