Pistol

@toomanyproblems - that is something the specialists are working hard on, I am sure. For the past 25 years they have been putting the pieces together, observing, listening, trying. And with the research they have been doing and the treatments they HAVE found things are looking less grim, and there are more and more physicians open to acknowledging POTS. However - I do not believe we are anywhere near being able to pinpoint a way to overcome the dysfunction, or to be able to control the uncontrollable. Personally I put treating the symptoms before finding the cause - simply because we need to feel better NOW! Dr Grubb gave hope to new findings possibly leading to ( one ) cause of dysautonomia in his talk at the DI conference in October - it is that they found evidence that autoinflammation plays a role in it. Hopefully this will lead to more effective and reliable treatments. .

Yes, this is to be expected. IV fluids are not a cure but rather a treatment, therefore it is not a once-and-done treatment. In order for IV fluids to be effective they have to be given periodically (at least ), as needed or regularly scheduled. I tried all of these and only weekly and more if needed does the trick for me. Even LR only stays in the system for so long, just like any other medication ( BTW, IV fluid are considered medications ).

@MTRJ75 - here is what happened to me: when I was at my worst with POTS symptoms and lost my job I became very depressed and could not function at all. Every day was a chaotic up and down ( literally 🤣 ) of passing out or having seizures when I did anything or being confined to bed. I truly felt like giving up. Once we found proper medications and treatment for most of my symptoms I could work on accepting the reality of my condition and eventually I was able to climb out of that dark hole and shake the dust of. Today I am in a much better place ( although nowhere near being cured ). So - you could argue that the fact that I overcame my depression improved my symptoms - but I know that for me I became a happier person once my symptoms were under control. Of course there are different severities of dysautonomia, and Many improve for good or for periods of time. And I would also agree with the point you made above: people with less severe symptoms are ABLE TO HAVE GOOD MOMENTS, therefore it is possible that they have - or had - a less symptomatic type of POTS. I know of many people who experience only short bouts of symptoms and function relatively normal in between flares, and Others who are sick for a year or two and then recover almost completely. So in these instances one could argue that with less severe symptoms and a good prognosis the quality of life is such that positivity and happiness can still be found every day.

We are all highly medication-sensitive and any med that interrupts the faulty mechanism can potentially trigger another one - hence the known frustration with trying to treat dysautonomia. And often it is not simply ONE med that makes a difference but rather a combination of them. I used to do the same frequently, and in the long run trying to power through and ignoring my limits caused POTS to get much more severe for me. Even after becoming fully disabled I still overdid it frequently, simply by thinking "I just want to finish this one thing ..." and then woke up on the floor. What I have learned is to completely avoid doing things when I want to do them but rather planning my day around them. For example: If I know I have to do a taxing chore ( like mopping the floor or going to a doctors visit ) then I hydrate and rest the day before and avoid any triggers. Then the day that I want to do the chore I start early ( mornings are my best times but others do better in the afternoon ) and do only what I can and rest as soon as I feel ANY symptom coming on, be that palpitations, chest pain, weakness etc. I have found that lying is much better than sitting in order to calm the symptoms, so I lie down for a while, until I feel good enough to do some more. The secret, my friend, is that we MUST listen to our bodies, and not fight them. The only way I have found to be able to function despite POTS is by being in tune with my symptoms and react to them as soon as they start. Using willpower or trying to tell my brain what to do has not ever been effective for me - to the contrary: trying to control my symptoms has made me worse.

@MTRJ75 @shoshan - as per DI the links will be sent to registered guests by the end of this month.

@Viktor - methyldopa is not a beta blocker at all. Here is an article that lists non-cardioselective beta blockers and their action: httml://www.drugs.com/drug-class/non-cardioselective-beta-blockers.html

