Pistol

@Hippopotsamus - my mother has a super-drink for cold days that helps with EVERY ailment ( well, maybe for me simply b/c it's my mom's ... ) : shave a few slivers of fresh ginger, steep in hot ( just before boiling ) water, then add a squeeze of lemon and a bit of honey ... hmmmm! ( Pssst - you can also add a bit of a shot to this if you tolerate alcohol 😉 )

@MTRJ75 - sounds like allergies. My husband swore up and down for years that he had catarrh due to his constantly either running or blocked up nose. When we moved to another house the problem went away. Years later he got tested for allergies and he is allergic to molds, dust mites and tons of other house related things. Have you seen an allergist? --- Most Antihistamines are vasoconstrictors and can trigger POTS symptoms. However - allergies themselves are vasodilating, which also can cause POTS symptoms. Personally I have outdoor allergies and do reasonably well with Claritin and Benadryl. I cannot tolerate anything with ephedrine in it, so I stay away from decongestants ( sounds like with a runny nose you don't need them anyway 😁 ).

@CallieAndToby22 - I have done both - I travelled to Toledo and other times telemedicine or phone calls. Telemedicine appointments are the best that came from COVID! Good Luck with your appointment!

@CallieAndToby22 - I have seen Beverly Karabin several times, and she is wonderful. She is very smart and well experienced in anything dysautonomia related. She works closely with Dr Grubb. If you are afraid the tele appointment is too much for you I would write down any questions you have regarding your dysautonomia symptoms, so your Mom can read them to her. You are in the best of hands with her!

@Nicky - GREAT advice, thank you for sharing! I too have found all of your tips successful to avoid syncope and flares. This is soo true - and it took me years to learn this the hard way. Developing a routine is key, and hydrating before meals, keeping meals small and also eating frequent snacks between meals has been extremely helpful to me in avoiding post prandial POTS symptoms.

@Chuske - sometimes when we try new meds our system has to overcome the instability caused by the drug and causes a flare. Once the drug is stopped it takes a while to get back to our pre-rug normal. Being bedbound by a flare unfortunately is a reality for all POTS patients, and reconditioning is long, hard work and very frustrating. Just take baby steps and work on getting back SLOWLY and to your tolerance, but do a bit more every day. Hang in there!

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.

yes @angelloz - I have chest pain and shortness of breath frequently. # years ago I had a heart cath for this and they found out I have Prinzmetal angina - the coronary blood vessels spasm and constrict, causing the symptoms. I am on a calcium channel blocker for it ( also on beta blocker and other POTS meds ), and the calcium channel blocker seems to help. I too have been to ER often for the chest pain and shortness of breath with pain radiating up my neck and down my arm. I also take nitroglycerin pills for the pain, they help temporarily but make me faint. Chest pain and shortness of breath are quite common in POTS, usually caused by altered circulation to heart and lungs. But we should always check into ER if it feels different or worse. Also - have you been checked for COVID?

@Chuske - it sounds like you are in bad flare. What you describe happens to me as well, and not only at night, when I flare. If you remain on bedrest it might get worse. I have to rest a lot but force myself to get up every 30 minutes and also do leg and abdominal strengthening exercises while in bed, this helps to prevent deconditioning while bad. Eventually we get better and can start to slowly get back to normal. --- What helps me with the fat and strong heart beats ( or thumping ) is to increase my beta blocker ( Carvelidol ). Once I feel better I usually can get back down with the dosage. Also - I take seizures when I gt bad like that and they are prevented by IV fluids ( I know that you unfortunately can't get them in the UK, so try to fluid and salt load ). Hang in there, these flares are always scary and disheartenig, but they eventually always improve!!!!

@mae2480 - what were the symptoms of the medication interactions?

@Mady - I experience bouts of extreme fatigue and exhaustion at times from POTS. When it happens I stay mostly in bed but do leg and abs exercises in bed and get up at least every 30 minutes to stretch and walk a bit. I have to really push myself to do this b/c my body wants to just curl up and wait it out but I have learned the hard way that this will end up in an even longer and harder struggle to get back to normal. I also learned that going outside just for a few minutes counteracts the fatigue, especially in cold weather. If I sit on the porch for a bit and the sun and air hit my face it revives me and I feel a bit better. --- Try to avoid napping during the day to ensure a good nights rest, and eat and drink regularly. Loading up on Vitamin C can help during those times, and making sure you take enough Vitamin D. I wish you a quick recovery!

