dakota

I'm sure I don't have anything new that you haven't already heard, but I just can relate to you with my 15 (nearly 16) year old daughter who has POTS. I am just today filling out a massive amount of paperwork to have her evaluated for Ehlers Danlos, which was recommended by the cardiologist who did her tilt table test. I feel that my daughter also developed POTS following surgery. After her first surgery in July 08, she had some symptoms of POTS but was still functioning enough to attend school. Directly following her second surgery in April 09 (which was must less of a major surgery than the first one), she really got hit full force with POTS symptoms and no longer is able to attend school. I know a lot of people with EDS have GI problems and I wondered about that as a possibility for your daughter. As far as treatment goes, I definitely know what you mean. I hope that something new will come along that will help my daughter, only we haven't found out what that might be yet. The last med (norpace) we tried landed her in the ER so I'm not necessarily so eager just to jump right in and try something new! But it sure would be nice to find something. The last time we were at the primary care pediatrician, she said that blue/purple feet were normal for tall people! Thank heavens for my daughter's cardiologists who don't think that is a normal part of life. Best of luck to you, aquadiva, and to you Brenda. It's really not easy to sit back and watch your child go through all this, wishing there was something you could find to help her through it.

I'm sorry your son has been having a rough time. I don't have any ideas about the airplane flight, although Lenna's suggestion is good. I have been wondering the same for my daughter, even though a flight is not in the near future. My daughter (nearly 16) has the same issues with blood pooling and trouble in the shower. She didn't want to use a shower chair until the day she actually fainted, thankfully it was just outside the shower and not in it. Now she uses a shower chair and this has seemed to help a lot. She also leaves the door open when she showers so that it doesn't get so hot in the room. I think the combination of standing and heat can be just too much. I hope it goes well for your son and that you all have a great time in California!!

I would definitely get it checked out by your cardiologist, sooner rather than later. Since this is something new for you and it is your heart, I don't think I'd wait. Particularly with the pains you have been getting. Give them a call and let us know how things go.

<credit to 12 More Pages for finding this>

I thought this was interesting. It talks about using a "Lifeshirt" to monitor the body's reaction to stressors. http://www.youtube.com/watch?v=ckWSNrYTXys

Endure, maybe an extended release tablet would work for you. My daughter is on propranolol 120 ER, taking it once a day. She's also on midodrine. These are the two meds that help her the most.

Years ago, birth control pills caused problems for me. I also had facial flushing and overheating and it caused some problems with my heart beats. I have ectopic beats but am not bothered by it. On the pill, the beats were so irregular and so forceful that I thought my heart was going to beat out of my chest. I stopped the pill and it went away. The doctor had sent me to an endocrinologist first and then a cardiologist. Only the cardiologist agreed that it could have been caused by the pill. I am now nearing menopause, and my heart beats have started to be more irregular again. I believe this is hormonally based. A cardiologist put me on a beta blocker, but he thinks it is all due to stress. Funny thing, though, it doesn't happen to me in times of stress but in times of hormonal fluctuations.

I don't know why he wouldn't just do a poor man's tilt table test, which is just taking your blood pressure and heart rate while you're lying down, then sitting/standing you up and doing it again and see what happens. Depending on how long you can remain standing, they might keep you standing and take your stats every 2 minutes or so and could get a pattern. If you can only stand up briefly, then they would be able to see that, and you could lie/sit back down right away. That certainly would be easier than a full tilt table test, and it is what they do for my daughter when they see her now following an initial TTT. I can't imagine your having to go through that every 3 months.

