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@outofadream - what has helped me at times to avoid syncope is crossing my legs, sliding my back down a wall or sitting on my heels. This has helped if I do it immediately when presyncope appears. Also chugging down cold water.

@MeganMN - venous pooling IS a type of cerebral hypoperfusion - the blood goes "south" and not into the brain, because the blood vessels cannot establish the blood pressure needed to pump the blood back up to the brain. Vasoconstriction is another mechanism but has the same effect - not enough perfusion in the brain. No - My doc and I have considered long-term effects of the hypo-perfusion ( since my seizures would cause between 15 - 45 seconds of severe hypoperfusion. And no - there are no known long term effects. I was evaluated by a neuro-psychologist twice ( 3 hours each ) to determine if the seizures or the general hypo-perfusion as well as the concussions obtained during falls could have contributed to my ongoing issues with forgetfulness, ADD, brain fog, wordfinding difficulties and short-term memory loss. In my case there was no proof of any damage ( even after two brain MRI's ).

@MeganMN - yes, I have this frequently when I overdo things. It is part of brain fog and is - so I have read - caused by decreased circulation to the brain. In my case that must be true - when I wake up after seizures from sudden vasoconstriction I cannot speak anything understandable - I cannot pronounce words or even find the ones I want to say. This lasts for about 30 minutes. Today I barely take seizures anymore ( thank god and IV fluids!!!! ) but I still get the wordfinding problems and slurred speech when I have been too active. Lying down and resting helps. --- Have you checked your HR and BP when you get like that? --- It also can be a sign of poor attention ( which is common in POTS ). I take Ritalin to help with fatigue and brain fog and it has been very effective for me.

Personally - I think it's a hoax. I tried Hawthorne and other supplements that supposedly stabilize the ANS but none of that worked for me in the least. I believe IF it does anything it might support a NORMAL ANS - but not ours!!!!!!

@aelizabeth3300 - I had all the same testing done at a major autonomic clinic here in the US, within the first year of onset of my worst symptoms. They tols me that my testing came back normal. However - the clinic had me seen by an intern and the neurologist that was an call for the autonomic clinic that day had nothing to say. I was diagnosed based on symptoms. TTT x 2 and neurotransmitter testing by another autonomic specialist in another facility a year later. I was told that autonomic testing is not always correct - it depends on your autonomic tome that day ( I was asymptomatic during testing )

Yes - if it goes up and then down again it is actually a normal response. It should STAY elevated in order to be POTS. This goes for all types of POTS. In hyperPOTS usually the BP goes up along with the HR.

@gossamer4448 - to be sure you need to have a Tilt table test ( TTT or HUTT ). If your HR goes up more than 30 BPM sustained within 10 minutes and your BP does not drop ( or even goes up ) it is POTS . To the best of my knowledge. When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt’s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used. This is from the following website https://ww2.mc.vanderbilt.edu/adc/38847

@gossamer4448 - to be diagnosed with POTS a person must have an increase in HR of 30 BPM ( or above 120 BPM ) SUSTAINED within 10 minutes of standing, WITHOUT a drop in BP.

@p8d - I am so happy that things are looking up for you!!!!! I am not sure if I follow - doesn't "making the numbers look better" mean your vital signs are improving? When my numbers went from hypertensive to normotensive it was what we wanted to happen - the numbers went from too high to normal-ish. Is there something I m missing?

@MeganMN - I am happy and relieved that nothing obvious showed up in the scan!!!! Be well - remember: you cannot take care of others if you do not take care of yourself!!!

@Trying - I am familiar with the feeling of " brain burning " upon getting up. In my case it has been determined to be due to loss of circulation in the brain from excessive vasoconstriction, a faulty response of the ANS to the upright posture. The following tachycardia is another mechanism of the ANS to bring back circulation. I have had the tachycardia continue after lying down for a few minutes before slowing down. It can also be prolonged if your daughter was anxious once lying back down. Yes - supine tachycardia CAN be a symptom of POTS and it easily can be CAUSED by orthostatic hypotension. It would be uncommon if the tachycardia starts while lying down, without a trigger such as standing up.

@gossamer4448 - not eating for extended periods of time will cause all of those symptoms. without food you do not have energy, your cells do not get the nutrition they need and eventually they die. Metabolic adjustments and actions dealing with breaking down stored fat into energy will add to that. If you are not able to eat - have you tried liquid nutrition such as Ensure of instant breakfast? . They are easy to digest and provide at least basic nutrition and protein.