@Mady - I am glad you got the shot and the fatigue is probably from the immune involvement, which can flare POTS badly. Hang in there and remember to exercise gently, despite the fatigue, to avoid worsening orthostatic intolerance. I know this is hard but do it anyway! Best wishes! 🧡

@Sarah Tee - I can pretty much predict the outcome of your experiment: spending a day in bed definitely minimizes the symptoms, since they are of orthostatic nature. However - the next day you will be much more symptomatic due to the inactivity and spending the day in a supine position. That is why it is recommended to get up several times an hour and do exercises when bedridden. Most of us have to spend days in bed during a flare b/c we cannot get up ( in my case not without passing out ) and recovering from the time spent in bed takes a lot of effort and patience. Good Luck!!! When bedridden I usually spend a lot of time feeling sorry for myself. If I can I read a bit or knit or watch TV, but most of the time I just lie there, not able to do too much, just waiting for the flare to be over. what little energy I have I spend on exercises in bed or trying to be upright as much as possible.

@Dawn knight - welcome to this forum! -- As to your question: yes, spending a lot of time in bed can cause deconditioning, which shares similar symptoms as POTS. Due to lying down so much your body needs to relearn how to adjust to being upright. POTS or not - the recommended treatment for this is slow reconditioning. This is often obtained by doing leg and core strengthening exercises while lying down and getting up slowly from a sitting position to standing several times an hour, increasing the time standing by seconds every time. Once you can stand for a bit you can do orthostatic tolerance training: stand with your back leaning against a wall, feet in front of you and aligned with your hips ( about 1 1/2 feet apart on average ). Slowly slide down the wall until squatting, remain in this position for a few seconds and slide back up. Remain standing a few seconds and slide back down and repeat. Sometimes the dizziness upon standing can be caused by a sudden drop in BP, so it is important to measure your BP when you get symptomatic. In general, for the symptoms you describe increasing water and salt intake is often recommended. But with your history of SVT I would definitely see the cardiologist.

Hello @Alicat_326 - welcome to this forum! --- The above mentioned statement is actually a sign that the doctor does not understand POTS. In POTS the HR increases at least 30 BPM within the first 10 minutes of standing WITHOUT a drop in BP. If the BP drops it is called orthostatic hypotension - also a dysautonomia but not POTS. An increase in HR in response to a drop in BP is normal. I agree with what @somewhere over the rainbow has said. All of your symptoms and the fact that they started following a viral infection does sound like POTS. Salt and water increase and wearing compression garments are the proper treatments for POTS, and yes - often a beta blocker is the first med they prescribe. Here is a statement from the DI website regarding how much salt to take in: Increase Fluid and Salt IntakeIt is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension.2 Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day.3 Note that salt includes sodium and chloride. One gram of table salt contains approximately .393 grams (393 milligrams) of sodium. That means that five grams of salt contains approximately 1.965 grams (1965 milligrams) of sodium. This number can be useful when tracking salt in food with nutrition labels, which often list sodium content. I would see another doc for a second opinion and proper testing. It is correct - if done right a poor man's tilt table test can be enough to diagnose POTS, but it has to be interpreted correctly. Having said that - you are very lucky to have found an urgent care physician that actually knows about POTS!

Hello @leehart - welcome to this forum!!! --- It is difficult to say if your symptoms are POTS or not. In POTS usually the HR goes up at least 30 BPM within 10 minutes of standing and STAYS there. If it goes back down within 10 minutes it may not be POTS. A lot also depends on the symptoms you have when your HR goes up. Most people with orthostatic intolerance develop symptoms such as dizziness, chest pain, tremors, nervousness, lightheadedness etc within a few minutes - or less - of being upright, in addition to the increase in HR. It would be very helpful for the cardiologist of you could keep a diary of your symptoms while your HR is elevated, as well as BP measuring when it occurs. Sometimes the HR goes up in response to a drop in BP, so usually the doc needs to see both readings. If you have symptoms as well as an increase in HR your doctor may want to order a Tilt Table Test ( TTT ), that is how POTS is usually diagnosed. That is a good question to ask. If your increase in HR is related to an arrhythmia ( the rhythm in POTS is sinustachycardia - simply a normal heartbeat that is too fast ) then you may not want to do exercise as normal. To determine if an arrhythmia is the case your doctor may order a halter monitor, just to be sure. Surgery can cause the body to need time to adjust, and if you had to spend a bit of time in bed following the surgery it could just be from deconditioning, but POTS often gets triggered by surgery. Definitely important to see the cardiologist. In the mean time increasing water and salt and wearing compression hose are the basic self treatments for POTS. I hope this helps you to come up with some questions for the doc. Let us know what he/she thinks!