Unfortunately the answer is : you simply can't. If we could than POTS etc would not even be an issue - we simply would go to a psychologist or learn stress relief strategies and be on our merry way. Our symptoms are not under our control - that is why they call it the AUTONOMIC NS. The trick to overcoming this is to counteract the faulty chainreaction somewhere - and this is most commonly done with medication. For example: if you suffer from vasodilation then a med to dilate your vessels can help. Vice versa if your body responds with vasoconstriction. If you have brainfog or fatigue Modafinil can help, for cognitive issues Stimulants may help. If you have too much circulating adrenaline you can try to avoid triggers all day long - you won't be able to stop it from happening. So that is when you address each symptoms and try to treat it with meds to prevent the faulty mechanism to start. With me this is accomplished with both meds and - most importantly - regular IV fluids. This has helped me so much that as long as I avoid being upright for too long and avoid other triggers I have only few symptoms. The palpitations completely stopped even before the IV fluids, simply with the combination of Beta blocker and calcium channel blocker ( a vasodilator ). It is unfortunately but the home remedy for POTS has yet to be discovered. It is nothing you can will away or control with your mind. I see one of the most renowned autonomic specialists in the world and even he had to experiment for years to find the right treatment for me, so IMO seeing an experienced specialist and being patient with trying new meds is crucial if you want to find proper treatment. I had to kiss a lot of frogs before I found my prince!

This is a very complicated subject. From what has been explained to me is that inappropriate vasodilation OR vasoconstriction is a response by the disordered ANS and can lead to elevated adrenaline ( norepinephrine ) if the sympathetic NS overcompensates for the changes. That means we can develop many symptoms of the Fight-or-Flight response, including the typical PVC's and tachycardia. Anxiety ( or excitement ) are part of this, however since we often feel out-of-control during these episodes we certainly commonly develop anxiety in response to these symptoms ( rather than as cause of the symptoms ) and this of course would increase the adrenaline level more ... As you see there is so much going on that it can be very confusing for us to exactly pinpoint what happens why, when and how. I used to get quite worked up when in a hyperadrenergic flare, but I have learned that staying calm and not get worked up over every symptom helps.

@MTRJ75@shoshanI do not believe they have been released yet. I will check with DI.

@CarolS - this is very good info. thanks! Although the article does not explain WHY this happens it does say that finger wrinkling is a sign of POTS. Very useful info!

@Sushi - I do have thoughts, although not sure if they are backed up scientifically. I do not get the Flu vaccine for a simple reason: the ( desired ) immune reaction that occurs following the Flu shot triggers my POTS symptoms. I am very sensitive to histamine and other immuno-active substances ( due to their vaso-active reaction ) and it sends me for a tailspin, at least that is how I have explained it to myself. ( I also get flares from seasonal allergies and insect bites ). However - when it some to COVID I will take the shot. Getting the Flu makes me sick and I will have to recondition afterwards, usually takes me about 4 - 5 weeks to get back to being able to exercise at all. With COVID the risk of getting severely ill is so much greater, and the resulting bedrest etc will set me back so far that I am afraid of going full blown into collapse ( with me meaning inability to get out of bed at all or I take seizures and other times faint ). Needless to say I take the risk of having a "regular" flare from the shot versus many months of h*** from COVID. I am not at all anxious about getting COVID, since where I live there are very few cases and we live very remote. But if I have the chance to be able to avoid it with a shot I will do so, it will certainly ease any concerns at all.

So, this year the nations most traditional holiday will get a make-over: no crowds, no high-risk guests, no days of Leftover feasting. But instead of mourning the loss of celebrating the way we always did we can get creative with new and memorable ways of having a feast: - have dinner at the same time as all your ( normally invited ) friends and family and set and extra place setting for the Ipad, phone or computer. This way everyone can be together over Zoom or facetime or Skype - just as lively as any other holiday! - create a "share-a-dish" chain: if aunt Betty's sweet potato pie, Mom's dressing or BFF's cranberry sauce usually get brought in by the guests - just organize a swap the day of: have them bring your favorite dishes in the morning and you swap one of yours in return. That way everyone can still have something from everyone! - If the kids don't have their cousins over this year and miss out on playing: since you don't have all of the mess to clean up take the time to play a game with your kids after dinner! - And in the end you can always have 3 Thanksgivings with smaller groups: have Mom and Dad over on day one, go to someone else's house day 2 and then have a leftover party over the weekend for whomever you have missed. Whatever our circumstance and however dire the situation - we can still be with those we love over this holiday. What ideas do YOU have to make this a family event?

