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.