@KiminOrlando - yes, I was diagnosed with Barrett's in the beginning of my POTS journey. I had severe Reflux and the EGD showed Barrett's and duodenitis. They put me on Protonix twice a day, Carafate ( coats the stomach ) and the most effective was a combination of Mylanta, Phenobarbital and viscous Lidocaine ( called GI cocktail and needs to be mixed by pharmacy ). They also briefly put me on Reglan but only for a few weeks b/c it has severe permanent side effects. I took these meds for a year and my next EGD had no Barrett's or inflammation. My father died of esophageal cancer, so the Barrett's diagnosis was quite concerning. In addition to the meds I also changed my eating habits and diet: 6-8 small snacks a day instead of 3 large meals, avoid acidic foods, only cooked or steamed veggies. With this diet I have been able to avoid abnormal EGD's since ( I get checked every 2 years. )

@RecipeForDisaster - I have nothing valuable to share regarding your added problems but to let you know how sorry I am that you are now dealing with such pain, on top of your already hard to bear dysautonomia. I so hope the neurologist will be able to help you. Hopefully it's "just" shingles ... I have several family members that struggled with ongoing nerve pain after a shingle infection and I know how unbearable it can be. Best wishes to you, and a hopefully fast recovery!!!!!!!

@tor - it is like that for most of us. However - you do not have to give it up completely. I have learned that all activities ( even the ones we enjoy ) rob us of energy, whihc then will lead to us feeling drained afterwards. So I sped my days according to the energy I have and how I should household it. So if you want to exercise you might want to give up something else, maybe making phone calls or playing guitar. And if you want to play the guitar then something else has to give ( I like to skip washing the dishes, but I don't always get away with it 😉). And sometimes I just go with the flow and do whatever I can when I can and then stop doing anything once i am spent. But learning how to household your energy takes a while to learn, so just simply go by what your body tells you. If you start to feel tired or spent then stop - do not push yourself. This will without fail make your symptoms worse. I pushed myself to the extreme b/c I lived in denial and this made my POTS a lot worse. Now I am disabled and have the luxury to only do what I can when I can, and I can even stay in bed on really bad days. Having the freedom to listen to my body like that has made me a lot more stable. One word of caution: you will become quite unreliable if you listen to your body. For many of us that have dysautonomia planning anything is difficult b/c we can never be sure if last minute we will be able to go to that appointment or if we have the energy or are too sick to attend that event ... and sometimes we arrive somewhere and have to leave right away. This is a sad and frustrating reality of having to live with our limitations.

@tor - when re-reading your post I noticed that you mention this. In dysautonomia - especially when suffering from fatigue and exercise intolerance - it is important to balance rest and activity. If the exercise causes your symptoms to worsen it is probably too much exercise or the wrong type of exercise. Although targeted exercise is essential in dysautonomia overdoing it will make it worse. We need to listen to our bodies and plan our activity around our tolerance. In general it is not good to spend long spans sitting being inactive and then exercising a lot all at once. This can contribute to the fatigue. In general it is better to get up several times throughout the day and then exercise up to 30 minutes three times a week ( mild aerobic exercise ). If before onset of your symptoms you exercised certain times a day it may be different for you now. We do better when exercise is preceeded and followed by rest, and the exercises should be timed to NOT cause symptoms. In other words: if you can use your bike for 10 minutes and then it gets too much you might want to only exercise for 8 minutes and stop, to avoid intolerance. Then you can SLOWLY increase to tolerance. Using a stationary bike is often a recommended exercise for dysautonomia but you may not be able to do as much as before. Also - surgery ( as your bladder surgery ) can often cause dysautonomia, especially of the surgery caused prolonged inactivity in the recovery period. You may need to be more gentle and patient with your body!

