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Everything posted by PotsMom

  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
  16. 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 au
  17. 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
  18. 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 itsel
  19. 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
  20. 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 w
  21. 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
  22. 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 iss
  23. 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!
  24. 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
  25. 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. Th
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