Pistol

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! 🥰

@KiminOrlando - our local allergist checks for food allergies only with blood tests, she claims every other form o testing is inaccurate.

No - the cortisone in eyedrops does not go into your blood stream. That differs from person to person. Some people take a few days to bounce back and for others it can be weeks. It also depends on what causes the flare, whether it is something mild - such as barometric pressure changes - or something more severe, like pregnancy or viral illness. It is pretty standard for POTS to have good days and bad days, though.

@Fawnvet - here is the link to an article written about the use of Ritalin for treatment pf POTS: https://www.heartrhythmalliance.org/files/files/stars/For Clinicians/Methylphenidate POTS.pdf#:~:text=Methylphenidate has been shown to be an effective,postural orthostatic tachycardia (POTS) has not been reported. Maybe your doc will order it for you once he reads it.

To all who wonder what a completely chaotic ANS looks like - here is the picture: I recently had to go on Prednisone for arthritic flare, despite having been warned by my autonomic specialist not to ever take steroids due to HPOTS. Weaning off and then stopping caused total chaos in my ( otherwise relative stabilized ) dysautonomia. It started with a headache which progressed to confusion and passing out. Next morning HR 130 when standing up, feet ice cold and completely numb, chest pain radiating into neck, shortness of breath ( all caused by increased sympathetic tone causing vasospasms ). All these symptoms improved a bit once lying down, except icy feet. I have a history of taking autonomic seizures when in this hyperadrenergic state. My homecare nurse ( who manages my port for IV fluids ) came and accessed my port and after just 10 minutes of rapid IV fluids everything relaxed - feet turned from white and cold to warm, chest pain and shortness of breath lessened, skin color changed from gray to pink and I was able to have a coherent conversation. ( I wish I had filmed this response to show any docs who refuse IV fluids for POTS patients! )This continued for most of the day until evening. Then it all started again except this time I would get the vasospasms ( extremely constricted blood vessels ) followed by the ANS overcompensating and relaxing all vessels - which caused a sudden drop in BP leading to frequent fainting. I went back and forth from one extreme to the other. I can honestly say that it was one of the scariest states I have ever found myself in!🥴😵😳🥵🥶 Needless to say - this unfortunate state landed me in the hospital and eventually I improved, after taking Imdur - a medicine that stops vasospasms - , filling my tank with IV fluids, bedrest and restarting the Prednisone to taper off more slowly. Although I have had POTS for over 10 years and am used to just about anything - this was the worst ever. I hope my experience ( and what stopped it ) can help anyone who finds themselves in this scary state.

@MTRJ75 - laughter is a powerful medicine! It releases "good" hormones and helps with oxygenation, it also causes vasodilation. A good relaxer!!! So: 🤣😂😄

@MTRJ75 - well, anxiety CAN be handled without meds; counseling and therapy can totally help with that. Breathing techniques have long been proven to help overcome anxiety and even panic. However - anxiety can have completely different causes. It can be result of thoughts or feelings - but it also can be caused by a physiological reason, such as neurotransmitter imbalance ( hence SSRI's etc ). So it depends on the type of anxiety you suffer from if a retraining program would help. A neuro-psychologist who did an evaluation on me once explained that in POTS our PHYSICAL symptoms mimic anxiety - but also TRIGGER anxiety. So in POTS often anxiety is not the cause but a symptom. Therefore reprogramming may not help - but relaxation techniques have helped me to overcome adrenaline surges without having seizures, as long as I do them immediately upon onset of event. I am glad you started this post - no doubt there are many opinions and even experiences out here regarding this.

@MTRJ75 - CONTROLLING the ANS is a pretty big goal! Many have tried and failed ... 😒 There is a concept called Limbic Reconditioning that is supposed to retrain the brain. It is one of those things where you have to buy the book in order to find out what it does ( tells you something right there ). Since I live in a completely cell phone free zone in the mountains we get many people from all over the US claiming to be sensitive to electro-magnetic waves from cell towers and powerlines, fluorescent lights etc. They move here with the book in hand but I never see anyone being cured... Retraining the ANS in dysautonomia may be too big a feat to take on - ? Since it is the AUTONOMIC Nervous system you may have less control over it than you wish. However - I have learned in my own life that the attitude towards our illness can give us back a great deal of power over our body. Simply realizing that I cannot change things, that i have to accept my limitations and then finding a way to live DESPITE of POTS has given me back a degree of power to live with POTS. Maybe that can be considered a type of retrainnig as well??????

@Clueingforlooks - it sounds like you might be in a full-on flare. It looks the same for me: extreme fatigue and low energy, Reflux and constant nausea, diarrhea, weakness, orthostatic intolerance, shortness of breath, brain fog and other cognitive issues .... unfortunately rest and avoidance of overstimulation is necessary to get over it, and patience. In my case the only thing that brings me right back are IV fluids - foolproof instant fix. For the GI issues: when I was at my worst my GI put me on GI cocktail. It's a mix of Mylanta, viscous lidocaine and Phenobarbital ( or Donnatal ) that calmed the GI tract down really well for me. Once the Flare was over my GI system went back to normal every time.