Pistol

@MomtoGiuliana - should you not have antibodies if you had the shot? I know that in people with natural immunity they say that the antibodies last for so long and then no longer show up, however the innate immune system ( T-calls etc ) are supposed to remember how to make the antibodies if confronted with the virus. So - should it not be the same with the vaccines? Should you not be able to test if there are antibodies, and if there are not you may need the booster? I am just wondering.

Dear @TorturedSoul - here is an article about hydration and POTS Hydration is a VERY big deal in dysautonomia, and your hydration level directly affects the ANS. If you are unable to drink the recommended amount of fluids and salt I would bring this up to your physician, since not being adequately hydrated will make your symptoms worse, and can even be a cause for all of it. Yes, IME it can. Before getting regular IV fluids I fainted all of the time, felt lightheaded and short of breath and many other unpleasant symptoms. I was in the ER every several weeks, even with outpatient IV fluids inbetween visits. Like you, I am unable to tolerate drinking the required amount of fluids, so it was definitely a factor in my case. Getting regular IV fluids has greatly improved my symptoms. Yes, it can. Hot baths and showers cause your blood vessels to dilate, will in dysautonomia can trigger an abnormal ANS response, leading to the symptoms you describe. That os why we are to avoid hot water. Some people report that drinking a big glass of water before showering helps them. I only take brief, lukewarm showers and rest immediately after, that way I can avoid the symptoms you describe. I have a genetic form of HPOTS, and it runs in the last 3 generations of my family ( females, anyway ). I am the fourth person in the second generation to have POTS and I have it worse that everyone else. Some women in my family have only mild symptoms, I am disabled by it. Dysautonomia is a highly individual illness, and many factors specific to your body can influence the severity of symptoms.

@Nelson G. - the webinar is over, so we no longer can send these questions to the docs. But IMO the decision to vaccinate should be made by you and your physician, considering all of the factors that may apply to your particular diagnoses. Not even in healthy individuals can the response to any vaccine be predicted, so there is always a risk, no matter what the medication or vaccine.

@Nelson G. - that is funny, I had the same problem growing up, and still do! One of the reasons I get IV fluids every week is because I cannot keep down fluids, especially anything non-carbonated. Even a sip or two makes me nauseated and - of I continue despite the nausea - makes me throw up. As a child I was diagnosed with a psychological problem! Now, in hindsight, I realize that all of that ( plus the frequent faints that also were contributed to psychological reasons ) were due to POTS!

@My Journey - don't worry, dysautonomia is a confusing topic, and most doctors don't even understand it! You are doing the right thing - continue to research and ask as many questions as you can. This forum was very helpful and a source of great support for me when I was at my worst and knew the least. Good luck!

@sunbun- I have chronic T-wave inversion and it is no big deal. Yes, there CAN be machine errors and what is called artifact ( transmission errors ) that can look like T=wave inversion. I would follow up with your regular doctor and see what he/she says.

@MikeO - since my BP's fluctuate so badly at times I have an order for additional Carvelidol to be taken if the BP goes up. Also - if my BP consistently runs low I only take 1/2 of my Carvelidol. But THIS IS ONLY DONE WITH MY DOC'S APPROVAL. I am not suggesting that anyone should do this on their own, since messing with our dosages can easily backfire.

@My Journey - what you are describing is actually SYMPATHETIC malfunction, also called hyperadrenergic POT. It means that when triggered ( for example by a sudden drop in BP ) the NS activates the sympathetic branch, which will dump norepinephrine ( adrenaline ) which then in turn constricts the vessels and causes high BP and all of the symptoms of the Fight-and-Flight response. This is the mechanism that causes some of my symptoms. Other times the sympathetic NS FAILS to kick in and the vessels remain dilated and the BP drops, causing a completely different set of symptoms. Having both of these malfunctions is very difficult to treat with meds and I have found that lifestyle adjustments and prompt reacting to the signals of the body can help control the surges in either direction.

@MikeO - I have IBS from HPOTS and yes, it does come and go for me. Something as simple as skipping a meal, overeating or an acidic meal can set it off. I also have bad GERD in addition to the IBS. I have to follow a diet of certain foods at certain times in addition to medication in order to avoid problems. If the POTS flares usually the IBS does too.

Hello @My Journey - welcome to this forum! I am sorry you are finding yourself needing to reach out! --- I have HPOTS ( hyperadrenergic POTS ), which in my case causes the sympathetic NS to either overcompensate and severely constrict the blood vessels, or it withdraws and dilates all of the vessels. This instability causes my BP to fluctuate: when there is too much SNS activation I have high BP, adrenaline surge, cold, tremors, nervousness and may have seizures from not enough blood reaching the brain. And when there is not enough SNS activation my BP plummets, I get lightheaded and faint. I am not sure if this is what you experience ( or maybe you do just not as severely ) but I can tell you that I am familiar with sudden BP changes. And treating both high and low BP is very tricky, so you will have to be patient and willing to try different medications. Most of us have to go through several meds before we find the right one(s), and being that most of us are highly sensitive to meds it can be frustrating and discouraging. But in my case I have greatly improved and no longer faint or take seizures, and have mostly stable BP's. I can safely say that I have stabilized on my medications and treatments. But it took a long time to establish a team of good doctors. Finding a physician experienced in treating dysautonomia is very important, and many of us have to travel out of state to get the proper treatment or diagnosis. What - if anything - has your doctor prescribed for you so far?

