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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 ).

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. 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!!!!

@Chocolate - welcome to this forum, and thank you for your informative response. How did they diagnose your condition - what tests did they do? Was it a routine eye exam???

@Jamie S - so sorry you guys have to go through this!!! I am not sure how old your daughter is but I have a neighbor whose daughter had Lymes disease in senior high and developed POTS after it. She was limited for a year but and was not able to go to college as planned, but after taking a year off, taking it easy, starting a beta blocker and following the usual treatment of salt/water/compression she improved to where she was able to become a CNA. She now is completely symptom free, except for palpitations. The most important thing she can do for herself is the above mentioned regimen, avoiding stress and prolonged periods of standing and exercising regularly to her ability. This is VERY important, especially since she is minimally affected. 30 minutes aerobic exercise 3 times a week is recommended. Also - if she gets symptoms ( such as dizziness, palpitations, racing heart etc ) - regardless of where she is or what she is doing: she must sit down and rest to avoid a flare. In younger people post-viral dysautonomia can be overcome, however often it reappears with usual triggers such as illness, pregnancy, trauma or very stressful experiences. I am so glad you state that she can function at 85% - and I hope this will improve as well. Best wishes!!!! 😉

My sisters - who have HPOTS - have severe vision problems related to the dysautonomia. They were diagnosed with a condition that causes one eye to be directed to the side rather than focusing in the middle ( sorry, I forgot the name of this condition ). It causes symptoms as you describe, mainly difficulty focusing - trying to focus on a computer for example causes an adrenaline spike for them. They tire out easily and get overwhelmed easily by fast movement around them, too.

@leminisor - this sounds scary!!!! As far as I know this is not a symptom of POTS ( at least not a common one ). The fact that you woke up gasping for air is definitely a concerning symptom that should be brought to your physicians attention at once. What IF it is related to an allergic reaction? Please seek medical treatment right away. Good Luck!!!

@PotSdealer - I am on low dose Ritalin for POTS and never had any withdrawal when I stopped. It stays in the bloodstream for only a few hours, so unless you take it several times a day it should not be a problem. Nicotine is out of your system in 72 hours and I am not sure if marijuana causes withdrawal. But the Caffeine can definitely wreak havoc with you if you are used to a lot of it every day!!!

@Sam4877 - I agree with what @KNF recommends. This Forum is designed to share experiences and is not capable of interpreting tests. Please direct any questions to your doctor. Good luck!!!!

Dear @WinnieBlue - in POTS the criteria is a sustained increase in HR within 10 minutes of standing WITHOUT a drop in BP. If the BP drops it is considered OH. So - the doc interpreting the poor man's tilt is wrong. It does not sound like something Dysautonomia causes, ar least not the blue bruise-like mark below your pinky toe. I would definitely have that checked by your PCP.

@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. QSART and ANSAR testing do not include Neurotransmitter testing. I ASSUME that any major clinic treating dysautonomia patients should be able to do this test.

@PotsieCrocheter - if you have an Instapot it's sooo easy!!! I fill the pot with water, loads of veggies and - if on hand - chicken or beef scraps, icluding the bones. Close the lid, set to 30 minutes on high ( or the soup setting ) and voila!!!! - wonderful, delicious, healthy broth. I save all of the trimmings from veggies all week and stick them in the freezer until I need more broth. And you can add all the salt you want!!!!!

So sorry @TigerLily ! I know what you are going through, I've been there many times. Did they at least give you IV fluids in the ER? For me docs were always hesitant to give them to me with a high BP, but once I talked them into it my BP would drop as soon as the fluids ran. --- Hang in there - this too will pass. You will go back to feeling better, just please take it easy. I hope your neurologist can help. Best wishes!!!!!!

Thanks @POTSius 😙

I have HPOTS and Raynaud's syndrome https://medical-dictionary.thefreedictionary.com/Raynauds and currently am experiencing worsening of vasoconstriction in my feet triggered by a POTS flare. My feet are so bad that they are numb, and always ice cold. I have been on Diltiazem for this for ages but also added Nitro patch for this current flare. I am wearing thick socks ( despite the summer heat ), use heating pads and hot foot baths but it does not seem to be enough to keep them warmed up. Does anyone have any experience with Raynaud's during a POTS flare, or any suggestions for how to treat this?

