postural orthostatic tachycardia syndrome

    • Anonymous
      July 13, 2007 at 5:42 pm

      I just met someone whose teenager was dx with postural orthostatic tachycardia syndrome, following mono. It took them a long time (over a year) to get a dx. People kept telling them nothing was wrong, it was stress, etc. I was reading about it and discovered it can also develop in people with GBS. Basically is affects the circulation system–part of the automonic nervous system. When you stand up, your blood pressure is supposed to normalize/adjust on its own. With this condition, your body doesn’t correct the BP properly, and the heart tries to correct. (for some, BP is normal but the heart still overreacts)

      For some POTS results in fainting. But for many, there is no fainting, just severe fatigue, sometimes headaches, fuzzy thinking, etc. And the fatigue is especially bad when exercising and especially when in a standing position.

      I wonder if my daughter might have this. She is getting better in many ways but can’t stand to be upright very long–she just wilts/collapses. The test to dx is fairly simple, a tilt-table test where they monitor pulse rate and blood pressure while tilting the table to a vertical position. Now, this may have nothing to do with my daughter’s difficulties in recovery, but I am going to ask the rehab doc what he thinks next week. Meanwhile I just wanted to know if anyone here knows about this at all–I wonder if it could contribute to slow recovery for some?

      The teenager I mentioned w/ POTS has been recovering for about 2.5 years now and is still severely impaired by fatigue and general weakness, despite resting, walking, and doing everything the docs say. Is improving, but slow. Apparently POTS is similar to GBS in that it takes TIME to get better.

      (There’s a web site that has info on various related conditions.)

    • Anonymous
      July 13, 2007 at 8:17 pm

      Very interesting, thank you so much for posting the information. I dont know anything about POTS, and have never heard of it.

    • Anonymous
      July 14, 2007 at 8:17 pm

      Perscribed stockings help alot with POTS and neurocardiogenic syncope(very similar). Doing the tilt table test is not the great of an idea with gbs people, they inject you with stuff to make your heart rate drop or increase-not a good feeling even when normal. I would check with your daughters neuro before having the test done. It isn’t a necessary test, it won’t change any treatment that your child might need to correct the circulation problem. Fainting can come on quite rapidly, you can tell before you faint that you are having problems, sitting down right away is best to prevent fainting. The hose/stockings worked well for me, i had the thigh high ones, went from the toes up to the top of the thigh-snuggly, they were prescription and i was measured professionally for them. You can get some off the shelf, if the legs are normal length and build. The hose help keep the blood from pooling in the feet/lower legs, which in turn helps keep it circulating and helps keep the bp/heart rate under more control. Increasing the volume of the blood also helps relieve the symptoms-increase salt intake and fluids will increase blood volume. Check with your daughters dr if there is anything that would be good for her. Take care.

    • Anonymous
      July 15, 2007 at 12:34 pm

      My daughter doesn’t faint (maybe she would, if standing longer? But can’t stand…) She does often get light-headed/dizzy upon walking up and sitting up in morning. Main issue is upright exercise seems very difficult. And standing still (with walker/and or support from a person) is extremely hard. After a minute or two, she just wilts. I ask if she feels like she is fainting (ie things going dark, getting dizzy) but it isn’t that. Her legs just feel like they will buckle. And actually DO buckle, if we don’t either start moving or let her sit down. Walking (again, with support–can’t walk by herself) is much easier to tolerate than standing.Though more than 5-10 minutes, she’ll start to fold up when walking too.

      I certainly am not excited by the idea of more tests, though. However, if she does have some kind of issue w/ BP or such, it would be good to know. It would shed light on why she can swim pretty well but standing is still so hard.

      But, I didn’t realize that drugs were involved with the tilt table test. I thought it was more straight monitoring and not invasive. Will ask rehab doc what he thinks. I trust his advice a lot more than the neuro’s (need a new neuro, probably, but that is another story).

      Thanks for your input, very helpful.

    • Anonymous
      July 15, 2007 at 7:47 pm

      My cousin’s granddaughter, who he has raised all of her life, is 16 years old now & has had a very severe case of POTS for over two years now. She is basically homebound & cannot even attend school. I live in MN & they live in the state of Virginia, so I have never met her. But if you would like to talk to someone who knows a lot about this illness, I know he would talk to you. Just shoot me an email & I could give you is name & phone number…