@gnnmi - I think that since dysautonomia creates an unstable reaction to orthostasis it is possible to have different types of malfunctions. It is a chain reaction with many different intersections, therefore it is possible to experience several abnormal mechanisms. The fact that your BP dropped sounds to me closer to what happens in NCS, just not as extreme. Either way - both are dysautonomias and the treatment is similar. As an Example: sometimes I develop extreme vasodilation causing a set of symptoms and other times I have extreme vasoconstriction with another set of symptoms. Both are caused by the same trigger but the chain reaction is interrupted at a different stage, or by a different mechanism. For Example: sometimes the ANS causes vasodilation and the BP drops as a result, and other times the vasodilation triggers the dumping of adrenaline which in return constricts the vessels, causing HR and BP to go up. I think your question is best answered by your physician. It is possible to have different results with different TTT's - this was the case for me. One showed clearly NCS with resulting syncope, and the other one was positive for POTS. In your case a second TTT might be required to confirm a diagnosis. What happens when you do orthostatic Vital signs? There might be a pattern that was not caught in the TTT.

Hello @Viktor - as with any supplements and herb there is always a possibility of interactions with medications, so it is best to discuss this with your MD or pharmacist. Especially if you have dysautonomia you are at greater risk for extreme sensitivities, so I personally do not experiment with supplements unless I ran it by my Pharmacist. I also check with my Chiropractor who supplies supplements and checks with the company first before recommending anything for me.

@gnnmi - interesting question. With NOH your BP drops, and with POTS the HR increases WITHOUT a significant drop in BP. So - I am not sure! I have 2 dysautonomias - NCS and POTS. In NCS the HR goes up and then plummets, causing syncope, and in POTS the HR stays high - so 2 different mechanisms, but related. So I guess it would be possible to have both NOH and POTS. Obviously the malfunction can play itself out in different ways.

Hi @angelloz I found the following statement : A pulse pressure narrower than 20 is an indicator of poor heart function. Many people with POTS report that pulse pressure is a better indicator of how they feel than is blood pressure or even heart rate. Narrow pulse pressure can be caused by congestive heart failure, cardiac tamponade, or hypovolemic shock It is from this article: https://potsspot.wordpress.com/2015/12/11/pots-and-pulse-pressure/#:~:text=A pulse pressure narrower than 20 is an,congestive heart failure%2C cardiac tamponade%2C or hypovolemic shock. I personally experience low PP ( along with diastolic hypertension ) whenever in a flare. I feel really bad then, with chest pain, palpitations, shortness of breath and dizziness. For the past 2 years I have been getting IV fluids a few times a week and the flares as well as the BP and PP instability have greatly improved. I think the low PP has to do with abnormal vasoconstriction or dilation - this would cause the heart to pump harder and faster, therefore increasing the force with which the heart has to beat in order to provide adequate circulation. As I mentioned - IV fluids can ( and in my case do ) counteract this by providing and increase in vlume and even pressure within the blood vessels.

I think learning a new language by audio tape or learning a new instrument is easy and doable for us. I think when i get bored with my current projects I will start learning spanish or pick up my daughters Ukulele. Her boyfriend is a musician - he might be able to teach me ....

dear @CallieAndToby22 - unfortunately 4 months is a relatively short waiting period. My specialist has a 18 months waiting list for new patients! I think it is probably better to wait for Vandy - but if you find someone before that you could go there too, just don't cancel Vandy. They can do all of the testing right there and have pretty much seen it all - so you should be in good hands. Worth the wait IMO.

@HCD77 - I first became sick in 2009 and started passing out at work an everywhere with HR's in the 170's and BP's of 110/160. A TTT showed NCS - that was that. Because the docs all shrugged their heads and told me I am making things worse by taking beta blockers ( b/c it was "all in my head" ) I continued to go to work ( 12 hours shifts as a nurse ) and I made everything much worse. Soon my fainting spells turned into autonomic seizures and i would pass out sitting down, 5 cardiologists shaking their heads. I even had autonomic testing at a renowned autonomic clinic and was told that there was nothing wrong with me, to take salt tablets. When I finally got in to see my autonomic specialist he immediately conformed a diagnosis of HPOTS and started the long and frustrating process of finding the right drugs. As you see - your unfortunate story rings a bell for most of us here. Just do what you are doing: educate yourself, bring studies and articles with you to your appointments to show when they dismiss your concerns or symptoms, and WRITE EVERY symptom down, every time you feel like passing out, how long you can stand BEFORE SYMPTOMS begin ( appears to be a bit over 10 minutes for you ). That way they hardly can say you don't have dysautonomia simply because you needed 3 more beats for a "per-the-book" diagnosis. And presyncope cannot be dismissed. Don't be hopeless - most of us here were in your boat, and many still are. If a doctor dismisses you you are entitled to a second opinion - find another cardiologist and have him look at your TTT. Here is an article that proves the poinT; https://www.ahajournals.org/doi/full/10.1161/circulationaha.107.761643 Quotes: - The principal feature of POTS is orthostatic intolerance, defined as the provocation of symptoms on standing that are relieved by recumbence.1,2 Patients usually complain of palpitations, fatigue, lightheadedness, exercise intolerance, nausea, diminished concentration, tremulousness, syncope, and near syncope.3 POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing - It should also be remembered that other orthostatic intolerance syndromes exist in addition to POTS, in which symptoms occur in the absence of dramatic heart rate increases.6,7 - POTS patients have been reported to suffer from a degree of functional impairment similar to that seen in conditions such as chronic obstructive pulmonary disease and congestive heart failure, yet these patients are all-too-frequently misdiagnosed as having severe anxiety or panic disorder.4,5

@Knellie - I feel you! When I first got sick it took 8 years for me to even feel interested in anything! But now I found my niche: all year I have been making Christmas presents: home made jewelry from discount beads and other supplies ( I saw a huge sale online and bought a lot of great beads and just started to do it and quickly fell in love with it, it's addicting like a puzzle !) I also have been knitting presents: scarfs. pillows, sweaters, place mats ... it is easy to learn how and keeps you occupied while creating something! If you have a hard time reading, like many here do, audio books are great. It's much less triggering than music and you get to be at the edge of your seat while lying down ... 😂 Another thing I find fun to do is candle making - but It takes being by a stove for long periods of time, so a bar stool is needed. And it is easy - you can use up old candle stumps or buy wax online ( I make my own wax ) and there are tutorials on how to pour candles. I make pillars, that is really super easy and I can personalize them by adding color or other things like herbs or other wax pieces as well as scents. Sooooo many possibilities .... you can buy supplies for any of these hobbies online and instructions as well. Another good thing about these hobbies is that you can do only as much as you can at a time. Being creative really helps your mood! And I take 'exercise breaks", meaning I get up and do a chore or so in between projects to stay active enough. On good days I use my rowing machine ( a perfect exercise for POTS, IMO ). And then there are always puzzles ....

@KiminOrlando - hmmm ... odd! I keep hearing on this forum that doctors say MCAS is very rare and they probably don;t have it. Well - if no one tests for it OF COURSE it is rare!!! RA should not disqualify you from also having MCAS. I think the doctor needs to consider the symptoms and that MCAS can often be seen alongside dysautonomia - therefore I would ask to be tested for it. I went to the Allergist and asked for testing and it was negative - but I also know that accurate testing for MCAS can be tricky. IMO I don't get why a concrete diagnosis of another condition would out you at a lesser risk for having MCAS.

I have NCS and HPOTS and I used to faint whenever I stood a few minutes, also sitting at times. I also passed out during my first TTT. Twice now you mentioned that you almost passed out after 15 minutes of standing - that sounds like your limit. I understand that you are trying to become symptomatic to find out what happens but I would avoid standing for that long. Every time you feel like that your body has already worked really hard trying to keep your blood circulating and failed, meaning you already have operated on low oxygen to the brain for a few minutes. Every time that happens to me I experience worse brain fog for days after - so it is best to try to avoid standing. I truly wish that they will reconsider your TTT results, and maybe if you go back to that cardiologist and show him the results and tell him about almost passing out he will rethink the TTT. As far as I know presyncope is a reason to follow-up with the cardiologist to make sure it is not related to an arrhythmia. That will probably steer them back to dysautonomia.

I am so sorry @MTRJ75 that you are going through this. I was the same way before I found proper treatment, and I know how scary it is. My cardiologist explained to me that the PVC's happen when the sympathetic NS kicks in too strong and dumps adrenaline. This IS the Fight-and-Flight response and a feeling of doom or extreme nervousness is a part of it, as well as anxiety over our symptoms and what they might lead to. Due to meds, IV fluids and limiting triggers I rarely experience this anymore except for in a flare, but when it hits me it still is very scary. Keep trying to find the right medication combination and know that it CAN get better!!!!!

@HCD77 - I would definitely take these readings to the specialist. Also let him/her know what your symptoms were, especially presyncope after 15 minutes of standing.

This clearly would have to be decided by a physician. Although MS and POTS share many symptoms in the early stages the progress is different in MS.