Pistol

Broth helps me the most as well. I load it up with extra salt.

@Cate - unfortunately I am not as familiar with Fludrocortisone, so I do not have any input to your post. But I am wondering what your physician says about these ( admittedly very uncomfortable ) side effects? Maybe he knows of something you can take instead that can help with your symptoms? Below is a list of other meds from the Cleveland clinic: Medications like salt tablets, fludrocortisone, pyridostigmine, midodrine, and or a beta blocker may be prescribed to help control POTS. I took all of these except for fludro at some point of time and tolerated them mostly well. Do you think your doctor might be open to trying any other meds? I would assume that simply stopping without introducing ( or planning to introduce ) another med is not the best thing for dysautonomia - at least it would not me for me. Whenever I found a drug I could not tolerate my docs always had another med to start while or right after stopping the drug I could not tolerate. --- Are you wearing compression hose? This might help you with your orthostatic issues while tapering. --- I also experienced flares at times when changing medications and had to stay in bed a lot ( or near it ) to avoid passing out, but I always recovered ( but I never was COMPLETELY without medication when changing meds ). Since Fludro is such a powerful drug it s no wonder that you experience full on return of your worst symptoms, but these maybe could be helped by changing to another medication such as a beta blocker? Also - when I am in a bad flare like that my docs would order IV fluids to help me over the worst times. This is a known - although disputed - treatment for POTS flares and is used commonly by my autonomic specialist during times of instability as you are experiencing. I get them weekly at home now but prior to having a port implanted I used to get them temporarily at an infusion center for acute flares ( some walk-in clinics give them too, but I guess this would not be an option during the corona virus ). This would without fail always help me through acute symptoms as you are displaying while tapering off the fludro.

I am not sure why she would recommend a rheumatologist, except if you have underlying health issues despite the POTS. In my case I saw a cardiologist first for my high BP and HR ( 4 actually before I went to the autonomic specialist that treats me now ). If your ANA, ESR, RF etc are all normal I personally would not see a rheumatologist as my first choice. I did see a rheumatologist last year for some possible anti-immune symptoms but everything checked out OK. I would probably start with the physician that has been treating you for your POTS.

@judyinthesky - if you have dysautonomia palpitations after eating are quite common. They usually are caused by the Body using all of the circulating blood volume for digestion which causes the heart to beat faster and develop extra beats. --- Dehydration can get checked in a simple blood sample, your PCP can check it for you. ---- I was always unable to keep my blood volume up despite drinking a lot and I get IV fluids 2-3 times a week, they help a lot. Oral hydration is often accomplished by drinking a lot of water PLUS increasing your salt intake. Gatorade or even Pedialyte helps some people.

So sorry @CallieAndToby22!!!!!!!! This is so many bad news wrapped in one post!!!! I wish you the very best and that you find competent and kind doctors who will help you with your health issues. Stay strong!!!!!!!!!!!!!!

Yes, I get both high and low. When stressed, overstimulated or too active I become hyPERtensive, when not active enough I am hyPOtensive. Yes - what your PCP suggests - to reduce stress - can help with the high BP, but of course that is easier said then done when you are working. ( I am disabled, so I can rest whenever needed ). It is important to check your BP frequently throughout the day to detect a pattern, which can help determine the cause of the high Bp. I would check it at least 3 times a day and whenever you feel unwell, as well when in a stressful situation. This could give clues as to when and why your BP goes up. Regarding the questions about licorice root, compression hose and high salt diet - that is something that you would need to ask your doctor. In some cases they recommend to stop high salt and high water consumption with high BP and in others cases they say you should continue. Personally I always had to drink a lot of water and increase salt intake, despite my high BP's, but this is not the case for everyone. That is a tricky thing to figure out. Being that you returned to work recently means that your body has to adjust to new requirements, and that usually negates all of the stability that you may have developed before. The fact that you are on your feet a lot more, have to deal with high-stress situations, have to ignore the alarm signals of your body and have a different rhythm all affects the way your ANS copes. A change in routine like that alone could push someone with POTS over the edge, so it would not be a surprise at all to see your BP go up. Since you have changed your daily expectations on your body you may also need different medications to help you. Flares are unpredictable but in your case I assume that it is due to your work. Can you cut down hours or days? That might help a lot.

@Nin compression stockings help by putting even pressure on the leg muscles, which supports the blood vessels. They have no room to dilate, so the blood has to go up towards the heart. And it also helps with the muscle pump - the muscles in the leg constricting and pushing the blood back up towards the heart. This all prevents pooling of the blood in the legs, which in POTS happens a lot and causes the fast HR etc - the body does not receive enough blood, so the heart pumps faster in an attempt to pump more of it. You can buy compression hose online and in medical supply stores ( like the ones that sell home medical equipment ). It is important to have exact measurements of your calf and thigh circumference and also the length of your leg to determine the right size. If you buy online they often have instructions on how to do this and then give you the size that is right for you.

@TigerLily - my best friend has asthma and develops the exact same symptoms when exposed to bleach. I may be wrong but personally I am not aware of dysautonomia causing this type of reaction from smelling a substance.

This sounds like Livedo Reticularis, or spasms of blood vessels. This is quite common in POTS - I have it too. MOST people with POTS need to avoid vasodilators, except for HPOTS patients. They can actually improve on them. Remember - there are different types of POTS and they all have different causes and therefore may require different meds. This is the reason treatment for POTS is so challenging and very individually. Here is an interpretation from my article about blood vessels that may explain it better to you: ( Quote: Vasodilation Widening of blood vessels increases blood flow, lowers blood pressure, and occurs when the smooth muscle cells within the walls relax. This can occur in response to endogenous factors such as hormones, chemicals, or nerve impulses. An increase in carbon dioxide, potassium ions, hydrogen ions, and adenosine can all lead to vasodilation. Another cause is the release of the hormone epinephrine caused by the activation of beta-2 receptors in the muscles of the blood vessels. Other causes for vasodilation are the release of nitrous oxide ( a substance released by certain nerves during inflammation ) as well as the release of histamine. (1,2) Exogenous factors that can cause vasodilation are heat, certain foods, or beverages (e.g. alcohol ) or light and noises from the environment. Pharmaceuticals can also cause vasodilation and can be used to treat certain conditions like angina or hypertension. Vasodilation can lead to hot, flushed skin by drawing circulation to the periphery and away from the core. Other symptoms include sweating, tachycardia, nausea, dizziness, vision and hearing changes, headaches, and more. (1,2) End Quote ) In many cases pooling of blood in the lower limbs is the culprit, which is a common cause of orthostatic intolerance ( difficulty being upright ) in POTS. Causes for this are varying. That is the reason why a specialist in autonomic conditions is so improtant - they understand this and know how to determine what type of POTS you have. Not every Neurologist or Cardiologist has the expertise to know this. Common state of mind for people with POTS - less blood circulating to the brain can cause brain fog. As you see - we all share many symptoms. This was always a comfort to me - to know that I am not a special case or that my condition is rare, but that many others with this disorder experience the same thing AND HAVE FOUND WAYS TO IMPROVE. Just keep looking for answers by finding competent doctors.

@TigerLily - hello, and welcome to the forum!!! I love your name, especially since I have a ton coming up in my yard currently!!! --- Yes, what you describe sounds very much typical for dysautonomia. Are you on any meds? Proper treatment can help control these issues. It sounds as though your dysautonomia is not yet controlled. In that case our bodies are in a constant state of adjusting to triggers - whether it is standing up, eating, stress, overstimulation … everything and anything can throw us off balance ( that is assuming you even ever find this place at all! ) Most physicians focus on HR and BP control first and then tackle the myriad of other symptoms. Here is a post from this website that may be helpful: What is usually recommended for the type of symptoms you describe is increased salt and fluid intake as well as compression stockings ( thigh-high or hose are recommended and fitted by a professional as in a medical equipment provider ). In your case I would ask your physician about the increase in water intake due to your underlying potassium-wasting. As to you feeling this bad every morning: many people report that drinking a glass of water right after waking up and before getting out of bed helps them, others take medication such as a beta blocker as soon as waking up. What meds - if any - have been prescribed for your condition? Finding the right medication - which is often a combination rather than just one - is critical but also a difficult and frustrating process of trial and error. A good specialist can be essential in helping you through this and I hope you have a capable and understanding physician!!! I am glad you have found this forum - there are many people on here that have went through the same thing as you and have valuable experiences to share. Be well!!!!

@Nin - hot and red rather signals WIDENING of the vessels, cold and white or blue would be more like vasoconstriction. Pooling of blood in the legs can cause this. Sometimes vasoconstriction can trigger a sudden release of the tightness in the vessels and result in this symptom. As to what medicine can help with this - that can only be determined by a physician. Everyone of us is different in both cause as well as treatment of our symptoms. Most POTS patients need to avoid vasodilators - except for certain HPOTS cases that have problems with vasoconstriction from excess norepinephrine, so it is really important that the exact cause of the seizures and other symptoms gets discovered. Yes - I used to. In the beginning of my illness I would walk down a hallway at work ( hospital ) and all of a sudden I had to hold on to the railing because it felt like a trap door opened up under me and I felt as if I was falling. Sometimes I still will suddenly loose my balance, lean to the left and even fall into walls or objects. I am not sure what causes this but I think it has to do with a sudden drop in BP, since it often happens after standing up. In my case I suffer from both high and low BP. I also experience problems with my eyes as you describe. I sometimes have difficulty focusing or my vision becomes blurry. Have you ever had a thorough neurological work-up? Despite a dysautonomia diagnosis they should rule out other conditions that can have the same symptoms. I hope you will get to consult with Dr Gupta and I hope the wait will not be too long!!! 🙃

@Nin - I too experience seizures from POTS and during the years of experimenting with meds I have found that not one med alone has helped me but rather a combination of meds. Every time I was placed on a new med I was expecting everything to just stop - but of course it did not. Only by experimenting with different drugs did I find improvement. At first we had to find the right Betablocker to control my HR and palpitations, then a calcium channel blocker to counteract the vasoconstriction causing the seizures ( by cutting off the circulation to the brain ) and then another one to lower the BP; SSRI to help normalize the neurotransmitters … And of course once the worst symptoms were under control there were still meds to be added to help with fatigue, brain fog, GI symptoms etc etc … I would not expect more than control of HR and BP from simply taking a BB. Many inexperienced physicians seem to think that if your HR and BP return to normal ranges than your symptoms will too. Unfortunately that is wishful thinking and not reality. I have heard a lot of good things about Dr Gupta from patients on this forum that have seen him. As options for autonomic specialists seem limited in the US it may be a good idea to check him out!!!! Good luck! P.S. If you look up pots videos Dr Gupta UK you will find a lot of helpful videos he made especially for POTS patients.

@Hippopotsamus thank you for sharing your story and I hope your recovery will last and speed up! What you are describing confirms my thoughts that dysautonomia does not place us in the high-risk bracket with a higher mortality rate, but it does place us at higher risk for complications in recovery due to triggering the POTS symptoms. Since you were doing so good and were able to go off your meds before the infection I am sure this is a major set-back and comes with a lot of frustrating experiences. Just remember that slow and steady is the way to go with conquering our symptoms and every minute on your feet brings you closer to being well again. Get-well wishes and keep your head up 😉🙃😘

@judyinthesky - wow, you have a lot going on, and I am so sorry you have to deal with this!!! First of all - have you ever been diagnosed with any type of dysautonomia? Here is what I noticed: - constant wired state and never tired, chronic shortened sleep with heart pounding and palpitations, nervousness after eating, phases of fatigue or depression - all these symptoms can occur in dysautonomia. - normal catecholamines, normal HR and BP .. all that does NOT sound like dysautonomia. - you have a lot going on between the thyroid and the pancreatic Insufficiency. Your poor body appears to be in chaos from the constant weight loss, potential nutritional deficiencies and the pain/ diarrhea etc from the EPI. My first clue would be any deficiencies. Vit B12 and Vit D3 deficiencies can cause some of the symptoms you are experiencing and are common in dysautonomia. At onset of my acute dysautonomia they both were extremely low and replenishing them has improved some of the fatigue, low energy, depression etc. If they were not already checked I would request a blood test for them as well as for iron/ ferritin ( which also can contribute to some of your symptoms and were low for me as well ). EPI causes the body to not brake down you food and therefore you cannot get the nutrition out of your food. Are you on ANY nutritional supplements? If you are loosing weight you may lack other nutrients as well, such as protein, certain fats etc. If your doctor has not already given you nutritional advice you could make an appointment with the dietician or nutritionist at you local hospital. They can really individualize a meal plan for you but will need the test results for deficiencies your may have. I saw one for gastroparesis and GERD as well as deficiencies and she was vey helpful and my symptoms improved greatly since following her advice. - regarding the SSRI: I am on Escitalopram ( Lexapro ) for a long time for HPOTS. Recently my specialist added Buprobion ( Wellbutrin ) and I feel soo much better! It really added a lot of spring to my step and I have a lot more energy and drive. Maybe worth asking your doc about this. - do you have any orthostatic symptoms, like dizziness or racing heart upon standing? That would be one clue regarding POTS. My thinking is that possibly with correcting any deficiencies you might feel better. Here is a link with recommendations of what you should eat with EPI https://www.everydayhealth.com/hs/exocrine-pancreatic-insufficiency-pictures/healthy-meals-to-manage-epi/ Last but not least - do you take medicine for the EPI and does it work? If not you may want to ask your doctor about a change in medication. The optimal effect of the medicine would be that your diarrhea, pain and weight loss improve. I hope there is something helpful to you in here. I truly feel for you since I know what it is like to be disabled from chronic illness. When I was unstable and had not yet found the right meds there were a few things that helped me : doing my own research, understanding my illness and symptoms, dumping doctors that were useless and sticking to the good ones. Confused or not helpful doctors will not be able to improve your condition. One clue is that they will not change medicine that is not helping as it should. Hang in there, be proactive, find other patients with EPI ( like a forum ) so you can fin out what they did to get better. Best wishes!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1😉

Allergies are back and POTS symptoms worsened. Claritin helps but does not prevent all symptoms. Definitely proof that allergies mess with us!!!!!!

@Ckitz - recently we had severe thunderstorms in my area due to rapidly changing weather ( it cycled fast between 70's and 30's, therefore the sudden and rapid changes in barometric pressure messed with my POTS ). We do not normally experience thunderstorms unless in the summer and I definitely think a state with frequent thunderstorms ( like Florida ) would mess me up.

Dear @ReginaH - I took Mestinon for a while and do not remember having any throat pain. I looked it up and this is not a side effect mentioned in the common literature about mestinon. Could you be experiencing a sore throat from allergies or cold? I would definitely ask your doc about this, especially if you are contemplating stopping the mestinon because pf this.

Dear @Ckitz - I too suffer in the summer and have to stay inside, I can't even tolerate sitting on the shady porch. But I live in a 4 season climate state and certainly can tell you that fall and spring are definitely easier on my POTS symptoms. Even very cold winters are more tolerable than a hot summer. Have you tried to use cooling vests etc for walking outside in the heat? My sister also has POTS and she uses cool cuffs around neck, ankles and wrists, she claims it makes activity in heat more tolerable.

Hello @Aaron_Arkin - even if you have different specialists ordering your various medications your PCP should have an updated list of them. You may want to direct these questions to him, or ask the doc that ordered each med. Whenever ANY doc orders a new med they look over your list of meds to see if there are any contraindications. Whenever I have a question like yours I call my pharmacist. assuming you use the same pharmacy for every prescription they have a complete list of your meds and they can look up your questions. They certainly are all valid questions and my bet would be the pharmacist as the best go-to.