Hello @a1parrothead - I am sorry you are going through all of this! --- First of all I would like to mention that this forum is unable to not allowed to give medical advice, so we can simply share what we know has been helpful to us or others we know. I personally have HPOTS, which can cause both high and low BP based on the blood vessels being too dilated or too constricted. I also have a type of angina caused by the coronary blood vessels getting constricted. I was on Imdur initially and my BP bottomed out, so they took me off hat and now I am on niroglycerin as needed for chest pain. I was on a nitropatch for a while but it also made my BP too low. But my case is different than your wife's because of the different mechanism behind the POTS. The best thing to do is always check with the cardiologist if you have questions or concerns. Only the physician has the information regarding her specific case and should be the one adjusting her medications. Dysautonomia complicates every other health condition, and the fact that so many doctors are not familiar with it makes this very hard for us. But the cardiologist should understand low BP while on vasodilators, so he/she should have other drugs to try if Imdur does not work for her. Just as with dysautonomia - we have to give different drugs a try to find the one that works. I hope they will find the right drug for her. Just keep her doctor informed of any negative effects, including low and symptomatic hypotension.

@CallieAndToby22 - I am so sorry you are suffering like that! Usually if there is an active infection there is evidence of that in your labwork. I have had abnormal labs for past 2 months showing an infection but they cant find it. I am in hospital now for sepsis. The only reason I am telling you this is to assure you that any infection should be noticeable in your lab work, like CBC, ESR, CRP etc. And I am sure your docs checked al that often. Also - a lumbar puncture is a risky procedure and they will only do that if there is evidence of an infection. --- I hope they will be able to help you at UAB! Hang in there!

@MikeO - yum! Is cooking just a hobby for you or are you a chef? Even the way you present your dishes is professional, and it makes me want to sit down and eat it!

Oh, how cool! Yes, Hummingbirds may look like little helpless angels but they are vicious to each other!

@MikeO - I have a pair of those living on my property. Since I was able to stand being outside this summer I spent a lot of time sitting on my porch with the binoculars watching ( and learning to identify ) birds. I found this to be a lot more interesting than I thought ( although my 17 year old daughter qualifies it as a definite "old people activity" ). Once I saw the pair climbing up a dead tree right by my house and I got a good look at them. I found that we have 3 types of wood peckers in our yard, and I identified 2 types of owls, hawks, a bald eagle, loads of song birds, 2 mocking birds, grouse, turkey and much, much more. What I also found fascinating is the nesting habits. I watched a pair of blue birds hatch their family in a hollow fence post right across from my porch, so I got to really study them. One day the hatchlings were gone ( not sure if they flew the coop or if a snake or fox got them ). The Daddy blue bird was so upset, he kept looking into the fence post and hollering loudly! This went on for days. Thanks for sharing the picture! I love it ☺️!

Hi @Knellie - IST means that your HR is too fast, and that it comes from the sinus node. The biggest difference between IST and POTS is that in POTS the HR increases when we stand up and in IST the HR is always fast. IST will cause a fats resting HR whereas in POTS the resting HR is usually normal. IST was one of the suspected causes for my fainting and tachycardia when I first became severely symptomatic with POTS 12 years ago, but it was quickly ruled out when the TTT chowed a normal resting HR and an abnormal increase upon standing.

@jillmae - it is very tough. When this happens to me ( right now I wake up every morning at 3 am and cannot go back to sleep ) I just try to avoid any stimulation during the day. That is easier said for me than most, because I am homebound and disabled from POTS, so I can stay "sheltered" in a room and avoid exercise etc when I am bad. I also avoid phone conversations etc during that time, because that is all stimulation. Eventually - for me - I go back to a healthy sleep routine. But while in a high-adrenaline surge I have to avoid all stimulation.

@Knellie - an increase of 30 BPM within the first 10 minutes of upright TTT is positive for POTS.

@MikeO as someone who also has both low and high BP's I want to make you aware that even if your BP is normal - if it drops SUDDENLY ( lets say from 130/80 to 100/60 ) you can still get the whooshing/ lightheadedness/ passing-out feeling ). So simply going by the numbers does not work, you have to go by what you FEEL when the numbers CHANGE. So be aware of that when you have your BP monitoring done. Record you SYMPTOMS - not only the numbers!