@andybonse do you mean your BP is this high on Fludrocortisone? I am surprised they give this med to someone with high BP. It is meant to constrict vessels - and the high BP is usually caused by excessive vasoconstriction. A BP of 130/80 - 150/90 is not well controlled! What do you mean when you say your BP is high on standing but not hyperadrenergic? An increase in BP upon standing is highly suggestive of HPOTS! @Goldfinch - an increase of BP upon standing is highly suggestive of HPOTS. I have it and for me both HR and BP go up upon standing. Did you have a TTT? If your GP simply took Vitals in the office upon standing it is important that they be taken at 1, 3, 5 and 10 minute intervals when standing. Often in POTS the HR does fluctuate within the first 10 minutes and stabilizes within 10 minutes. That is why possibly your HR did not increase to 30 BPM. What antihypertensive do you take if you don;t mind me asking?

@Elizaangelica - you have the right idea. In POTS our blood vessels do not constrict properly - either by dilating too much or constricting too much. To ensure proper circulation of the heart and brain the ANS dumps out adrenaline, which is supposed to constrict vessels and also causes tachycardia, to pump more blood. Unfortunately too much adrenaline causes the Fight-and-Flight reflex - designed to keep us ready to react to a threat and act quickly. The symptoms are essentially what happens in an anxiety attack. Here is an article explaining this: How the Fight-or-Flight Response Works (verywellmind.com) So your explanation stated above is right. To an outsider a fight-and-flight response can easily seem like an anxiety attack, especially since they cannot see the trigger. If you turn pale, start to tremble, have a fast HR etc when you encounter a bear in front of you everyone would understand your physical reaction. But if it happens simply in response to standing up, getting startled by a ringing phone or by doing the dishes people cannot see the trigger and therefore cannot understand why it happens. Also - keep in mind that our symptoms are very scary, so it is no wonder we develop anxiety over them. I used to be very afraid of passing out in public and became anxious just entering a store or doctors office, even if in a wheel chair. Becoming anxious then set off the ANS, it dumped adrenaline and .... so you can see how the two are related. However - in true anxiety the trigger is psychological, and the physical symptoms follow. Whereas in POTS the physical symptoms come first and trigger the anxiety.

Hello @Sarah Tee - here is an article on this: Physical countermeasures to increase orthostatic tolerance - Wieling - 2015 - Journal of Internal Medicine - Wiley Online Library I suffer from NCS as well as HPOTS and am severely intolerant to being upright. I used to pass out several times a day and have found the following measures helpful: - I always cross my legs, even lying down. It is an automatic reflex for me. - when I start to feel lightheaded and cannot sit I squat. This helps to prevent fainting - but as soon as I stand up I may faint. I squat until someone gets a wheel chair. - When I am recovering from being bedridden during a flare I do the following exercise to regain tolerance: stand with your back leaning against a wall, feet firm on the ground and spread apart to line up with hip bones. Slowly slide your back down the wall until you squat, hold this pose a few seconds and slide back up. Stand for a few seconds and repeat. The standing interval needs to get longer each time before you slide down. I do this for a few minutes or as tolerated, until I can stand alone. - stand at a counter holding on, stand on tippy-toes and switch to standing on heels. Do this several times - it gets the circulation going and helps with pooling.

@tor - there are different types of dysautonomia and the symptoms you describe could be caused by some form of dysautonomia. Many dysautonomias have worse symptoms when standing up - orthostatic hypotension causes a drop in BP and POTS an increase in HR, all upon standing. That is why a Tilt table test ( TTT ) often is used to diagnose it. As @dancer65 mentioned - it is helpful for the doctors to know what triggers your symptoms, if standing up makes it worse, I can understand how stressed and anxious this all must be for you. I hope the autonomic testing will bring answers. Best of luck! This forum is a good place to ask questions and share experiences with other dysautonomia sufferers, please let us know how the testing went!

Hello @Elizaangelica! -- In simple terms: anxiety and POTS share a lot of symptoms: fast heart rate, tremors, fast breathing, sweating ... but the CAUSE is different. Anxiety often starts first and triggers the symptoms. In POTS the symptoms start first and then trigger the anxiety. Since the symptoms are so similar POTS attacks for the longest time misdiagnosed as anxiety and even panic attacks. In reality studies show that most POTS patients score low on the anxiety scale.