PotsMom

We have heavy history of both Sjogrens and POTS in our family. I believe there is a definite autoimmune connection with the POTS and many others like yourself.

There clearly is a seeming genetic component for more than a few. My kids have both had severe POTS. My niece also clearly has dysautonomia. My Mom has had mild OI intermittently over the years as well as myself. I had an episode several years ago before the kid's severe POTS issues became apparent. My heart was racing any time I was upright and I became concerned about what the problem was. Fortunately I had no other significant symptoms. Dr waved it off to stress and gave me Xanax, which did nothing. Same dr waved my daughter off to depression when she was completely debilitated with not only the heart rate issues but the severe fatigue, hives, etc etc. The severity with the kids forced us to continue pursuit of a diagnosis. It was in retrospect that I realized my mild symptoms and likely the fainting episodes I had as a child were likely all related to the same thing and my mother's as well. The severity has been significantly different with the kids but clearly all related.

I have noticed that BP does not always correspond to what you experience physically. One thing interesting I have noticed with my son when I've occationally tried to get a bit of data is that he will drop to the floor (not loss of consciousness, just complete exhaustion and weakness) and will be very clearly completely exhausted and wiped out (from standing, for example). If I take his blood pressure immediately, it will be on the lower side for him but not significantly so at all. If I take the BP at a couple of intervals after that (two or three minutes between each), it will drop more significantly. It's interesting to me how it will be delayed like that. I've not been able to test it as closely as I'd like to do as when that happens to him he does not feel like messing with BPs as he is so completely exhausted and wiped out. The delayed effect is interesting, though. Also the drop in diastolic for him is more significant than the drop in systolic. Sometimes his heart rate will also drop below what is normal for him.

Like with everything, it depends on the individual. My daughter has tried magnesium at at least a couple of points in time with her POTS journey and has found that taking magnesium directly correlates to weakness in her legs. In doing some reading we learned that magnesium causes dilation of the blood vessels. Thus it makes sense that it can have a negative effect when pooling is an issue with POTS.

Carol, Your family history has some similarities to mine. My Mom's dad had Parkinson's and her sister we think also has Parkinson's. My Mom and each of her siblings have at least one major autoimmune disorder. My Mom has severe problems with Sjogren's as well as arthritis and fibromyalgia. Based on symptoms, my sister and I both most likely have early Sjogren's... As mentioned previously we also have other very mild dysautonomia in the family. My brother also undoubtedly has CFS (not known as yet to be autoimmune of course but with family history like ours I have to wonder...) Then there's the fact that my hubby also has autoimmune disease. Family history is a topic of great interest to me - I have long wished for some studies of dysautonomia/CFS that focus on family history. I think it would be very enlightening!

This is an interesting topic because it is one I've mulled over quite a bit. There is no doubt in my mind that my two kid's severe POTS/CFS, or however one wants to classify it, has an autoimmune basis as autoimmune conditions are absolutely rampant on the maternal side of my family. In addition to that, my Mom has also had mild signs of OI for years, I have occasional symptoms of OI and was very sickly in the preteen/early teen years and fainted several times, etc., and my sister's daughter at 13 is now beginning to have mild symptoms of OI. It is clear that there is a huge hereditary component for my kids but I have often wondered why it is that they got hit so severely. My husband's side of the family has a history of being incredibly healthy, so I had never even glanced in that direction. Then about three years ago my husband began having problems and was diagnosed with an autoimmune problem of the trachea. I have found it very interesting as I can't help but wonder if the collision of autoimmune issues from both sides of the family at least contributed to the severity of my kid's conditions. No way to know of course but definitely interesting and reading this thread makes it interesting indeed.

Puppylove, Given the fact that stress has big impacts on POTS/dysautonomia symptoms, it certainly makes sense to me that it could also be the triggering factor in someone who is already predispositioned for this condition. The age at which this occurred for you is also in a very, very typical age range for dysautonomia symptoms to begin or worsen. Your scenario of severe onset with a triggering event which was preceded by much milder symptoms over months and/or years prior to that is very typical.

While warm water has therapeutic effects for some things, it is not a friend of dysautonomia as it causes dilation of the veins. Both of my POTSy kids feel probably their best in a cool pool. However a hot tub will bring on a crash. My son loves warm water and finally gave in to the temptation to go in a hot tub again last year when at a motel. He enjoyed it so much but collapsed from exhaustion. He was lying on the cement beside the pool for a while before he could even get the energy to get up and walk shakily back to the room. Certainly everyone is different, as is clear from the many discussions in forums such as this one, but I think it's correct to say that generally speaking cooler water is better for dysautonomia patients than warm water. I do think it is vasoconstrictive effects of the water pressure that is the helpful factor but the warm water also has dilation effects according to my understanding and thus apparently overrides the good effects of the water pressure?? Seems to make sense in light of our own experience.

I have been convinced for several years that there is an autoimmune link in my two POTSy kids!!! You are soooo right, ramakentesh, I have chatted with many with POTS/CFS who have other autoimmune diseases or with relatives who do. I have always found this extremely interesting and am absolutely convinced there's a link. I have autoimmune issues myself and my husband also has an autoimmune condition. Also autoimmune conditions are rampant on the maternal side of my family - my Mom and each of her siblings have autoimmune issues and my sister and brother as well. With all of that and then both my kids with disabling POTS and at least one of them with CFS, I find it downright impossible to believe there is not a connection. Then on top of that, talking with so many others who also have autoimmune in their family. Hard to deny a connection is not there. Not to say there are not other causes as well, but no doubt in my mind that some and likely many cases have an autoimmune cause. Thanks for posting the two articles about CFS and POTS. I had not seen those.

I'm sorry, but I can't resist a comment here. It's convenient to blow off anything that they do not otherwise understand! This is such a common occurrence in all of this. Certainly there is always the possibility of an equipment malfunction, but this attitude is such a common theme, and it never ceases to amaze me! If they can't explain it, the "it can't be!" I always remember how back in the very beginning when my daughter began such disabling symptoms and we were going from physician to physician. I remember so well the moment that while we were discussing things with the physician the nurse was in the other room taking daughter's vitals, etc. She (the nurse) then came in to tell the doctor that she was getting some weird blood pressures, that the numbers were too close together. When she showed him the numbers, he immediately said, "oh something's wrong, that can't be!" and he implied that the nurse was doing something wrong when taking the BP. Later when I learned about POTS on the Internet and read about narrow pulse pressures often associated with that, I immediately remembered that day in the doctor's office and thought, yes, it can be - that's exactly what was going on with her that day! I don't know about the oxygen, but I have always been curious about oxygen levels and have thought it would be interesting to have the ability to measure that over several days like you have done. Very interesting. It's not to say it's like that for everyone and not to say you shouldn't check it out further as possibly unrelated to dysautonomia, as we always need to do as well, but I find it very interesting indeed. I would run several tests like that and then take all of the data in when you see someone. Doesn't mean they will pay any attention to it, but it's worth a try!

Tarastomsgirl, I am so sorry for all of the trouble you are having. Though I know there are likely many causes behind dysautonomia, I definitely believe autoimmune is one of the big ones. There's so much autoimmune history in my family - no doubt in my mind that that is at the bottom of cause for both of my dysautonomic kids. We can all too well understand the frustration of it all and how disabling it can be! This may not be helpful for you but thought I'd pass it on just in case it can be of any help at all. Both of my kids get a lot of canker sores, and my daughter gets them in clusters that are very, very painful. I had searched trying to find relief for her when she is going through this and in the process have learned that one thing that is a trigger for many is sodium lauryl sulfate, SLS, an ingredient in most toothpastes and is from what I understand the ingredient that causes it to foam. While that is not the only trigger for my daughter, we did find that after she switched to Squigle, one we ordered that does not include this ingredient, she had noticeable improvement in the frequency of these sores. I know that what you have is not the same as canker sores but just thought I'd pass this on in case it is something you want to try. I completely understand the desperation of trying to find small or large pieces that help with any of the myriad of symptoms that eat away at one's ability to be functional! My thoughts are with you!

My daughter was not able to tolerate Mirapex but she has found Neurontin (gabapentin) to be very helpful with this for her. It's something to ask about as an alternative if you don't have success with the Mirapex.

What an awesome idea to start this thread. With my two POTS kids we have discussed from time to time the blessings in disguise that have come our way due to POTS. With all the negatives, it definitely helps to spend some time focusing on the positives. A few of ours... * It has given my kids a wisdom beyond their years and has given us all the ability to appreciate and treasure the little things. * It has helped me be far less judgmental than I used to be. * We have two of the sweetest, lovable "pups" that we got for each of the kids when they were at POTS lows. They are a special part of our family and we can't imagine what we would do without them. * Because of this long journey that we have traveled together, I have an extra and special bond with my kids.

Susan, Like with adults, POTS/dysautonomia onset, course, severity, etc. are different from patient to patient. I have two teens - one's severe onset was after back to back viruses. In retrospect there were mild signs prior to that, but the obvious disabling symptoms were after viruses. The other's onset was gradual over time. We do not have the fainting issues so I cannot speak to that though certainly schooling / education has been impacted in a major way due to fatigue, etc. I don't know Matt's age but regardless of the type of onset, it is very common for symptoms to appear or worsen at puberty, growth spurts, etc. It seems that the standard for diagnosing is the tilt test. Holters can be helpful as well. The poor man's tilt test can be done at home and can be very telling in and of itself. I don't have a link handy, but if you do a search I am sure you can find the description of this. With both of my kids we initially did that at home, and it was very enlightening. The formal tilt confirmed what we learned from that. I would encourage utilization of that tool while waiting for other testing. If you don't find it in a search, PM me and I should be able to locate it. As to type of doctor, just like with adults, it's a matter of finding a doctor has has some knowledge and expertise with dysautonomia, and as we know that is a challenge. Sometimes it's cardiology, neurology, etc. Like adults, meds vary widely with patients, tolerance, etc. The meds used with kids tend to be the same as those used with adults and are trial and error, finding the right fit. Generally it is felt that kids have a better prognosis long-term than those who had onset as adults though again, every patient is different. From what I've read it is felt that the majority of kids will have good recovery by mid 20s. I have one at 19 who has had significant progress and one at 17 who has had little, if any, progress. Again, it's patient to patient.

PetuniasMom, Like many others, I can all too well relate to the frustrating journey with your son. I have two kids with dysautonomia and like so many it has been a long,tough journey. A common thread that probably every single dysautonomia patient shares is the frustration of finding physicians who understand dysautonmia and recognize it's existence and how deblitating it can be. This is an excellent thread with lots of great input. To add my additional two cents, I think both the gastro and cardiologist you have seen are on the right track. It sounds like they both recommend referral for autonomic testing, and that says volumes for both of them. I know you might have been a bit discouraged by the cardiologist saying he didn't feel your son needed a tilt test. However, he hit the nail on the head when he said to call it what you will but that he thinks your son has autonomic dysfunction. I personally think that's the bottom line. I know someone else here also pointed out that there are various forms of dysautonomia. That's very true, and many have more than one form. For example my kids both have manifestations of both POTS and NMH, and I well remember when she was first officially diagnosed the doctor drew a diagram that he felt she had parts of both. I think it is the recognition of the fact that there is an autonomic dysfunction that is all-important, and that says a whole lot on the part of the doctor to recognize that. The treatment for dysutonomia is a trial and error process anyway regardless of the specific type, and in my opinion defining the specific type is not nearly as important as defining the fact that the bottom line is autonomic dysfunction. As for the tilt test, though that has become the standard among doctors who have expertise in treating dysautonomia, I don't think it's a negative for a doctor to say he doesn't think they need to do the tilt test. In many cases dysautonomia can certainly be diagnosed by doing the equivalent of the "poor man's tilt test" in the office. The tilt test gives them more data, but the bottom line determination can very often easily be made without the formal tilt test. I actually respect what the cardiologist said and the fact he recognized it for what it very likely is. I don't disagree with having a tilt test but I also don't think the cardiologist was off base in saying there is no need for one. He actually sees it by just doing the orthostatics, and thus I say he is light years ahead of many! Again, just my two cents, but I would ditch the family doctor. In our very long journey I have learned not to waste time with those who are not informed about dysautonomia and show signs of doubt. It is not worth your time, energy, and money. In some cases, you will find doctors who were not aware of dysautonomia but they are willing to learn. That is an entirely different matter. If they are willing to learn and recognize it and work with you, that's great,and I in fact have the ultimate respect for doctors in that category. However, if there's doubt and/or they are offended by a patient presenting something that they are not aware of, it's not worth the time and effort, let alone the frustration. You are fortunate to have found not even just one but two doctors who are leading you in the right direction. A referral to an autonomic facility is awesome, and it is well worth the drive. My thoughts are with you and your son and your family. It's a tough journey, but you will find lots of support here among those who have also traveled and continue to travel the tricky path of dysautonomia.

There is no doubt in my mind there is a link with autoimmune issues and dysautonomia, although like you say it is difficult to make sense of it and so different patient to patient, etc. I have two teens with dysautonomia. Autoimmue issues are rampant on the maternal side of my family. My Mom has severe Sjogrens and arthritis and she also has fibromyalgia. Her dad and all of her siblings have various autoimmune conditions. She also has had mild orthostatic issues over the years. My sister and I most likely also have the beginnings of Sjogrens based on symptoms. I have had off-and-on signs of autoimmune issues that they have not been able to identify specifically, and two different autoimmune panels have been significantly abnormal. As abnormal as those have been, I am very fortunate that my signs and symptoms have been very transient. A few times over the years I have also had some mild and fortunately also very transient orthostatic issues. It's always interesting to hear about others who have links with autoimmune issues as well. There has to be a link with the dysautomia in these cases.

My daughter has not established disability with the school. When she went in to get info about starting the process it was clear that the lady handling it already didn't believe her and was going to be difficult. With all the fighting we had to do to get daughter through high school with the 504, she got discouraged and didn't pursue it. I told her that at the beginning of next school term she must do that and I will go with her. Meanwhile she has gone in and talked with teachers individually but no she doesn't have formal accommodations. While she does have the focusing issues that certainly interfere, especially with lectures, her biggest problem though is extreme fatiguing with concentration and engaging of mental energy in order to concentrate - and this happens even lying down, and she always studies lying down. She tires to the point of exhaustion within a very short time. I am not sure there is an accommodation that will help with that, unfortunately. The memory problems with my son showed up in kindergarten. In his school they taught reading using phonograms which required memorization and also the process of putting that all together. He struggled to learn to read because of that. When we moved him to a different school in first grade and they taught just by normal phonetics, bingo he got it and moved on. Then trying to learn math facts was the next big struggle which complicated math more and more in general as well. Anything that required memorization was a bear. Third grade he began to complain of stomachaches that he later on told me he realized was actually nausea. Then in fourth grade as homework became more prevalent he would forget assignments, forget to bring stuff home that he needed, etc. etc. That is also when we began to see more visible signs of fatiguing, though in retrosepct he had from a very early age tired easily. It was a progressive struggle in every way. During the fifth grade year the struggles both academically and physically became even more pronounced. I think the most telling thing academically was when we got the results of his standardized testing from fifth grade. They had gone from good strong scores in fourth grade to considerably below average - across the board. It was an astounding contrast when we looked at the two years' results side by side. Now I know exactly what happened - he got so tired trying to read and process the questions that he couldn't do it. It was a few months later that the dysautonomia was finally diagnosed and suddenly everything made sense. You asked about difficulty finding the right word - I really don't see that as an issue - occasionally but not routinely. He did have some testing in sixth grade, in fact just before his diagnosis, that documented problems with working active memory and short- and long-term memory, some attention issues, and dysgraphia. While the focus and memory issues are a problem with both the kids, it is the overwhelming fatigue with concentration and exertion of mental energy that is the most debilitating. I believe that the exertion of that energy triggers the pooling and thus they don't have the blood flow and oxygen that they need for that task. The best I can describe it is it is like a faint without loss of consciousness. It makes education a monumental challenge, to put it very mildly.

This would indeed make a very interesting research project. My son had difficulties in school from the get-go, long before his dysautonomia diagnosis. Though not officially diagnosed as far as testing, etc., his pediatrician at one point said he felt he was classic ADD, and there have clearly been issues with dysgraphia and dyscalculia and big issues with memory. In retrospect, I also realize there were signs of dysautonomia long before he was diagnosed and frankly believe the dysautonomia was likely there from birth. I now firmly believe that the root of the problems is the dysautonomia itself and certainly for my son it is the dysautonomia that is far and away the primary problem. ADD and ADHD are so prevalent among kids now. I often wonder if some of the ADD cases are not actually a mild form of dysautonomia and that dysautonomia is actually the primary issue for them as well. My daughter also has dysautonomia and while she has had significant improvement relative to my son she still has very significant issues with fatiguing with exertion of mental energy and she also complains of difficulty focusing. She is struggling to take a few college courses now and finding it a huge challenge, to put it very mildly. Like my son, the biggest issue with schooling for her is the very quick onset of fatiguing with exertion of mental energy. However, she also has difficulty focusing at times and interestingly I had some Adderall left from our large array of medications that we have tried in the dysautonomia maze. Previously it had not been of benefit, but she currently finds that it is a little bit of help with helping her focus when she is having a lot of trouble with that specific issue. There is no doubt in my mind that there is a link with these kinds of issues - the question is which comes first. I personally believe these issues are part of the dysautonomia. You have a great idea to make this a project. Keep us posted, and I would be happy to contribute info from our experiences if so needed.

mkoven, What you have experienced is maddening beyond words and is unfortunately the norm rather than the exception with POTS, CFS, etc. I would not waste another bit of time, energy, or money on this doctor! Experience has taught me that you simply move on, even when the prospects of finding another physician who will understand are also slim. Regardless of other options or lack thereof, it is accomplishing nothing to stay with a doctor who clearly does not understand, believe, or have expertise that will benefit you. For those who haven't watched the recent video by Dr. Montoya at Stanford which can be found on You Tube, I recommend watching it, at least the first part where he talks in general about CFS, etc. He has such obvious compassion for those suffering from such conditions and the frustration of finding cause and cure. One of the things he says is that he hopes that one day when the mysteries are unlocked that there will be a formal apology from the medical community to all the patients who have suffered over the years and have not been recognized as having a real physiological condition. It's worth watching the first part of the video to see and feel his compassion. Though very few and far between, there are a few health professionals out there who do believe and are trying very hard to find the answers and help patients. Too bad we can't clone them and spread them around!

We are also looking at possibly using this for our son. When seeing a physician out of state at two different visits he was given IV saline in the office. It was amazing to see how it helped him - it was like watching a flower bloom in front of my eyes. For a short time he had significantly more energy and interestingly also immediately wanted to eat - which is something he rarely wants to do early in the day. The downside was that the benefit lasted at most two to three hours. This is something I've been exploring for a while so have done some reading regarding other's experiences, etc. As with everything, it doesn't work for all that have tried it, but for those it helps it often seems that doing the infusions more often seems to help more, e.g. two to three times per week. That of course can become a problem with the veins over time, and many who find it beneficial go the extra step and get a port or picc line for ongoing infusions. That then comes with risk of infection. The first step, though, is obviously to find out if it works for you in the first place. If you have great insurance, that is a big key!!! I have been doing a lot of research lately as to cost, and it does not come cheap. The estimates I have been given for infusions of two liters over two to three hours is in the $400 to $500 range. Since we have an extremely high deductible, that cost is essentially out of pocket for us. This is at infusion centers. I am currently looking for a doctor's office where they do infusions as I think it would be more affordable in that kind of setting, but I have yet to find one in our area. If anyone has any thoughts on where to search for finding such, please do share.

Bren, With your own POTS diagnosis and now your daughter having these symptoms after a series of viral type illnesses, I would say that POTS/dysautonomia is a very strong possibility. I think pursuit of a dysautonomia workup (by someone with some expertise in dysautonomia as it will be a waste of time and money otherwise). The cardiologist you mentioned clearly does not have a clear knowledge of POTS. I have two teens with POTS - my daughter's was sudden onset at age 12 after back to back viral illnesses and my son a much more gradual onset over a number of years. The scenario that you have described is a very typical onset. Also, there are various forms of dysautonomia, but true POTS does not typically involve fainting or fainting often. My kids have been lightheaded often but have never passed out except that my son passed out on the tilt. Something that could help more definitively meanwhile is to do the poor man's tilt. I cannot momentarily locate the description of this online but basically it is to have your daughter lie down for a few minutes, use a BP monitor to take her BP and pulse, then have her stand quietly upright for two minutes and repeat at two-minute intervals for 10 minutes or so. I will try to find the complete description of this and forward the link to you. We found this test to be extremely helpful when we first began to suspect that dysautonomia was the root of my son's increasing difficulties. My daughter had been diagnosed a year earlier but her onset was quite different than his and it took us a while to recognize that the many increasing difficulties he was having were related to the same thing. When our suspicions became very strong and did the poor man's tilt, it was highly enlightening and we immediately contacted our daughter's doctor. His formal tilt soon thereafter was very strongly positive. You will likely find the poor man's tilt very helpful as well. Above all - don't give up in search for a diagnosis, regardless of whether it is a form of dysautonomia or something else. As a parent, you know your kid better than anyone else and you have to trust your gut and be persistent.

Several thoughts to share... A 10-minute tilt is by no means long enough! With dysautonomia it is the prolonged standing that causes problems, and the longer one stands the worse the symptoms get. The tilts my kids have had were planned to be 45 minutes to an hour - neither made it that far but they were past 10 minutes. I also agree with what others have said here that specific numbers do not always correlate with the symptoms. I have seen times with my kids where the numbers definitely reflect other symptoms and times when they absolutely do not. At least one here mentioned the pooling issue even when the numbers were not all that bad. That, too, shows that the numbers in and of themselves do not tell the whole story. Visible pooling, however, is certainly very telling of what is going on. We see the same with my son. He has pooling in his hands and feet very quickly when upright. The BP and heart rate, which we rarely take anymore, do not always reflect what I can visibly see both pooling-wise and fatigue-wise. Back in the days when I did take BP and pulse more frequently, I found that sometimes the numbers correlated and other times not so much. However, it doesn't matter what the numbers are - I see what I see - it's blatantly obvious to anyone observing! I am sorry you had such a trying experience. It is unfortunately one that is repeated countless times among dysautonomia patients.

Interesting to hear so many others express the same thing that I have seen with both of my kids. Both of them sleep propped on pillows and my son has a wedge plus more pillows. Both say that they don't feel good lying flat. One would think that with POTS the flatter the better, but too flat is also uncomfortable!

Hi Debra, What I have found both from my own experience with two kids and from hearing many stories from other parents is that it differs greatly from state to state, school district to school district, and even school to school as to how well the schools cooperate with these types of situations and also how they define and interpret guidelines for 504s and IEPs. I have never ceased to be amazed at how broad this range can be and especially when it comes to determining what qualifies a student for a 504 or IEP. It often depends, too, on the specific person you are dealing with. If you haven't already, I would definitely start the process of applying for a 504, and your daughter should definitely qualify. (An IEP generally comes with greater flexibility but is also harder to get - and will take a lot longer as well). It sounds like you have a doctor who will stand behind you on this and he/she needs to write a letter explaining the condition, the types of symptoms including the fluctuation of severity from day to day and even hour to hour, and should also emphasize the importance of her being able to attend school when she can and therefore needs flexibility regarding class attendance. In order to get these types of accommodations you really need a 504 in place - they don't have to give them to you otherwise, though even with the 504 it's still a matter of working out the details with the school and teachers as to accommodations needed, what they are willing to give, etc. In the process of determining eligibility you will have a meeting with school personnel and in that meeting (and in writing as well) I would also give a clear synopsis of the condition and the symptoms and also how they fluctuate and cite specific recent examples. Good luck. It can sometimes be quite challenging getting through the process but well worth the time and effort if you are successful in getting accommodations that will help your daughter continue her education.

I am no expert on this but my understanding is that with most of the stimulants you will see benefit right away if it is going to help. Between my two kids we have tried several of them with no benefit, with a couple of small exceptions. We have tried Concerta, Adderall (neither of the kids tolerated this), and Provigil. The exceptions are that with Provigil, the first day my son took it, we thought it was a miracle drug. He had an awesome day and said he didn't remember the last time he had felt that good. However, the second day the benefit was reduced by about 50% and after that nothing. The Concerta may have helped a bit at school (this was several years ago) in that teachers felt he was a bit more interactive in class, but even that was not a noticeable effect for him. We also tried tumeric, with no benefit. For some the stimulants seem to help and for others they don't - they have not worked for us. I think you will see benefit right away and if not, probably not going to help. Hopefully some who have been helped by them will give some feedback on that.