@sunbun - pulse oximeters can become loose on your finger with movement and stop detecting your HR. This will result in a brief pause. As you said - a PVC can also cause a ( normal ) skipped beat after the premature beat, which is expected. Er staff are experienced and deal with their equipment every day - I would trust that if there was something going on they would have seen it on the monitor.

@Lia - thank you for your genuine post. I am so sorry you are going through all of this, and hopefully this forum can be of help. First of all - I too had an eating disorder when I was in my teens, I was anorexic for years. Although I did go into Inpatient therapy for it at 19 and greatly improved, the dysfunction of thinking about food and abnormal eating habits ( although I was able to gain and keep weight ) continued for years. A genetic form of POTS runs in my family through 3 generations, so I always had it, but thankfully I did not become severely ill from it until I was in my early 40's, and by then I ate normally. Here is what has helped me back in my teens and early twenties to overcome my hesitancy to eat: 1) I had to relearn that food is a necessity, nothing else. So a therapist taught me nutrition ( and not counting calories or thinkin about how fat this food will make me ). Knowing what foods do in your body and why we need them was very important for my recovery. 2) Choosing and preparing foods ahead of time helped me a lot when I was in my college years. I would buy ( and sometimes prepare ) food and then have it ready in meal sized portions. Even some frozen dinners from the grocery store work, depending on what you buy they can be very nutritious. 3) I would eat food like medicine: set times I would eat, hungry or not, even if it was just a handful of nuts or a banana. If I did not want to eat I would remind myself that my body needs these calories just to be able to keep me alive ( we need at least 7-- calories to maintain our body, without gaining ). 4) Therapy. If you are still having difficulties with eating healthy it is essential that you discuss this with a therapist or counselor. There are so many thoughts and anxieties that contribute to unhealthy eating habits that we often cannot pinpoint them ourselves. Think of people who overeat because they have low self-esteeem or eat because they do not get the attention they deserve and need. In most cases a therapist can, over time, help us discover these thoughts and feelings. 5) Remember - there is no shame in feeling the way you do. Your mental health is affected by so many factors, both from the past and the present, that abnormal behavior can be like an avalanche - once it is set in motion we cannot stop it ourselves - we can only go out of the way. I hope this post is somewhat helpful. Please be gentle with yourself and take care of your body!

@MTRJ75 - unfortunately the presentations have been taped, so we will not be able to ask questions for you. But maybe I can put in my 2 cents: exercise, as with even healthy people, is important for our cardio-vascular health and without it our body will suffer in many ways. Aerobic exercise is recommended for most POTS patients ( to tolerance ) because one of the goals is to oxygenate the body. Personally I was always told to stay as active as I can ( I am extremely exercise intolerant, so for me this is mild house work and a rowing machine ). If you were able to do exercises before POTS and now can do less then do what you can, do not push yourself. Your body tells you what it needs. This subject has been often discussed in other posts, and what we have been realizing that there are two theories here on the forum: barometric pressure changes ( a known trigger for POTS because it can alter BP and blood viscosity levels as well as oxygen levels in the blood ) and histamine release. Spring and Fall are high=allergen seasons and histamine release causes vasodilation. This in turn can trigger POTS. Even if you are not even aware that you have allergies you can still have them. Both of these factors are triggers for me, especially every fall. I stay mostly indoors during those times and take claritin to avoid the allelrgy symptoms. I hope this might be helpful.

@MikeO - the period for questions for docs is over for this months webinar but you can ask any question to our advisory physician panel. This information is on the left side of our home page: If you have a question that you would like answered by our advisory team, please send it to webmaster@dinet.org Questions are posted in our quarterly newsletter. As to your worsening hot flashes: as you know thermo dysregulation is a common symptoms of dysautonomia, and I used to experience feeling hot or cold, depending on my BP and autonomic tone. When my BP dropped or ran low I would sweat and feel flushed, and when it rose I would shiver and freeze. For me it all depended on what my blood vessels were doing: dilate or constrict. Since you suffer from nOH I wonder if your imbalance could cause the hot feeling? Have you kept a diary on what your BP and HR are when you get that hot? It might give you a clue. As always - I am so sorry you have to deal with such uncomfortable symptoms every day! Hang in there!

@MikeO - this is what happens when you finally meet a health care professional who does their job the way it is supposed to be done: by listening to the PATIENT and not pick out words or symptoms they say. When you find someone who does that then they are worth sticking with. My PCP knew LESS than me about DYS when I first got sick, but he had witnessed enough of my symptoms to know that everything was real. This saved me - I has SOMEONE on my side I could fall back on when the specialists washed their hands of me.

@MikeO - I have that happen too! But I just stash that One away with the rest of my "uncomfortable but inconsequential symptoms". This happened to me during my ILR years as well and it was never anything serious, so I think it is just one of those things that I learned to live with.