Daveb

Dave, my son also has had a very difficult road so far. Last few weeks have been awful, with him missing 5 days of school in a row (and many misses prior). He is on part time. It is so hard to describe this condition because there are so many variances to it. The boy in the article may have an increase in symptoms at any time, or he may not. I do think doing everything possible to keep moving is the number 1 priority we have here. That said the 5 days he just missed he did very, very little moving and sometimes literally could not answer a question because he couldn't cognitively put the words together. For many POTS is very up and down and I believe if my son takes advantage of when he is feeling a little better to be active then the times he is down may not last as long. Sometimes I feel like just saying "I will get back to you all on this in a couple years because I think no one really knows." All I know is that today he went to school and came home happy. Maybe we should all write the author a nice letter and volunteer for a follow-up article that would encompass the many different faces of pots. Oh, and I don't get the high achieving description either.

KCmom, thanks for your reply. I wish you and your son all the best. Mine missed a year of school last year, but is back this year. It's a grind for him, he's been missing more lately. We're looking at moving to more of a part time schedule so he can maintain his exercise program, which he is not able to do after a full day of school.

It’s interesting that many articles (and doctors) link this condition to people who are high achievers. I find this annoying—would they link diabetes or any other physical condition to a personality type?

Also as stated above, this article does not reflect the reality that some people are severely affected and do not respond to treatment. So the comment “the messages of how you feel are not reliable” also irks me. I agree in my case, but too many others are truly too weak to function normally…and I also went through a period where I was too sick to.

But overall I agree it is great to get some more coverage.

Yes, I agree about the overachiever statement. The research does not bear that statement out. My son, while, fortunately for him, very bright, was not an overachiever when he came down with it. Ironically, I think his experience with POTS has changed that, as he now feels that he wasted his talent and wants nothing more than to participate in school and do homework.

For most folks with POTS/NCS, no exercise is NOT dangerous. Dr. Grubb is a strong proponent of swimming as a good way to get started. He also suggested a recumbent bike, which I used for a long time, but recently donated to a friend b/c I can do yoga now. It took me years of work to get myself there.

Nina

My son did Dr. Levine's exercise protocol and it helped him a great deal....so much so that he is back in school after missing his sophomore year. It starts out recumbent (bike), keeps the patient in a target heart range designed for that person, and gradually moves to more intense and upright exercise. Lower extremity and core strength training is sprinkled in there as well. The downside is now that he's back in school, he doesn't have the energy after the day to continue the maintenance program and we're starting to see him backslide.

We've always read how great swimming is, and I thought I'd comment. My son was a varsity swimmer before becoming ill. Flip turns caused him to get migraines and nausea at the outset of POTS. Now when he tries to go back to swim, it is the most difficult exercise for him. His theory is that the use of his arms cause his heart rate to skyrocket. He does ok on the ex. bike and elliptical machine.

Edit to add: If you're Dr. is recommending it, I don't think you have to worry. Ask more questions about target heart rate and buy a quality monitor. Take it slow.

Good luck to you.

It's good to get some publicity out there. I think POTS is slightly increasing in the public's and medical field's awareness. Here's a link to an article in today's Times: http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&ref=science

The article is pretty superficial and gives the idea that POTS is easily managed (the boy's experience in the article has definitely not been that of my son's, who is still fighting hard every day just to get out of bed), but it's still good to get some information out there.

Thanks Naomi. I'll start a new thread when I get time. There's got to be something right? One thing that seems to work a bit is exercise. Seems to get the blood flowing to the brain and he gets a little endorphin kick. Initiating the exercise is the hardest part when he's tired. Good luck and best wishes!!

I don't want to hijack this thread, so if this is an inappropriate response please let me know and I will start a new thread. I logged on today to look for information on memory and cognitive issues with POTS and possible supplements that might be helpful. We've been through the POTS ringer with my son for over a year now. He missed his entire sophomore year in high school last year. However, since April he has had some recovery. Brain fog and headaches lessened and that allowed him to complete Dr. Levine's exercise protocol, which really seems to have helped with tachycardia blood pooling and energy. He has definitely not recovered, but is SO much better than a year ago.

He returned to school on Tuesday (and is unbelievably happy to be back), and we've certainly seen how much it takes out of him, but he is pushing through. We are trying to teach a 16 year old that to push through is great, but you have to know when to back off and rest as well. He said something at dinner yesterday that raised alarm bells for my wife and I. He said "My mind is like a blank slate." He can't recall information from a class, or even necessarily whether he had a given class that day, until he goes back to look at notes or his schedule. This from a former honors student.

His cognition and word finding have improved since April, but I'm afraid that the effort it now takes to go through a day at school, leaves little energy for brain function. He mentioned several times during the day having to return to a classroom to retrieve a book or notebook or other item left behind. Can anyone recommend supplements? He's currently on Topomax (and I know the cog side effects - takes at night to minimize) for headaches, nystatin, florinef, VSL#3 probiotic, d-Ribose, energy revitalization system by Enzymatic Therapies, and 4g salt tabs.

Sorry for the long saga. It seems that any conversation about POTS requires a lengthy dissertation!

Dave

Best of luck. I'm glad to hear it's going well. In everyone's experience, how long did it take to get the exercise protocol once you were accepted into the registry? My son is eagerly awaiting getting started!

Ashleton and ACB, best of luck. My son was just accepted into the registry and we are eagerly awaiting the exact protocol from Dr. Levine's office. They tell us it will be a week or two, as there are a couple of people ahead of him. One question, are you doing this at home? We are hoping to at least start at home. My son went to cardiac rehab a few months ago, but dropped it since it was too hard to get up and out of the house three times a week. Thanks, and again, best of luck.

My son's symptoms were blown off for months by his pediatricians who had treated him since he was 2 (he's 16 now). They treated us like overreacting parents and him as a depressed teenager. I agree about the fact that it wouldn't even be so bad if it weren't for the lack of compassion.

Kay,

My son has had some luck using Nike running pants. We got the idea from watching this webinar: