Pistol

@Caty - yes, I also have low Vit D levels since I do not tolerate heat or cold, which causes me to be homebound mostly. Supplementation has been very effective. I could not function due to fatigue, no energy, weakness etc. Once my PCP found that B12 and D levels were extremely low I have been supplementing with B12 shots and Vit D3 capsules and my levels are back to normal. Please know that as per studies it is recommended to supplement Vit D with high dose loading doses, just a regular supplement is not enough to bring the levels up. In the beginning I was prescribed 3 months of 50,000 untis Vit D weekly followed by 2000 units daily. I have been on the maintenance dose for years and my levels are normal. I would ask for a blood test of these Vitamins - also Ferritin. Several members on this forum have found to be deficient in ferritin ( which measures how our bodies store iron ). My level was extremely low and after supplementing with iron pills my levels came up from 4 to 20 ( which is till low but acceptable ).

I am sorry @gossamer4448 - what you describe is typical for POTS and it is so hard to endure. It makes it so much worse when we feel like we have to justify our limitations to others who do not understand. I was in that boat once - and still know family members that do not get it. But it helped when I shared explanations with others, for example there is a video and a book on thedysautonomiaproject.org that addresses our illness in a way that is easy to understand and explains our symptoms. This has been extremely helpful for my family to grasp POTS and that our symptoms are real. Also - please know that HERE you are understood because we all share what you are going through. And again - please see an autonomic specialist for your symptoms, with proper treatment there can be great improvement!

@Caty - I can comment on several things in your post. First of all: POTS runs in my family. Mother, 2 sisters, 3 nieces and now my 14 year old daughter all have symptoms of it, although not all of the younger ones are diagnosed ( yet ). Also - POTS and MCAS have been around forever, they just have never been named or even singled out as an abnormal condition. Many POTS patients were labeled as anxious people, persons with a weak nervous system. Labile people. Throughout history POTS had many names and many labels. It is NOT A NEW DISEASE. It is only that in the 1990's they discovered that the COMMON symptoms of POTS ( all subtypes included ) were caused by a dysfunction of the ANS. In other words: it is not the environment that is causing POTS b/c many people have been suffering from it throughout history - it is that only recently they have been giving the symptoms a name. I live in a very rural area - 90% wooded, no cell phone service ( no towers ), no high-tension-electrical lines, no highways or factories, no genetically altered plants … we live as pure as you can get. But I have had POTS since childhood, so have several of my immediate family members. It is not a new or rare condition - it is just that it has only recently been discovered that the symptoms stem from an ANS dysfunction.

Hi @MeganMN - I also was the bread-winner of the family. We - like you - live in the country, with many acres to tend to. I also have a teenage daughter. When I became ill with POTS I - after several years of fighting this reality - had to stop working due to my POTS. I also had to learn that gardening ( or any outside work ), hiking, playing with my kid, driving a car etc … ANY activity will make me worse and result in me being bedridden. And yes - I can be extremely symptomatic yet my vital signs are normal. That is one of the reasons many docs do not believe us when we explain how bad we feel - there is nothing there to prove it, or to explain it. The best advice I can give is this: do not feel like you should do more - because most likely you are already doing too much. POTS puts you into a different category of what is normal - the simplest things can be a major achievement. So please do not compare yourself to what you think you SHOULD be able to do! Listen to your body, find out what you can do and what makes you feel worse and then create a new daily routine. And even that will change every day. In my case I can do laundry, dishes on a good day, cooking ( with restrictions ) and dishes ( in spurts ). Homework and playing games with my family counts as work, since it causes me to be symptomatic. So - if I know my daughter will be home I don't do a lot of house chores so I can play with her or spend time with her. If I have the day to do what I can then I do chores ( 4 loads of laundry today ). --- I truly feel for you because I can totally imagine how hard it must be for you to try to accomplish all there is on your list. And without sounding discouraging I am telling you: it is not possible. Once you see that you will be able to get a better handle on your POTS life. BE WELL!

@gossamer4448 - I was where you are now. I felt that I was useless b/c of my inability to do anything from POTS. I felt very much depressed and could not see an end to my symptoms. But it all worked out OK. I still have POTS, I still am disabled, I still cannot do many simple things … but I AM STILL HERE! And I love my life - limitations, challenges, other peoples opinions and all. You are still young, much progress to come. Hang in there : so you are 23 and living with your parents - I am 52 and dependent on my husband and daughter to help with the most simple things. And it was a lot worse, I am LUCKY to be able to do what I can do now. There is a lot more to be found out about POTS. And - have you seen an autonomic specialist? Someone who KNOWS what we endure and what can be done about it? If you have not - please DO ask for an appointment with one. Many docs do not know how to treat POTS ( they may diagnose you but do not have any idea how to treat it ). Be positive - you may feel like the only person on the planet that has your symptoms but on this forum we are all in the same boat. And we all survive day by day. POTS is scary and disheartening - but it is not a death sentence. BE WELL!!!

Thanks @WinterSown - GREAT tip!!!!

@MeganMN - what you describe sounds like presyncope. I also used to work 12 hour shifts and passed out frequently, the dizziness and clamminess you describe sounds like what I feel like right before I pass out. In the medical community presyncope is considered the same as full syncope. Please inform your prescribing physician - he may want to change your meds.

Dear @dannyg - ANY infection can trigger or worsen POTS. Bladder infections are notoriously bad like that since they are extremely stressful on the body and often do not get detected until you had them for a while. If your white count is still considerably elevated maybe you still have an infection - have they rechecked your urine? Even if your recheck is clean - you may have another infection on top of that. -- I would check your BP often - the readings you posted are mostly elevated, In dysautonomia it is not uncommon to have fluctuating BP. --- No - I do not think the stress test would aggravate your symptoms - not any more than any other time you have to stand for 30 minutes. I would see an autonomic specialist if you continue to have symptoms ( and for most of us that often means you have to go out-of-state ). Best of luck!!!

@dannyg - there are several things you mentioned in your posts that I am confused by: why did the cardiologist stop the metoprolol if it helped your symptoms after just one dose? And why does he want to start you on a med that INCREASES your BP when you are already hypertensive? --- The TTT may shine a light on all of this. He will see what your BP does as well as your HR. My first TTT revealed NCS ( neuro-cardiogenic syncope ). My HR shot up then dropped and I fainted. BP also went up and then dropped. My second TTT revealed tachycardia and hypertension. So - depending on what the TTT shows your BP does will give the cardiologist a clue as to what your BP does when you are having symptoms, and thi in return can aide him in deciding on what med is right for you. You do not have to fant for this - many people don't - but the readings will hopefully give a conclusion to a treatment plan.

@Derek1987 - unfortunately BP measuring devices that work in the wrists are generally not reliable. There is a lot of change in pressure between your heart and your wrists, the upper arm and wrist can have great differences in readings. I was a nurse for many years and even with the BP machines in the hospitals there can be differences. In many cases the BP has to be checked manually ( the old-fashioned way ) to get accurate readings, even in hospitals. IMO manual BP is the way to go. I have used several different BP and HR devices and found them ALL to be inaccurate.

In my case I had to try many meds with varying results. Some I had to stop, some I had to increase over time. Sometimes one med would work but only for so long. Every time I would notice that my symptoms got worse again on the meds my doc would try another one. In the end I found a mix that works for me - but it took years. It was always a disappointment to me when a med stopped being effective. We just have to keep going back to the docs and let them finetune - and you are right: there is no magic cure. Our symptoms are constantly changing and our bodies always trying to adapt. Also - tachycardia is only ONE symptom - just because that is under control does not mean that the POTS is under control. Despite the meds I had to listen to my body and limit myself to my abilities ( which can change every day ). You have to find a happy medium between meds and adjusting your life. --- What I am trying to say is this: even IF your HR is controlled you will still have issues that need to be addressed. My autonomic specialist does not concentrate just on the HR, BP etc - he treats each symptoms as it coms up. Fatigue, chest pain, brain fog, adrenaline rushes are each being treated individually. So - if the Corlanor only helps with the tachycardia then the other symptoms may have to be addressed separately. Sorry - this may not be great advice but it is how my doc and I got through this frustrating journey. I wish you well!!!!

My BP is all over the place. When I am active my BP can go up to 150's over 100's. But other times it can be low - 90/50ish. Until you are properly medicated this can happen. I no longer worry about the numbers - only about how I feel, since there is no rhyme or reason to it.

@StayAtHomeMom - I am the same way - if I get to a certain point I can no longer stand still or I pass out. Walking is still bad but I tolerate it better. Yesterday I was in a grocery store with my husband. I never do the check out lane b/c it has to be empty or I go down. Well - he had to do something and I was in check-out behind a very slow person with a full cart and … well, I ended up sitting on the floor checking out the cinnamon gum on the bottom shelf as if my life depended on it. And the funny thing is that my hubby came in looking for me and could not find me b/c I was on the floor! But eventually he found me and saved the day. So - yes, I also find that standing is much worse than walking and I believe that this is due to the use of the leg muscles helps with circulation, vs standing makes everything "stand still".

@mercuryrising - it is common to have similar symptoms after a hot bath, since the hot water causes vasodilation. When you stand up after the bath your BP can drop suddenly, causing your HR to go up and the heart to pump stronger. Flushing, shortness-of-breath, dizziness and near fainting are also common symptoms. This CAN happen in normal people as well but normally improves after a minute or so. --- From what I know In POTS the HR goes up within 10 minutes and is sustained WITHOUT a drop in BP. A drop in BP followed by a temporary rise in HR is considered a normal response to orthostasis.

@ScottS - have you ever tried green tea? This contains caffeine but is much gentler on the stomach. And healthy, too!

I second what @WinterSown recommends: slow but steady is better for dysautonomia than long, hard work-outs. Of course you will feel better after such a run - but that is only to be followed by feeling worse. Shorter - and milder - exercise three times a day is probably - in my experience - much more gentle and healthy for the body than rigorous exercise.

@MeganMN - what you describe sounds like what I have when in a hyper-POTS attack. Especially the yawning and trembling. My cardiologist said that this a reaction to high adrenaline output - in my case it causes vasoconstriction which leads to low O2 levels and to compensate this the body trembles to keep us warm and we yawn to get more air in. And the feeling that your heart was beating funny is from the heart beating extra strong to pump it through the constricted blood vessels. Sorry you had this happen - I hope your husband does not feel too bad. And I hope it will not happen again!!!!

@potsiebarbie - the "wait-and-see" approach is a common treatment idea, however - if your symptoms are severe and your quality of life is diminished ( or you do not feel comfortable with the doctor ) I would totally get a second opinion. In your case the labs show that you have some abnormalities and - obviously - symptoms. So why wait-and-see?

@HangingByAThread, @p8d - I have a question: I also have hyperadrenergic POTS, but in my case I did not at all tolerate clonidine. It made me extremely sleepy and also - when after one week I stopped it - I became extremely ill at night with hypertension and anxiety like I have never experienced ( before or since ). Are these symptoms something you experienced in the beginning and they went away? A doctor told me at the time that these symptoms were temporary - so I am wondering if you had these and they improved after continuing the clonidine?

Dear @gossamer4448 - never feel sorry for posting, that is what this forum is all about! -- Yes, you definitely should get up frequently. When I am bed bound I have exercises that I do and have found that especially core exercises are very helpful. Try this one: lie on your back, lift your head and try to push your entire spine into the floor or mattress. You will immediately feel your core muscles hurting. Hold this position for a few seconds, then relax and repeat. In the beginning I could only do 3 repititions for 3 seconds each but it gets easier every time. Also attempt "biking" in bed. But it is essential that you also are upright as often as you can - sitting up and walking around, even if it just to the bathroom. You should try to get up every hour if you can. What I have also found helpful is to step out into the fresh air every day, even if you just sit outside for a few minutes. This helps with circulation, HR and BP. I know that it is so tempting to just stay in bed because being upright feels so bad - but this will make everything so much worse!! We have to fight POTS - and being active is a powerful weapon!!!

Hi @Crazycatlady - I have very bad stomach issues from POTS and I also can get very symptomatic after eating. I have not yet found any one food that does this, it appears to be more of the act of eating ( triggers ANS ). But due to my GI issues I am on a diet that is easy to digest and salads are one of the things I have to avoid. I was told that raw fruit and vegetables cause more stomach acid during digestion. I only eat cooked vegetables and do fine. - Also you mentioned medium or large salads - it could be the amount of food as well. Large meals are also a trigger, so I was told to eat 6 small meals or snacks a day and avoid large meals. And pizza is a very heavy and greasy meal, loaded with carbs which are hard to digest, therefore also cause the ANS to concentrate on supplying the digestive tract with circulation and causing POTS symptoms like tachycardia or BP changes.

Hi again @gossamer4448 - in my case my symptoms are caused by extreme vasoconstriction, which means the ANS reacts by means of sympathetic overcompensation. The sympathetic branch of the ANS is responsible for vasoconstriction and in my case it responds by tightening up the blood vessels so much that there is no adequate perfusion, almost like in the state of shock. Imagine if a hose gets kinked and the pressure builds up behind the kink but nothing comes out. The fluids - if given at a constant rate over 8 - 24 hours - create a steady pressure within the blood vessels that stops the signal of having to constrict. For example: if there is a good pressure in the garden hose than there is less of the chance for it to kink. There is also a theory that the vasoconstriction triggers the brain to think you are bleeding out, so we respond by constricting the vessels to prevent more blood loss. Creating a steady even pressure within the vascular system stops this faulty reaction b/c the brain no longer thinks that you are bleeding. --- I hope these explanations make sense to you. It is a very different way of understanding the ANS, that is why so many doctors do not understand it. Most docors think that IV saline only works by hydrating but it is obviously more complicated than that.

@mercuryrising - some of your symptoms could be from deficiencies, especially Vit D and Vit B12. These deficiencies are common in POTS and can cause POTS-like symptoms in healthy people. Ask your doc about these - they are both a simple blood test and supplementation can bring great improvement.

I am glad you are planning this for your family, I often feel why should they limit themselves because I am sick? But having said that - I would take several precautions. First of all: even if you do not normally use one - take a wheel chair! Walking, standing in line, noise, stress - this can all bring you to your knees. And I know that wheel chair people do not have to stand in line. Also - are you planning to go on any of the rides yourself? I would discourage that ( my own experience ). Then of course - hydration, hydration, hydration. And plan some rest periods - I am assuming you will not be the only adult? So - find a shady corner, use some ear plugs, close your eyes … or read … anything that feels relaxing to you. I myself - were I able to do a trip like that - would only spend a few hours in the park and then go lie down at the hotel. If you do a whole day you might not be able to do anything the next day! ---- Kudos to you that you are willing to do the trip, it will be so much fun! Enjoy your family time!!!!

@gossamer4448 - I did have times of depersonalization when I was extremely symptomatic in the beginning of this illness. I never had panic attacks per se - rather times of over-excitement during hyper-attacks. For me successful treatment was a long road of trial-and-error as well as becoming disabled. Right now I take beta blocker, calcium channel blocker, SSRI, Guanfacine ( centrally acting treating both high BP as well as cognitive issues ), Ritalin ( energy and fatigue ). I also receive weekly fluid infusions via port ( this has been the most effective treatment ). But none of these meds would be effective if I did not keep to a strict routine of rest and mild exercise. If I overdo things I still pay for it with severe POTS symptoms.