I cannot use compression stockings because of Raynaud's syndrome in my toes. Instead I do exercises that help pump the blood back up: sit in a chair, feet flat on the floor, alternate between toes only on floor followed by heels only on floor. I do this often, and especially before and after showering. BTW - I also take lukewarm baths instead of showers when I am bad - as @RecipeForDisaster mentioned.

https://www.livestrong.com/article/260805-the-recovery-heart-rate-time-after-cardio-exercise/ Dear @MTRJ75 - In my case if I were to do what you had to I would be in bed for 5 days 😰!!! - When I exercise ( rowing machine when possible ) I do it only to the point where my HR starts to go up, then I have to stop or pay for it. Due to POTS I am horribly out of shape, but since I am on beta blockers it takes a while for my HR to really go up. I can do chores and be active around the house as long as I can have frequent rest periods, this is mostly due to if I do not stop in time my adrenaline goes through the roof. Therefore I never really go to the point of really getting my HR up. ( Not sure if this info is helpful ).

@Sam4877 - I have HPOTS and my BP and HR used to soar whenever I stood. Since I am fairly stabilized on medications, IV fluids and limitations I uphold my BP now tends to run on the low side. Currently I am in a flare and am suffering from fainting and other symptoms caused by LOW BP, and I am thinking it has to do with the heat. My autonomic specialist always told me that HPOTS can change over the years because The ANS can dysfunction in many ways, and with medications and simply age related changes in our bodies the ANS will adjust and compensate. For a while I was in a really bad boat - high BP when lying down and low BP when standing up. Today - as I said - it is the orthostatic hypotension that causes me problems ( I also have NCS ).

@Sam4877 - my BP always differs AT LEAST 10 mmHg between right and left. I was told by my PCP as well as my cardiologist that it is nothing to worry about, and I am still alive!!!!!!!

Another completely underrated treatment are a positive attitude, laughter and a supportive family. Without these I don't know if I would have survived!!!!!!

@JFreeer - I have HPOTS and neurally mediated syncope ( also called NCS - neuro-cardiogenic syncope ). My first TTT showed NCS b/c after 20 minutes my HR spiked and then plummeted, along with my BP, and I passed out. The second TTT was supposedly normal but was misinterpreted by the EP and actually showed POTS due to the elevated HR within minutes. It is very good that the compression and salt helps you so much. NCS is also a form of dysautonomia, so it is something that will be with you forever but often the treatments can control it. I find that the biggest prevention for episodes of fainting ( or almost fainting ) is the avoidance of prolonged standing. After the first diagnosis I was started on Metoprolol but it did not help at all, possibly due to the fact that I have POTS as well. But starting a Beta blocker may be something your EP is considering, and if so it is a perfectly acceptable treatment option.

@Teresa847

@Nin - I get this sensation when standing up too quickly. It was explained to me that it is caused by circulation changes in the inner ear and can also be accompanied by dizziness. It is caused by a sudden drop in BP.

Hi - have you tried an SSRI? They help with balancing serotonin - which in turn helps level other neurotransmitters, and is a known effective treatment in POTS. Leg raises and bringing your knees to your chest and straightening back helps me to avoid deconditioning when bedridden. Exercise while lying down is ESSENTIAL - or all of your symptoms will worsen. Even if you only do two exercises and they wear you out completely - if done every day they will help for your fatigue. It may seem like an impossible feat to you right now but trust me - they will help you feel better.

Definitely IV Fluids!!!!! And a healthy balance of rest and exercise - whatever exercise is tolerated.

@p8d and @KiminOrlando - I will ask my PCP about Plaquenil on my upcoming appointment. The only problem would be the stomach side effects - I have a lot of GI issues from HPOTS. Thanks for the suggestion! 🥰