My daughter takes propranolol 120 extended release. Like you, mirry, when she goes out (well, when she walks around at all, but it happens more when she is out because the temperature is not as controlled as in our home) she begins overheating and shaking, but she tends to vomit more than faint. Propranolol has been the only thing so far that has allowed her to be upright at all. We did have one cardiologist who said he didn't know if she really needed to be on that, but my daughter feels that it helps her, and it certainly did initially, so she is not inclined to come off it any time soon. She also is on midodrine to help constrict the blood vessels. This also raises her blood pressure, as she has intermittent hypotension in addition to the tachycardia. I hope that she will start florinef soon. Julie, I certainly appreciate your saying to start on a very small dose of it. She tried florinef a while back, and they started her on .1 tablets, and it made her very nauseous and bloated. I am hoping that starting at a 1/4 tablet, it will be something that she will tolerate and it will help her. Mirry, I hope that you can find something that helps you.

My daughter did not have POTS prior to her initial surgery in July 08. Following the surgery, she developed what I would now call minor POTS symptoms, although we didn't realize it at the time. After further surgery in April 09, her POTS symptoms came on full force. She is due for more surgery in May of this year, and I can only hope that her symptoms don't get even worse than they currently are.

Kits, Your note really got me worked up. How dare a doctor say that to you and leave you with no hope for the future! I am amazed at the insensitivity of some people and wonder how they got to be doctors. I think this bothers me so much because once when the regular cardiologist was unavailable, my 15 year old daughter had to see a different cardiologist. He told her there was nothing more they could do for her, that she'd get better when she's in her mid 20's and then come down with it again in her mid 40's! He told us to come back in 6 months. I just couldn't believe that he had said that to her. We are now seeing another cardiologist/electrophysiologist who is trying some new things for my daughter and will continue trying to help and not just dismiss her. I'm glad that you have a GP who is helpful and understanding. As far as the research goes, I don't have anything to cite, but I do believe research is still going on. There are doctors out there who care, and I think they learn more even with each additional patient they treat. I'm sure other people can probably point to specific studies currently going on. Hang in there!

DYSarray (very clever name, by the way!), I'm glad you were able to get one custom made for you. That is the way to go if you are going to be needing one a lot, I think. kitshalleen, There is no dismantling at all. In fact, the chair comes in one piece already put together, with the exception of the foot rests. Those are the only things that come off at all. I have a Subaru wagon and I just pop the wheelchair in the back and pull it out again very easily. While it is not extremely lightweight, it is certainly easy enough for me to lift in and out of my car without much trouble.

We are so happy with my daughter's wheelchair, that I went to my emails and looked this up to show you what we got from Amazon. "Invacare Tracer EX2 Wheelchair with Removable Arms" Health and Beauty; $144.98 Sold by: Wheelchairs Plus Mobility Solutions, Inc. We didn't go and try any out. Her main criteria was that she wanted one she could push herself, so we needed one with the larger wheels rather than the ultra light ones with the tiny wheels all the way around (those require someone else to push them, as far as I can tell). Not that $144.98 is cheap, but I thought I'd have to pay more than that for a decent wheelchair. That even included the shipping. We are both very pleased with it. Good luck with your search!

Becky, When my daughter was fitted for her stockings, the woman at the medical supply store said that Sigvaris is a brand that they carry that comes in long. My daughter is 5'11', thin with very long legs. She wears a size S2 in the Sigvaris brand. Like Jana's brand, these are for thigh length of over 28". You might want to give this brand a try. ~ dakota

My hat goes off to you, Elfie, for your perseverance these past few years in school. My 15 year old does not attend high school any more, because she was unable to tolerate the same things that you are putting up with on a daily basis. Hang in there, you only have one year left! Thank you, Julie, for your great advice. I have just ordered a copy of the booklet that you mentioned. I do think it helps sometimes to have someone else stand up for you in cases like this, someone who is perceived as having inside knowledge of the system. Sometimes they can get things done when an individual cannot. Best of luck to you, Elfie, and Julie, to you and your son.

I know when my daughter first started on midodrine, her heart rate dropped steadily for a week starting at around 80 and declining throughout the week until it was about 45. After that, it went back up to normal. I just can't quite recall what her blood pressure did. although I believe it did initially drop a bit, just not quite as much as her heart rate. It's my recollection that her blood pressure was on the rise after a couple of days.

