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PotsMom

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  1. 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.
  2. 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 no
  3. 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 signi
  4. 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.
  5. 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
  6. 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 compone
  7. 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.
  8. 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 discu
  9. 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
  10. 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 nurs
  11. 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
  12. 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.
  13. 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
  14. 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 p
  15. 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 au
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