@brainchild - what good news!!! I am happy to hear that you have found your "magic pill". I too found the med that helped me and am still amazed to see how wonderful it is to be able to do do certain things ( especially gardening!!! ) 🙃 I wish you a consistent improvement and thank you for sharing your good news!!!!!

@Abe - if you end up having to go in to see your doc about the fatigue: ask him to check on your vit B 12 and vit D levels. Both are known to run low in POTS, especially since during winter and now we stay in and don't get enough sunlight. I was deficient in both and after supplementation had a lot more energy.

@Abe - I am so sorry that you are struggling like that. The sudden extreme fatigue is plaguing me too at the present. It is part of a POTS flare and the only thing I can do to combat it ( except for IV fluids ) is exercise. I do a few exercises several times a day and that seems to jumpstart my BP to being at least able to function. Then, when the fatigue hits, I go to bed for 10 minutes, do exercises and am good for another round of activity. --- Feelings of panic come to me when my adrenaline surges, I am not sure if you experience the same. The current emergency certainly can make us all very anxious, so it might be due to the as well. I have a prescription for Lorazepam but I am VERY cautious in taking it. I was told that it only masks the symptoms of POTS without any real benefit and easily can lead to addiction because of that. I only take it at night sometimes for sleep. What does help greatly in those spells are deep breathing exercises. I take a slow, deep breath over about 5 seconds and then breathe out slowly through my mouth. This is a known way to calm down your ANS and it works. Do this in a quiet room for a few minutes when the anxiety gets bad. --- Can you video-conference with your doc? If your HR is elevated he may want to put you on a beta blocker. --- It is the best to stay at home and not go to the clinic at the moment. Remember - this too will pass and we will all be able to crawl out of our dens into the sunlight again. Stay healthy, think positive and find at least ONE beautiful thing in every day. I am always amazed how many wonderful things we miss by not paying attention!!! Best wishes!!!

@Nin - as you know I also take seizures caused by POTS and also have high BP from HPOTS. I have been on several BB's and they all were safe for me to take. I had no bad side effects, just some only worked for a while and then I had to switch. Now I am on Carvelidol with good effects for many years. Try the Bisoprolol- we all are different in the way we tolerate meds. In my case they all worked on lowering my HR but not the high BP.

Dear @Scout - I get these as well. I do take autonomic seizures that look like grand mal seizures, but I also have these "staring episodes" that you describe. I know that before a seizure I have this sensation of almost "being outside of my body" and I can't move and hear and see differently. People tell me that I have a blank stare and turn ashen, with blue or white lips, right before a seizure. But I have also had these spells without developing a full-fledged seizure, and those seem to last a few minutes. I was told that this is all due to a loss of circulation to the brain caused by excessive vasoconstriction. In my case this is due to a sudden and severe adrenaline dump. --- I also have vasovagal syncope in addition to HPOTS, and the syncopal episodes caused by that are completely different, with different warning signs before, and I usually only get a few seconds before going completely lights-out. I am sorry that you are dealing with this now, during such a trying time. I assume the stress and unavoidable anxiety from the current crisis will add to our symptoms and can cause a flare. Personally I would call the physician that treats your POTS and inform him/her of these events, he may suggest medications to help stabilize your ANS and help with the pre-syncopal symptoms. For me what always helps are IV fluids. I get them scheduled 3 times a week at home but used to have to go to hospital for them when the seizures and syncopal episodes became too frequent. This would ALWAYS stop them for a while. But I also realize that that may not be possible right now with the crisis. But maybe worth mentioning to your docs that it helps others with the same conditions. I am not sure if this is even accepted in your country. Scout, I wish you the best and send you strength and support in dealing with this frightening part of POTS. Just know that you are not alone and I am here if you need support or have questions. Just PM me if you need help. Be well 😉😘

Dear @KaciCrochets - I also had a catecholamine blood test do confirm my HPOTS diagnosis. My levels were elevated both resting and upright, however my specialist states that it is unusual to also have resting upright levels. The whole reason why they elevate is the act of standing up. Here are the references for catecholamines in the diagnosis for HPOTS per Mayo clinic: According to this if your levels are elevated upright you are positive for HPOTS. 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