Dear @MeganMN You do not have to feel that you need to appear - or even BE - OK. You are not OK, you are scared and frustrated and no longer able to do what you are used to. There is nothing wrong with that, so you do not have to spend your already dwindling energy on making it look like things are OK. Break down if you need to - I have many times. Strength does not mean you are perfect or above anyone, it means you get back up. That's all.

@bombsh3ll - are you seeing an endocrinologist? I m wondering if your POTS symptoms could be a result of the volume depletion from excessive urination rather than actual autonomic dysfunction?

Hi @bombsh3ll - here is an article about POTS subtypes and their significance ( you probably already are aware of it ) https://ww2.mc.vanderbilt.edu/adc/42008 I was diagnosed with hyperadrenergic POTS after 2 TTT's ( one showed NCS and one was supposedly normal but later determined POTS by an autonomic specialist ). I also had basic autonomic testing in a major US autonomic clinic but they failed to diagnose me. Eventually I saw an autonomic specialist who suspected hyperadrenergic POTS based on symptoms. history and HR/ BP readings and then confirmed the diagnosis by testing neurotransmitters ( elevated both resting as well as upright and active, although not even symptomatic at the time ). In my case it appears to be genetic since 3 generations of females in my immediate family have either been diagnosed with it or have symptoms of it ( the young ones have not been diagnosed quite yet ). So - I have a designated subtype and an underlying cause ( genetic ) but it really does not matter in my case since it is chronic and progressive anyway. THAT BEING SAID - not every type of POTS has that prognosis, many types can be managed and even disappear after some time, so yes - knowing what type of dysautonomia you have is very important.

@misseb - postprandial ( after eating ) symptoms are a KNOWN AND COMMON symptom of POTS, so are many other GI problems like nausea, vomiting, diarrhea, constipation, GERD, slow or fast gastric emptying … she is wrong and not only misinformed but also rude and ignorant. Here is an article you might want to get to her and also read for yourself https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3737368/ I also used to have terrible problems with eating, especially evenings. I am on proton-pump-inhibitor to minimize stomach acid and used to take Zofran for the waves of nausea and diarrhea from IBS. What also helped me is minimizing intake of carbs in the evening and - most importantly - avoid large meals all together. I snack all day and eat small meals 6 times a day. I tolerate this much better and actually get more nutrition that way. Also elevating the head of your bed slightly can help with night time reflux. Hang in there - there are many things you can try until you can see another GI specialist. Be well!

@potsiebarbie - anytime you have a monitor it is a hit-and-miss situation: the palpitation may or may not occur. 4 weeks is about as long as you can have an ambulatory monitor, so I do believe that there is a very good chance it will catch something. So - if you feel something wrong, make sure you push that button!

I used to have this happen to me. It was caused by blood pooling and the heart trying to pump with all its might to compensate until it finally starts pumping FASTER rather than HARDER. Often this was accompanied by PVC's which felt awful. Once I found the right medications this all stopped. It was caught on my implanted loop recorder, which recorded every heart beat for 3 years, and it was all harmless. I know that we feel our hearts beat more than others ( this is called cardiac awareness ) and that it can be quite unsettling but it is a common symptom of POTS. Since you had your heart checked out thoroughly and have been told by several doctors that nothing is of concern I think you should be OK. I had to get used to the feeling and once you know that it is not serious you might be less worried. However - medications like beta-blockers and calcium channel blockers have helped me to stop these symptoms.

@Derek1987 - I get what you are saying and I am not at all offended, but I thank you for apologizing to anyone who feels differently. My husband is a totally logic person ( engineer ) and I am a completely emotional person ( nurse ). We truly look very differently at most things but that is actually a good thing. He is good at what I struggle with nd vice-versa. And yes - often he does not listen to me but here is one cause of this: most men can focus on one thing at a time, so if he is doing something and I tell him about something it would take him great effort to shift gears. I could see that POTS would make this worse!!! I used to be the multi-tasker of the family, handling everything from job, household, shopping etc. Since POTS this has all changed - I am no longer working, barely keep up with the housework and cannot shop or transport my daughter or attend school functions. He does all of that. In your case your wife is also disabled and you must feel strongly about having these limits yourself. My husband is the backbone of our family now and I am so thankful that he is logical and what many call "a typical male" - so I can contribute in ways that are easier for me ( I am the mother/ nurse/ scheduler/ chef/ domestic specialist and general overseer ). He pretty much does everything else. Yes - if he had my brain fog it would be really, really bad!!!!!