I got my daughter a Timex that doesn't have the chest strap. It actually does not work well on either of us. I think the problem for us is that our wrists are rather tiny and the main watch part is so large, that it didn't seem to fit well on our wrists. I think it if fit better, there might have been a better connection. If you stopped and wet it underneath, it made a better connection and then worked maybe 30% of the time. But it was not one I would recommend. I think the ones with the chest strap may be more reliable.

On Self.com, you have access to: "Your own Self.com profile page, where you can upload photos, write a personal blog and keep a list of friends and favorite pages. Join or create a private or public group, where you and your friends can stay in touch, share photos, keep a calendar of events and more! Calculators, fitness and food logs that will help you stay on track and in shape. " I believe this is where I used to keep track online and I thought it was pretty handy. You can see your friends' progress as well. https://secure.self.com/user/login

I suppose the mom in me feels the need to comment here. I appreciate your desire to want to get out of the house, not to become too comfortable just staying home all the time. But I'm thinking that driving for an hour while you might be dizzy is just not a good idea. Maybe you could do something special for your fiance at your place. Make a special dinner, maybe. You could get out by going to a store and buying food, maybe a specialty food store that you don't normally go to, just to be getting out of the house and going somewhere different. I'm also thinking that you could be worn out by the long drive. I think possibly shorter trips might be a better way to get out of the house more. My daughter is very interested in photography, so she gets out just to take pictures. Maybe something like that would interest you. You may have already headed off, and if so, let us know how it went!

My daughter's EP prescribed close to 4g per day. My daughter started out with just 1g per day (in addition to regularly salting foods plus gatorade) but it really made her feel worse. She said her overheating increased and her stomach was getting bloated. The bloating happened also when she tried florinef and it made her so sick she was unable to eat. Does high salt make other people sick, too? I see Kari that you said they made you sick. I don't know if I should be pushing something that makes her feel bad in the short term hoping for long term progress.

My daughter just went and picked up her first pair yesterday. She put them on and I talked to the person from the store for a minute. I looked over at my daughter and she was about ready to pass out while sitting in the chair. I don't know if it had anything to do with the compression stockings or if it was just the heat in the room -- it was a bit warm. But the store clerk who happened to be a nurse said to take them off right away and brought her some water. She said we should contact her doctor, as that's not what normally happens when you put them on. They were 20-30. I'm going to have her try again at home where it's cooler (we keep it like an ice box in here for her!). But if it doesn't work at home, I'd say it's a no-go for my daughter.

My daughter had a cardiologist who is nice, but rather unfamiliar with POTS, although he has prescribed the normal initial meds. (He said my daughter was probably the first true case of POTS he'd ever seen.) She then got an EP who doesn't seem to think the propranolol is such a good idea, but it was the only thing that kept my daughter from vomiting when her POTS first hit, so we are not really inclined to eliminate that med. Now I don't really know who she should be seeing.

My daughter usually gets up around 1-2. She's been trying to set an alarm for 10 a.m. and we're going to see how that works. It takes her about an hour to eat breakfast and get going. She can be up for a couple of hours and then is tired again from about 4-8 p.m. and is mostly sitting down. Her teacher comes from 3-4:30 twice a week, but she's often tired by the time she's here. She is more awake mentally after 8 p.m., but is still sitting down for most of the evening. She will usually go to bed either around 9:30 or around midnight, depending on whether her sleep medicine is working. But most of the evening is spent sitting.

I wondered if the pupil dilation might have to do with meds. Wikipedia says "Drugs that increase overall serotonin levels in general are capable of causing mydriasis" so I was kind of thinking that my daughter's dilation might be related to the Trazadone she takes for sleep.

My daughter was put on florinef a while back, but was extremely nauseous from it, so we stopped it. She was started on .1 once a day. Now, from reading this, I'm wondering if we had started off at a lower dose it if would have worked for her.