Dear @MeganMN - I sympathize with your situation. I just had a CT of my lungs last week and they found a nodule in my pleura that - although very small - is highly suspicious for cancer. Worse yet - this type of nodule often is not the main cancer, so it could be that there is cancer somewhere else. For now I am to wait 6 months for another CT scan to see if - and how much - it grew. And today they will do some labs to check for tumor markers etc, I believe. So - yes, I totally get why you would be anxious!!! Who wouldn't be? The trick is to learn to control these feelings. First of all: think rational. They have not yet identified if you actually have Cancer. And keep reminding yourself that IF you have it there are so many excellent treatments out there today, cancer care is so advanced these days. Especially in early stages. Second: one step at a time. I have decided that instead of worrying for 6 months I am going to just go on as always, no one knows anything yet. This is the case for you as well. @JimL is right - anxiety IS about the unknown and the future. There is nothing we can do about what will happen - but we CAN create our present. Think positive: you have so much good in your life TODAY, despite the challenges. I personally am more excited about starting to dig and plant in my garden ( ordered new plants, coming soon!!! ) then I am worried about that lump. -- Third: when you first joined the forum you had so many questions and uncertainties about your POTS symptoms. As your doctors are digging deeper you have found some clues that might be helpful in finding a cure!!! Imagine if they find something that could be surgically removed and stops some - or all???? - of your symptoms? I know - this sounds farfetched but isn't the worst case scenario - the one that you are so afraid of - also just a theory? And finally: when you DO get overwhelmed with anxiety ( I have found myself in this position often over the years ) sit back, take a deep breath in and exhale slowly through your mouth. When I do this I imagine that the fear and negativity leaves me with every exhale, It works, try it. And then, once you calm down a bit, start thinking rational again and then think positive. When I get to the point where I have to physically have to calm myself down like that and succeed I usually reward myself with something, anything. Instead of doing a chore I will do something that I enjoy, just for me. The heck with worries and anxiety - I don't need it! I'm gonna enjoy my present, not fear the future that I can't even foresee yet!!! I also agree with @jklass44 - it is very important and helpful to talk about your feelings or they can overwhelm you. So - you are on the right track!!! Be well - I am praying for you!!!!!

@gossamer4448 this is a symptom of POTS that is common and - in my case - is one of the worst symptoms, other than fatigue. I used to not be able to remember things from one minute to the other. I would be cooking something on the stove, the phone rings, I answer it and then think that I was folding clothes prior to the call. So off I go to do that - meanwhile the pot is happily burning on the stove. I would start making coffee at 5 pm because I thought it was 5 am. So on and so on … what helped me was stop working, getting my heart symptoms under control with medication, living within my limitations and starting Ritalin. This is a MAJOR help to me, for both brain fog as well as fatigue.

@Derek1987 - I am not sure if this is what you are referring to but I often get burny, heavy, almost "tired" legs when I am too active. That is usually my clue to stop.

Same here - I passed out on TTT after nitro but can tolerate it well when not upright. I used to be on nitro patch for angina but no longer need it. If I had to take the sublingual pill for acute chest pain I just had to lie down with it. Nitro is extremely short lived, I don't think you would have to worry about the dose they give during the test since you will be lying down. Just make sure to get up slow and sit for few seconds before getting off the table!!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956655/ Dear @bombsh3ll - this article describes a bit more in detail why the use of SSRI and SNRI is helpful in the treatment of POTS. They are not actually used as "psychiatric" medications but rather because of their ability to regulate neurotransmitters. I myself have taken Lexapro for years for POTS and my sister has greatly benefitted from Buproprion for the treatment of her POTS. It has proven to be helpful for many people suffering from dysautonomia. Here is another, more simple, explanation from standinguptopots: Quote: Antidepressant medications: Bupropion (Wellbutrin), Paroxetine (Paxil), or Sertraline (Zoloft) These medications can help people with POTS who are prone to fainting by raising the blood pressure and modifying the brain’s response to low blood pressure signals. They are also beneficial to those who have depression or anxiety issues. ( end quote ). Many people feel uncomfortable taking psychoactive medications due to others labeling them as "crazy" if they take them. However - in the treatment of POTS the use of SSRI/SNRI is due to the influence they have on neurotransmitters causing dysautonomic symptoms and there have been many studies conducted to prove their effectiveness for the treatment of POTS.

Dear @Shepard1 - this sounds absolutely awful, I am so sorry you have to go through this!!!!!